# Fertility & Gynaecology Acadamy (Amin Gorgy) : Part 9



## Skybreeze

*New Home Ladies
    *​


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## Chicky Licky

Thanks Ells! xx


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## berry55

agate- thats great news!!!!! xxxx


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## MissyMinx

Great news Agate - absolutely fantastic.  Hopefully you'll be able to relax a little bit now, you must've been on tenterhooks all day.  I always dreamed that the stress of IF would end once I saw that line on the pee stick that meant I'd been lucky enough to get my BFP, but really it just swaps for a whole new set of worries.  Can't wait to hear of your 20 week scan.  to you and your bump.

Cozy, I've got to have the full set of immune tx, LIT, Humira, IVIG, Intralipids, Prednisolone, Clexane, Gestone, antibiotics.  I've also got to start taking Thyroxin and up my dose of Metformin.  Yikes    I don't think I've ever actually written down what I'll be having before - it seems an awful lot   Ah well, if it gives us a BFP I'll take as many pills/jabs as anyone can shake a stick at.  I hope you're well and blooming. xx

Niccad, still got everything crossed for you.    

Zeka - love the sound of the spending spree.  Hope you got lots of goodies!!!

Lou, going to Athens and back in the day must be exhausting.  I'm travelling from Manchester and have decided to go out a couple of days before and fly back the day after.  My mum wants to come with me, bless her.  I'm not that great on planes, I get dreadfully and pathetically het up which is ridiculous, so part of me would rather get it all over and done with in the day.  I know it's probably a really good thing that you felt poorly after taking the Humira because it means that it's working, but I can completely understand why you're not looking forward to the next one.  Sending you   and hoping that the next one doesn't knock you so much. xx

Best of luck for tomorrow Shellie. Will be watching for your news.  xx

Hi to Berry, hope you're ok.

Ells, I'm still about 7 weeks away from starting our immune tx.  I've got my first LIT on the 23rd March, then I start Humira the following week.  I'm having immune tx with Dr G alongside my last NHS tx, but I haven't been able to tell my cons anything about it as he's really anti immune issues, which I find a bit odd, but it's just easier not to say anything than try to convince him.  I do hope that this tx brings you your BFP.  Looking at your signature, you seem a bit like me with your response, I only got 3 eggs and 1 embie from my last tx , so I'm hoping that with the immune tx I might get a few more eggs.  Hoping and   that this is the one for you. xx

Hello and   to all.

Em.x


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## berry55

shellie- i hope everything goes well 2morrow. will b thinking of you xxxxx


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## Newday

my CD19+CD5 was 7.6 so does this mean I don't need gestone
Dawn


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## -Starflower-

Louiseb26, thank you for your help.  You were right, that is the scan I'm to have and the local consultant agreed to let me have it.

I'm new to this so a bit baffled by what's in the messages here but I know my next step will be the LIT.

Can someone tell me how to go about going to Athens for it?  How do I make an appointment? Do I need to contact Mr Gorgy again to ask for a referral?  Can you recommend anywhere to stay?

Many thanks.


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## -Starflower-

Oh, and how much does it cost?  (LIT in Athens)


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## Saffa77

bookmarking


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## Peanuts

Hi girls

FJ - I just got my prescriptions from DrG, he has given me Clexane at 20mg for 7 days and then 2 weeks at 40mg for 2ww, 4 weeks of prednisalone and 2 weeks of Gestone.  Hope that saves you a £90 consultation fee!  He suggested IVIG & Intralipids for me, but as I don't fancy the IVIG, he said to have Intralipds a week after 2nd LIT and then retest, then can have 1 or 2 infusions during stimms.  Good luck with everything  

Ells - not sure if you've decided what to do about your flu jab, but might be worth asking Maz on the Pharmacy thread, she's lovely (and from Edinburgh like me!)

Lou - DrG told me yesterday to retest 3 weeks after 2nd LIT, but don't know if its different if you're taking Humira?  Best to give him a call to check how long to wait and what day is best.  

Zeka - well done you on your shopping trip - you deserve to treat yourself!   How you been doing hun? 

Shellie - Good luck for your big day with DrG tomorrow, hoping that polyp has done a vanishing act! 

Agate - brilliant news about your test results (or lack of them!)  Hoping you can now start to enjoy your prg    Agree with the girls about your honorary FF medical certificate!  You've been such a font of knowledge and have really helped me get to grips with all this immune stuff 

Sflower - I'm still quite new to all this immune stuff too, but the girls here have been fab.  You'll need 2 trips to Athens 4 weeks apart, at 500Euros each.  Hopefully one of the girls will be able to book you in, I'm out of the 23rd Feb, but I'm sure there are others going out before that if depending when you want to go.  DrT has clinics every 2 weeks, so the next is the 9th Feb, 23rd Feb and so on.  Most of the girls tend to go out and back in one day, but haven't been yet, so not sure whats best!  I'm sure there'll be someone else along soon that'll be able to give you more info. 

Missy - I'm doing my cycle at an NHS hospital too, and haven't told them about immunes either - consultant is dead against them.  Feeling ok about it, just worried that I'll still have LIT marks on my arms when I go for EC - anyone know how long these last?

Nic - wishing you all the luck in the world for OTD tomorrow  

Berry - hope you're feeling better soon, and ok for next shot of Humira on Monday - CU soon!

As for me - I had a good appt with DrG yesterday, although I felt like I was telling him what my protocol was going to be!   No Humira for me, as my TB tests have come back Indeterminant twice, so has recomended IVIG & Intralips instead.  Not sure about the IVIG, as I react better to Intrallipds, so will go with that first and see how I get on.  SO have dates now for LIT and for Intrallipds, and all the other drugs - Clexane, prednisalone, & Gestone.  Feeling a bit better that I have a plan of action, just need to get on with it now!! 
Take care
Dxx


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## ells

oOOOOH I just lost a long post umph   .

Niccard good luck for tomorrow hun, will be thinking of you   .

Em, our clinic is not anti immune tx but they will only do pred, clexane and aspirin, but if you dont ask you dont get!!  Your not too far away froms starting hun.

Sflower, dont worry about getting your head around the immune stuff, you'll soon get your head around it.  

Agate are you have a little party this evening   .

Peanuts, I still havent decided about the flu jab, my GP is supposed to be ringing me tomorrow to talk about it.  I posted a question about it on the pharmacy thread but havent had a reply yet.

Hope everyone else is okay   .

Right better get to bed early start tomorrow.  Night night ladies. 

Ells


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## berry55

Is it safe for me to be taking omega 3 fish oils and tumeric while on humira tx?? 

Peanuts- ohh i'm defo gonna book a consultaion with Dr G when i go down to london on the 15th. Looking forward to meeting up with u on tuesday! xxx


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## agate

Sflower said:


> Louiseb26, thank you for your help. You were right, that is the scan I'm to have and the local consultant agreed to let me have it.
> 
> I'm new to this so a bit baffled by what's in the messages here but I know my next step will be the LIT.
> 
> Can someone tell me how to go about going to Athens for it? How do I make an appointment? Do I need to contact Mr Gorgy again to ask for a referral? Can you recommend anywhere to stay?
> 
> Many thanks.


There is a whole thread about LIT and people's questions and experiences of it in the investigations and immunology section of the board.

Basically, you need to decide whether you want paternal or donor LIT - that's a whole topic in itself - but your choice depends on 
1) availability of donors in Dr T's clinic on the day you want to go
2) how comfortable you are wth having blood from someone you don't know
3) whether you have a DQa match with your DH and whether you are advised that donor might be more likely to work for you because of it
4) whether you believe that donor is more likely to work for you than paternal - its really a bit of trial and error thing but some ladies seem convinced that donor works better - others would really rather stick with paternal unless they really have to move on to donor if the paternal doesn't work.
5) whether it works out a lot cheaper for you to do donor than paternal because your DH doesn't need to fly out too

You need to get a copy of your LAD and DQa results to Dr T (either by email or ask one of the girls who is going out next time to take them to him and book you in for your first LIT - sometimes Dr T takes a long time to respond and in the meantime you don't know what's happening and its stressful whereas its easier for someone to arrange it for you face to face then you know its done). Its pretty easy to arrange your flights (and hotels if you are staying overnight) on expedia or BA.com (or easyjet.com if you are going from gatwick). If you choose paternal LIT then it costs Eu 500 and your DH will need to get some screening tests done before you go. If you choose donor it costs 600 Eu but your DH doesn't need to go with you and you don't need any blood tests done. Your 2nd LIT will be 4 weeks after the first (barring Dr T's and greek national holidays). Whether you can cope with going there and back in a day depends how easy it is for you to get to gatwick or heathrow but it is possible to do it in a day if you get the BA flight that gets in at something past 1pm and fly back on the 19:05 - but it is a bit of a rush and on any given day, you don't know how busy the clinic is going to be - I couldn't do all of it in a day but lots of ladies have. Travel in athens to the clinic is easy on the metro (or you can get a taxi). There are lots of hotels in central athens on expedia or BA.com - anywhere in kolonaki, plaka or akropolis is pretty close to the clinic. The hilton in kolonaki is the nearest to the clinic but its a bit expensive. Athens gate hotel seems to be pretty universally liked, but there are cheaper places.



berry55 said:


> Is it safe for me to be taking omega 3 fish oils and tumeric while on humira tx??


I don't think there would be any problem with that. don't take fish oil on an empty stomach or if you are feeling nauseous because it is absolutely revolting if you throw it back up again! If they repeat on you badly - its worth trying another brand because some are more fishy tasting than others and having fish burps all day is horrible. Some of the lemony ones like eskimo brand are very gentle on your stomach. I couldn't stand the tesco ones.

Theoretically, if you were taking fish oils with high dose clexane there could be an issue because fish oils also have an anticlotting effect so it would be possible to overdo the anticlotting if you were taking large quantities of fish oil as well as a high dose of clexane - but you aren't doing that. If you do end up on high dose clexane, you should stick to moderate doses of fish oil, and you would be on the lookout for any signs of clotting issues, e.g.,, bruising, nosebleeds etc and would be speaking to Dr G about it anyway if you had any concerns so that he could get your clotting checked.

Yes, Ells we were planning a little celebration supper - but I've been feeling really rough from the prednisolone withdrawal - so we've postponed and DH made beans on toast instead.

ShellieG : good luck tomorrow



Peanuts said:


> Feeling ok about it, just worried that I'll still have LIT marks on my arms when I go for EC - anyone know how long these last?


I think it varies from person to person - mine were still just visible after 2 weeks but you could easily mistake them for something else like a little allergy rash to perfume or something. They fit into quite a small area (at least after a week when the redness has gone down) so if there was a real problem, you could put a big plaster over them. It was different when I had it done with Dr A - then most of the inside of my forearm was black with bruises for several weeks - but that looked more like something from an impact than a needle - it was very different to the LIT with Dr T.


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## Zeka

Blimey you lot can chat!!


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## bluprimrose

bookmarking - & wanted to say hello to my lovely fga friends.  have been a bit absent recently but pop in to see how you are every now & again & am thinking of you.

sending hugs

bpxx


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## DippyGirl

Hi

Hope you don't mind me barging in here, I recently got my immune results frm Dr G and I'm completely miffed  I've put off having these tests for years and it seems that now I've actually done them and that got the results here I am really anxious to know what they mean. I have no idea how to interpret them and with my history I was kind of expecting the worst... I wondered if you wouldn't mind helping me to understand what I might be facing (I have the Dr Beer book, just can't seem to interpret my results with them). Someone has worked through the results and highlighted a few numbers or drawn arrows from one figure to another.

DQ Alpha - don't look alike but are highlighted (I've colouring in purple)

DH 0201, 0501 ( 2.1, 4.1)
me 0102, 0103 (1.2, 1.3)

NK Assay (% killed) panel
50:1 29.1 10-40
25:1 24.0 5-30
12.5:1 15.3 3-20

IgG conc 12.5 50:1 ** 22.7 
IgG conc 12.5 25:1 ** 18.0 
IgG conc 6.25 50:1 ** 19.9 
IgG conc 6.25 25:1 ** 13.8

% CD3 62.9 60 - 85
% CD19 5.2 2 - 12
% CD56 * 27.4 2 - 12
% of CD19+ cells, CD5+ 7.7 5 - 10

Leukocyte Antibody Detection

Flowcytometry negative
(T-cells) IgM+ 26.2 %
(T-cells) IgG+ 1.5 %

(B-cells) IgM+ 17.5 %
(B-cells) IgG+ 16.0 %

TH1:TH2 Intracellular cytokine ratios
TNF-a-IL-10 (CD3+CD4+) 23.2 ratio 13.2 - 30.6
IFN-g-IL-10 (CD3+CD4+)	*	5.3 ratio 5.8 - 20.5

NK Assay w/intralipid

50 :1 w/intralipid 1.5 mg/ml 14.1 %
25 :1 w/intralipid 1.5 mg/ml 7.8 %

MTHFR negative
Factor V Leiden negative
Factor II Mutation negative

Any feedback would be really, really appreciated. Thanks
Dippy x


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## niccad

Agate - great news about the no phone call xx

Bad news for me this morning. I'm absolutely gutted and can't stop sobbing... I kept it quiet, but I really thought it had worked this time. I've now killed 6 beautiful embies and I just don't know where to go from here. Not sure what other tests I can do or what's wrong with me..... and I feel I'm running out of time...       
On the last fail DrG retested my NK's whilst I was still on everything & they came back good except for cd56. Do you think I should test again & get my LAD retested? I so desperately need to know why top quality embies aren't implanting....  x


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## MissyMinx

Oh Niccad        this is so unfair.       I'm so sorry to hear your news.  I'm afraid I can't offer you any practical advice, but I wanted to send you   and tell you that I understand how it feels to wonder 'why'

I'm sure someone will be along who can advise you as to the best course of action, but you are in my thoughts.

Sending you  

Em.x


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## agate

Niccad

I'm so sorry. I don't know what to say.  I really thought this one would be it for you because I thought that maybe your eggs would be even more fabulous this time because of getting your TNFa down before the cycle.  Although, Dr B did keep saying that it would take 6 months after the TNFa came down before the eggs got better - which meant that a lot of his ladies got pg 6 months after they started their immune txs - I don't know where you are on that timeline.

I know my LIT with Dr A didn't do anything at all, so maybe LIT with Dr T would be worth it, but then again, your IgG+ B LAD wasn't that bad in the first place - it was already over 30 - but it is supposed to be better if you can get it to be over 50, so maybe think about LIT with Dr T - honestly, its a nicer experience and quite different to having it with Dr A - and I've survive it twice and am still thinking about a third time - and that's with me being a nervous nellie.

I know you said your TNFa came down ok without humira, but I guess you could think about humira again and talk it through with Dr G?

At the end of the day, it could just be bad luck so far.  Statistically, it takes 3 fresh (and any frozen) cycles just to get you past the 50% probability of success point i.e., to get you to the point where you can expect that its more likely than not that one of your cycles would work, you have to plan on having 3 full cycles.  

Even when you get the immune conditions right, you still have to play roulette with the embryos because unless you PGD them, you don't know that the embryos going back are genetically good ones, and at our age, at least 25% of them are genetically hopeless, so each time you have 2 put back, there is, unfortunately, still a big chance that the two that get put back are duff ones and you have to keep trying to find 2 that do have the capacity to implant.  Even beautiful looking day 3 embryos might not have the capacity to get that far, taking them to blast gives the embryologist more clues, but even then, not all blasts are genetically normal if you PGD them.  

You could ask about assisted hatching?  I can think of 3 ladies who tried that in the end and got pg after previous failures - sometimes I think its hard to tell under the microscope how tough the shells are and whether AH would be beneficial. 

Have you and DH had karyotyping done?  

I guess you could think about DNA fragmentation, but its probably not worth doing if your DH has a normalish count? 

Other than that, I guess you could investigate PGD/array CGH - its the only way to tell for sure whether the embryos that are going back really do have the capacity to implant (so its the only way you would know if its an 'embryo thing' vs an 'immune implantation thing'.)  Diane72 has looked into this, so maybe you could speak to her?

I'm so sorry niccad.  I hope you find the answer.


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## agate

DippyGirl: Your DQas show no match with your DH - so no problem there. 
Your NK assay shows elevated NK activity because its more than 15 which would be more ideal for fertility.  Dr G is likely to prescribe prednisolone and IVIG/intralipids
Your NKs are suppressed by IVIG but seem to be more suppressed by intralipids. Dr G is likely to prescribe intralipids (but maybe IVIG)
Your CD56 NK cells are elevated in number (not just activity) - so same again - prednisolone and intralipid (maybe IVIG)

Your LAD is not terrible but is not great either - you want your IgG B cells to be at least 30 and preferably 50 (but whether the LAD test is meaningful at all if you haven't been pregnant before is unknown). You'd probably want to consider LIT, probably parental because you have no match with your DH - but it will be up to you whether you decide to have LIT and whether you go for donor or parental.  There is a lot of info on the LIT thread (in investigations and immunology).

Your cytokines/TNFa ratios look fine - so no humira.

You don't have inherited thromobophilia, so if your level 1 clotting test are ok as well, you probably wouldn't benefit from having clexane/baby aspirin but see what Dr G says. 

good luck


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## ells

Niccard, I am sooooo sorry to read your news huni, lifer can be soooo unfair.  Agate has given you some really good advice hun.  Look after yourself and DH, take some time to heal sending you both lots of big        .  Thinking of you hun.

Ells


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## berry55

Niccard-     I am so so so sorry! I'm thinking of you and ur DH xxxxxxx


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## Newday

Niccad I am so so sorry words fail me.

Can anyone tell me when they started their steroids and clexane? Also best days for intrlipids I have managed to get Con to do prescription for [email protected]

Thanks
Dawn


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## Ourturn

Niccad - I am so very sorry hun    

Agate - that's another hurdle over  

Hi everyone
Sorry for lack of personals. E-mailed Dr G asking him to fax a script for IVIG & Intralipids to H & H and to tell me what day to have the drips.. no answer yet. I start stimming on Tuesday and usually stimm for 14 days. Any ideas?

Anna x


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## agate

sobroody1 said:


> E-mailed Dr G asking him to fax a script for IVIG & Intralipids to H & H and to tell me what day to have the drips.. no answer yet. I start stimming on Tuesday and usually stimm for 14 days. Any ideas?


I had them on day 5 and 12 of stims - so they were roughly 14 and 7 days before ET (which is what you are trying to aim for, I think)


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## Ourturn

Thanks Agate. Any idea if [email protected] would do the drip on a weekend or will I need to choose the closest day?


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## agate

they will do drips on the weekend, but they charge extra (not sure how much)- am sure the nearest day would be fine!


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## Ourturn

Thanks


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## Newday

when do you think I should start predisolone for FET?
dawn


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## agate

I don't know Dawn, but on a fresh cycle Dr G starts on day 5,6 or 7 so I guess the aim is to be roughly 7-10 ish before ET to give enough time to calm your NKs down before transfer.


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## Louiseb26

Hi Ladies

Niccad - Big    for you lovely.This is such a hard road and so cruel sometimes.I'm so sorry Hun.xxx

Shellie - How did you get on lovely? I'm not looking forward to going either...i will take our minds off it all with my funny story's  

Anna - Your better off phoning Dr G.He has only just emailed me back after waiting a week.

Hi lovely Ells,Em,Agate,Peanuts,Zeka,Cozy,Mag   Sorry if i have missed anyone.

Lou xx


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## Zeka

Niccad, so so sorry honey. It just gets harder doesn't it. Sending you a big virtual hug x


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## thumbelina

Hello ladies  

I was wondering whether I can join you.

I recognise a few of you from my past cycles.

Niccad - Im so sorry hun    

I just received my results from Dr Gorgy and was wondering whether you could help me to understand them  before my next consultation.

DH      0102, 0103      ( 1.2, 1.3)
me      0103,0201      (1.3, 2.1)

NK Assay (% killed) panel
50:1                                        22.2        10-40
25:1                                        12.2        5-30
12.5:1                                      9.8          3-20

IgG conc 12.5 50:1 **                  5.6 
IgG conc 12.5 25:1 **                  3.7 
IgG conc 6.25 50:1 **                  8.4
IgG conc 6.25 25:1 **                  4.3

% CD3                                      *  91.2        60 - 85
% CD19                                        4.5        2 - 12
% CD56                                        4.7        2 – 12
% of CD19+ cells, CD5+                  6.7        5 – 10


Leukocyte Antibody Detection

Flowcytometry        negative
(T-cells) IgM+        2.1        %
(T-cells) IgG+        1.4        %

(B-cells) IgM+        77.1        %
(B-cells) IgG+        21.6        %



TH1:TH2 Intracellular cytokine ratios
TNF-a-IL-10 (CD3+CD4+)      21.5      ratio      13.2 – 30.6
IFN-g-IL-10 (CD3+CD4+)  *  3.7      ratio      5.8 – 20.5

NK Assay w/intralipid

50 :1 w/intralipid 1.5 mg/ml      3.4    %
25 :1 w/intralipid 1.5 mg/ml      1.0      %

MTHFR                                          negative
Factor V Leiden                              negative
Factor II Mutation                            negative

Thank you very much.

   and     to you all.

Love Thumbelina xxx


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## agate

Thumbelina

You have a partial DQa match with your DH and your LAD is not brilliant, so you might want to consider LIT and talk to Dr G about it - whether the LAD test is meaningful if you have not been pg before is unknown - but a lot of us decided to have LIT anyway just to cover everything.  Ideally, you'd like your IgG B cells to be at least 30 and preferably over 50.  Given the partial match you have, paternal LIT would probably still be ok, but you'd need to talk to Dr G/Dr T about it before you book, if you decide to have LIT.  

Given the partial match, out of every 4 embryos that you and your DH make, statistically, 1 of them would have the same DQa as you, and be at risk of generating a bigger immune attack.  I think Dr Sher has started recommending putting embryos back 1 at a time if you have a partial match, to prevent the situation where you have 1 unmatched embryo and 1 matched embryo going back (and where the body attacks them both because of the matched one being there which gives the unmatched one a lower chance of implanting than it would have done if it was put back on its own), but I don't think Dr G gives the same advice - I think he just relies on continuing the IL/IVIG drips and retesting your NKs as you go along to monitor for any increase in NK activity.  Dr Sher has a new article about DQa matches on his ivfauthority blog but its kind of depressing.

Your NK activity is slightly raised, but it comes down well with either IVIG or intralipid so you respond well to both - Dr G might say you can get away with just intralipid drips to bring it down (which are cheaper), but you'd probably have prednisolone tablets as well either way.

Your CD3 T cells are high, but there isn't a specific Tx for that (other than the pred/ivig/IL).

Your cytokine ratio/TNFa look ok - so humira probably won't be on the agenda.

You don't appear to have inherited thromobophilia, so unless something shows up in your level 1 clotting tests, you probably wouldn't get recommended to take clexane (or baby aspirin?).

hope this helps


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## thumbelina

Thanks Agate   and  congratulations on your pregnancy  xxx


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## Saffa77

Agate

Interesting information! but what happens when you have a complete DQ alpha match like 1.1, 1.2 me and DP 1.1, 1.2 - and my LAD B and T IgG are 39.6% both and not having LIT does that mean I stand no chance of my embryo/s implanting.  I have just been searching high and low about all this DQ alpha information and just get different views on it all.  I am not keen for LIT this is going to be my second DE first time donors egg were not the best quality and only got to transfer 1 and got a BFN then did all my immune tests after my BFN so surely if body had killed that embie off due to the match my NK's would be high right?  but they are 11% so they good.  I am just confused.  I feel that I am not keen for LIT cos its somebody else's blood and not fancy hot trotting to to Athens to get this done and also the fact that I havent had lots of BFN's or m/cs so I dont know if I really need LIT or not!  and also didnt have time to fit LIT in as am halfway through my treatment already ET is around 14th of FEB - should I worry because of the complete match?  I will however be on Intralipids, Prednisolne, clexane (positive for MTHFR and Factor v and baby aspirin.  I am confused as to why I am taking the steroids and prednisolne if my other results were fine is it maybe cos of my alpha match any advice/words of wisdom/ help would be great.

Sx


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## agate

Saffa 

If you were having OE for every 4 embryos, statistically they would be 

(1.1, 1.1), (1.1, 1.2)match, (1.2, 1.1)match, (1.2, 1.2)

so roughly 50% would be a match and 50% wouldn't - but bear in mind this is only statistically, so it would never work out that perfectly in reality because lots of eggs/embryos wouldn't be genetically normal - because that's how things are.

Your DQas aren't a 'complete match' btw, a complete match would be something like
(1.1, 1.1), (1.1, 1.1) - yours is a 50% match 

but aren't you having DE? because the likelihood is that the donor would probably have a totally different DQa to you?

your theoretical 4 embryos would be something like

(1.1, a), (1.1, b), (1.2, a), (1.2,b)  where your egg donor's DQa was (a, b).

If she is either (1.1, 1.1), (1.2, 1.2) or (1.1, 1.2) then you'd be back to 50% matches again and if she was say, (1.1, 3.1) or (2.1, 3.1) you'd be into 25% matches... I don't know what the worldwide distribution is of all the different DQa possibilities, but I do know that it is at least partially associated with origin, so, apparently 93% of the japanese are (3.1, something), so I'd guess that the more dissimilar your donor is from your origins, then the less likely she'd have a similar DQa to you - you could probably google for the distribution for your background and hers to give some clues, but at the end of the day, unless you get her DQa tested, you'd just be guessing - just on a hunch though, I'd think there'd be a really good chance that hers are dissimilar to yours.

You are right that Drs don't agree on this!  Its all pretty contraversial stuff, but there are very credible studies that do show that DQa matched embryos are less likely to result in a pregnancy and that low LAD levels are associated with repeat pregnancy failure.  Whether or not LIT helps the situation is less clear cut - but there are certainly lots of pregnant greek ladies in Dr T's clinic on LIT days.

Your LAD is really not that bad because at least its over 30, but there really isn't anything to worry about with having LIT because donors are always screened and getting to athens isn't really any more hassle than getting to london (unless you live in london).  I was very hassled about going but it was so much easier than I thought it would be.

I would guess that Dr G has probably prescribed steroids because of 
a) DQa could be an issue depending on what DQa the embryo ends up with 
b) you have had previous failures, so calming down the uterine environment might help you
c) NKs do go up and down all the time as your body responds to various attacks and stresses and you have only measured them once


----------



## Saffa77

Agate - You GURU you very interesting what you have just said!! thank you so much feeling a little better that at least I am only 50% match to DP!  Yeah I guess It will be a risk I am going to have to take with this go (not having LIT)  Think if it fails then may think diferrently about LIT then.  Yes I am having a Donor egg cycle and I am portuguese/south african so am going to IVI in Portugal.  Lets hope she is not similar to me like you say.

Girl how do you know all your immune stuff?  very impressed!

Again thank you and all the best with your pregnancy!

Sx


----------



## Saffa77

Agate - PS sorry forgot to mention Dr G said that if I use donor eggs than that wont make a difference it will still be my uterus and my DP sperm so donor dosent play a part with her DQ alphas. 

Sx


----------



## agate

Saffa77 said:


> Agate - PS sorry forgot to mention Dr G said that if I use donor eggs than that wont make a difference it will still be my uterus and my DP sperm so donor dosent play a part with her DQ alphas.
> 
> Sx


yes, it will be your uterus that determines whether it is a hospital/unhospitable place for the embryo, but the embryo will definitely carry 1 DQa number from your DP's sperm and one from the donor's egg, so, if you accept the theory that embryos with a similar DQa to the mother will be more likely to be attacked by the mother's immune system, then the donor's DQa still plays a part - because whether the embryo will carry the same DQa as you (and be at risk) will depend half on your DP and half on your donor (just like in OE, where it depends half on mother and half on father).

So, I don't think its correct to say that the donor won't play a part. Hopefully, though her DQas will be dissimilar and therefore help your immune issues, so perhaps that is what Dr G meant - in that she is unlikely to contribute to the problem and will probably help??



Saffa77 said:


> feeling a little better that at least I am only 50% match to DP!


well, I guess to be absolutely precise, you'd need to say 50% of what - but it makes sense to talk in terms of how many embryos would have exactly the same DQa as you (if it was OE). If you were saying how many embryos would have at least 1 of your DQa numbers it would be 100%, but embryos that only have 1 of your DQas aren't supposed to be as much of a problem as embryos that have both your DQas (after all, everyone shares at least 1 match with their mother). So a true 100% match would be only where the DQas are (a, a) and (a, a) - I'm sorry if if I'm explaining this badly!


----------



## alibee101

Hi Ladies

I'm off to see Dr G on Monday for my first appointment..any advice  

Shellie - hope your op went ok.

Thank you

Ali


----------



## Chicky Licky

Hi Ali

Glad to hear that you're going to see Dr G. My only advice would be to find out as much as you can on here before you go and ask all the questions you can. It seems that if you have a handful of questions at a later date you get charged a £90 consultation fee for them! 

I had a Saline Hyst done yesterday to find out if I needed an op (I didn't actually have an op although it was that painful, it felt like it!). I picked up my prescriptions too and just because I asked when to take each drug from and to and clarified the dosage, he'd put down a £90 fee on my bill! He'd said to me in the week when I rang, that if I was picking up my prescriptions at the same time there wouldn't be a consultation fee. Once I pointed this out he took it off my bill! 

He's a great bloke and knows his stuff and is worth every penny, but just make sure you get your money's worth at each sitting with him. In hindsight I should have asked for my prescriptions at the follow up consultation and clarified everything then. 

Let us know how it goes Ali

Shellie
xx


----------



## niccad

Thank you all so much for your kind messages. Agate – the info you gave me is really appreciated and has really helped. I find it so much easier to deal with this if I have a plan to go forward and your message really helped. I’m still undecided about what to do next – use the frozen ones, use my last NHS go, or do a private fresh cycle (perhaps with ARGC or DrG). Due to my AMH being low though I’m obviously keen to move ahead sooner rather than later…. 

I saw DrG this morning and he was absolutely lovely (I love that you can phone & see him straight away). He suggested retesting my LAD and also said I should speak to my GP about getting me & DH’s karyotyping done. He also thinks I should have a hysteroscopy as I’ve never had one done & he’s worried there might be some polyps which haven’t been spotted before. I had a uterine biopsy today (ouch!!) and now just need to wait for the results. I’ve booked in to see my NHS clinic next month so will hopefully be able to get an idea of how long the wait is. I guess what I do after that is dependant on the length of the wait… 

After a day in my pj’s yesterday I’m back in the office today. I emailed the people at work who know what I’ve been going through explaining that it hadn’t worked and asking them not to say anything nice or sympathetic to me today as I would probably fall apart. So I’ve been sat here today doing some serious acting – smiling away like nothings wrong. I’m so pleased it’s Friday and I can have the weekend to let my barriers down and the flood gates open again…. This is all so hard…. 

Thanks again for all being so lovely 
Nic xxx


----------



## ells

Niccard        

Ells


----------



## deegirl

bookmarking!!  Will be on soon for chats x   to all


----------



## bluprimrose

niccad i'm so sorry.  sending you cyber hugs.

bpxx


----------



## fi7

Hi all

Can i join you, i am amazed at all the info you have and how you all keep going,  very inspiring.

I am lucky and have a daughter achieved after many miscarriages, finally found NK cells and kept her, but for the last two years my issue has been that i can't get pregnant despite immune treatment.

I have just got my results back and  my LAD is negative 
igm t cells - 1
igg t cells - 1
Igm b cells 29.4
Igg B cellls 14.5


my dq seems ok as no matches.

and tmthfr stuff all negative.

i think that means i need lit but i am not sure about the negative, anyone know?

Also can you get LIT in london or do you need to go to Athens?

Nic sounds like you have had a tough time, I  am also booked to have an endo biopsy in a week or so, how was it, should i prepare in any way?

I also read on Dr Sher's article about k-562 being more effective than the biopsy - has anyone ever heard of this.

thanks so much and big hugs to you all.

fi

nb  having struggled for 3+ years for my daughter i can tell you it is all worth it.


----------



## Peanuts

Hi girls

Niccad - so sorry to hear your news hun    .  Glad you had a good chat with DrG and hopefully you can help to come up with a plan for moving forward with txt.  Well done on facing going back to work, but hoping your taking care of yourself and DH  

Alibarret - Make sure you take any notes from previous txts as DrG will want to find out as much as possible about how you got on.  Plus any results from level 1 tests for him to look at.  Good luck   

Agate - thanks for the info about LIT and marks on the arm.  

Just been having a bit of a panic about not telling my NHS clinic about immune txts, and panicing that they'll find out and cancel my cycle on me!   Where do they put the needle in when they do Intralipids infusions?  Do they use the back of your hand or into your vein in your arm?  I'm a complete needlephob and hate the cannula (sp?) they put in your hand for sedation - it gives me the heebee jeebees!  Plus if I'm getting infusions on day 5 and 10 of stimms will I have bruises when I go in for EC? 

Big hugs to everyone  
Dxx


----------



## Bling1975

Hi everyone,

I just wanted to say hello and introduce myself. We went to see Dr Gorgy this week and are now anxiously awaiting the results from our level 2 tests. All the level 1 tests were fine.

I am from Sweden but we don't have any doctors who really believe in immune testing for recurrent miscarriages, so we had to take a trip to London. Fortunately that is one of my favourite cities and my former home town for 7 years, the only downside is the expense. We would prefer to save every penny for treatments and IVF.

We were diagnosed with a male infertility factor in 2006 and did our first IVF/ICSI in January of 2007. I have since then been pregnant 3 times but lost all between 7-10 weeks. With the help of aspirin we got to see the heartbeat at 8 weeks in the last pregnancy. My husband was diagnosed with testicular cancer in march 2008 and relapsed in November the same year. He is since then completely sterile. We still have 3 frozen embryos from our first IVF, after that we will have to look for a donor. We just hope this will help me keep the next pregnancy and that one of our little embryos want to stay for the full nine months.

I am sure I will have lots of questions when we get our results, and i hope that I with time can answer some myself.

//Anna


----------



## fi7

Hi all

I hope you are all ok this am.  

Anna, good luck with your treatment, i am not an expert but happy to share what i know when you get your results.

Peanuts - i have not had intralipids but had IVIG, mine was in my hand but others also had in the crook of their arm (where they do blood tests).  I also hate them but it was actually ok last time.

AFM - spoke to Dr G this am and looks like I need to go for LIT from my partner.  all a bit of a nightmare as i am 43 and i feel time is running out, if not run out - so to now add another loop is hard.  also my husband is coming to the end of his patience with it all.  Lots of questions (see my post below) so if anyone has any info on the LIT, and athens vs Portland, plus costs/logistics of the whole thing i would be really grateful.  

thanks so much, and keep going all you brave ladies.

Big hugs

fi


----------



## agate

fi7 said:


> i think that means i need lit but i am not sure about the negative, anyone know?
> 
> Also can you get LIT in london or do you need to go to Athens?
> 
> Nic sounds like you have had a tough time, I am also booked to have an endo biopsy in a week or so, how was it, should i prepare in any way?
> 
> I also read on Dr Sher's article about k-562 being more effective than the biopsy - has anyone ever heard of this.


negative flowcytometry just means the average of your LAD results is below 30%. Its not supposed to be as important as whether the B cells IgG is greater than 30 (or pref higher than that).

the K562 test is the same thing as the NK assay. Its a test of how much killing power the NK cells circulating in your blood exhibit. Whereas the NK test done by some labs (not the one Dr G does) just counts how many NKs you have in your blood and the biopsy counts how many NKs you have in a sample of uterine tissue. I can understand why Dr S would say that the NK assay is better than an NK count, but I can see some value in having the biopsy, especially where there is nothing obvious from the circulating blood (but then, I'm not a doctor!).

You can get LIT in Athens or London (and Dr G is hoping to start offering LIT in London, maybe as soon as march, but it sounds that it is very difficult for him to get the lab support that he needs arranged.



Peanuts said:


> Just been having a bit of a panic about not telling my NHS clinic about immune txts, and panicing that they'll find out and cancel my cycle on me!  Where do they put the needle in when they do Intralipids infusions? Do they use the back of your hand or into your vein in your arm? I'm a complete needlephob and hate the cannula (sp?) they put in your hand for sedation - it gives me the heebee jeebees! Plus if I'm getting infusions on day 5 and 10 of stimms will I have bruises when I go in for EC?


Dr G will usually let you choose where he puts the cannula for IL/IVIG - dorsal hand or cubital (inner elbow). Don't worry about bruises, unfortunately by then you will probably have quite a few from blood tests etc. No one will think twice about bruises. Don't look (while they put the cannula in) and find something to repeat over and over in your head until its done - distracting yourself makes it easier.



fi7 said:


> AFM - spoke to Dr G this am and looks like I need to go for LIT from my partner. all a bit of a nightmare as i am 43 and i feel time is running out, if not run out - so to now add another loop is hard. also my husband is coming to the end of his patience with it all. Lots of questions (see my post below) so if anyone has any info on the LIT, and athens vs Portland, plus costs/logistics of the whole thing i would be really grateful.


personally, after LIT in london and athens. I'd definitely go to athens, or you could see how things go with Dr G setting up his LIT clinic (might be london or egypt). look at the LIT thread to see who is going out on 9 feb (anyone who went out for 1st lit on 12 jan should be going back - ask them to take your LAD and DQa to Dr T and book you in. Paternal is 500 eu (donor is 600). you need to take cash. Dr T recommends at least 2 doses 4 weeks apart. if you can cope with the flights in one day you can get the BA one from heathrow that gets you in at 1pm something and the one back at 19:05. You need to be able to get to the clinic by about 2.30pm (and you should allow about 1 hour to get off the plane and get the metro (v easy) to the clinic). Getting the same day flight is a bit tight and tiring but its easy to get accommodation and flights on expedia or ba.com. When you have your 1st lit, its easy to book your 2nd. metro tickets from airport to clinic (stop is called evangelismos - plenty of info on metro in english) are 10 Eu for 2 people each way. any hotel in plaka, kolonaki, akropolis (or basically anywhere in central athens will be convenient for the clinic which is 5 min walk from evangelismos metro. Blood tests req for your DH are HIV 1&2, HTLV 1&2, EBV, CMV, Hep B surface antigen, Hep B core antibody, Hep C, Hep A, AST & ALT (liver function), FBC. For athens, the test results do not have to be brand new, so you probably have some of these done already which will cut the cost. almost any question you can think of about LIT will be answered on the LIT thread under investigations and immunology.

Ladies: bad night. ended up in A&E for hours after another heavy bleed and then had to go see Dr G for scan and IVIG this am (he is so lovely when you need him in an emergency). you are not supposed to have ivig on an empty stomach but that's tricky when you are puking up because of MS! so glad to see baby still ok and wriggling on scan but so much blood was terrrifying. another sub c haematoma so back to bed rest (not that I ever really get around much anyway!). I guess someone fitter than me would probably be ok to keep on their feet but I need all the help I can get. please let this be the last scare, I just want baby to be safe and stay with me!!!! Off the clexane again for the timebeing and will be staying on cyclogest and gestone for a bit longer.


----------



## Zeka

Oh Agate, how terribly distressing for you. You must have been beside yourself with worry. I hope Dr G has managed to put your mind at rest a little. Be safe and rest up. Thinking of you and LO    

Niccad, hope you are ok honey and starting to feel a little brighter (as much as is possible   )   

Hi Fi  

Love to all,
Zeka x


----------



## fi7

Agate, thank you so much you are a star, or should i say a gem.  I have been in such turmoil today but now feel better.  What seemed like an impossible mountain now feels possible.  

I can't believe you are still helping others like me, when you had such a crap night.  I have everything crossed for you and hope that this was just a nothing.  I do not know your history - but it is clear that you are carrying a little fighter and that is just what you want, as they fight and stick all the way.  stay strong, rest up lots, but remember the little bundle is very well protected in you so will be fine.

Niccad - i really hope you are feeling better.  after lots of miscarriages i did not have my daughter until i was 41 and i am still hopeful for another 2 years later thus i think you have time. do keep going it is worth it.

AFM well we are now onto planning our trips to greece, and my even make a few days of .  just now need to get booked in and make the arrangements.  i keep thinking of a quote someone has on here that courage is just a few small steps, and am trying to take those steps.
If anyone hears of anyone going out to athens soon please let me know

big hugs to you all and take care and keep positive

fi


----------



## ells

Agate hunni     , I really   that this will be your last scare hun, what a nightmare.  Are they able to see where the bleed is and if its reducing in size?  I hope you have a relaxing weekend and keep your feet up   .

Niccard, I think you are very strong being able to return to work and put on the mask to keep smilling, I really dont know how you did it.   I am glad you were able to see Dr G and have got the start of a plan.  I really   that you feel better soon hunni.  You will get there. 

BP hi hun, how are you feeling?

Dee, good to hear from you, hope you are well?

Hi to everyone else, hope you are all okay.

Nothing new to report from me, apart from getting a copy of our px from the clinic today.  It seems they have forgotten to give me gestone so will have to ask about that when we have our set up appointment on 11th Feb.  I am sure it wont be a problem, just have to remember to ask for it   .

Hope everyone has a nice relaxing weekend.

Ells


----------



## mag108

Agate: Gosh what a day (and night) you poor thing. But my oh my you are past the 12wk danger zone so fingers crossed all will be good and the scan sounds very positive xxx Amazing that you have the energy and clarity to post!

Nicaad: really sorry hun, sending you a big hug and hope you are getting well taken care of,

hi Ells, BP, dee, Sobroody, Pinpin, blonde1, diane, lou, shelie, Bling, peanuts, berry 55, newday, saffa, Sarahh, and everyone else...

happy weekend!


----------



## thumbelina

Hi ladies  

Just popped on to send Agate all my love,    and    . I cant imagine how scared you must have been.

Fi7 - I have my appointment with Dr G on Monday to discuss my immune test results. It looks like we will need lit tx so want to go out to athens asap    

My head is pounding at the moment so please dont think Im rude for not doing more personals.

A big   to everyone else.

   and     to all

Love Thumbelina xxx


----------



## mandyb

hi guys

Just marking the thread as been recommended as I have unexplained infertility and thought you guys might be able to help and give me some ideas on where to go next if we decide to do any further tx in future but first I'm off to Oz for 2 years!

Thanks

Mand x


----------



## Pinpin

Hi girls,

sorry i have not posted more regularly 

I just wanted to send some    to Agate and now you've had the ivig drip yesterday i hope you're resting up and with the help of our wonderful Dr G the baby will be fine 

Fi - this is the link to the LIT thread as I thought you might easily find someone on here who is going to athens soon to book you an appointment.

http://www.fertilityfriends.co.uk/forum/index.php?topic=95742.1335

Love to all

Pinpin xx


----------



## Ourturn

Agate - just wanted to send you big       glad baby is ok. Did Mr G offer any explaination? Hope dh is looking after you both.

Anna x


----------



## niccad

Agate - I hope that you are resting up and taking it really easy. What an awful scare to have and I can only imagine the stress of trekking to London for yet more IVIG. Agreed that DrG is sooo lovely.    for you. thinking of you xx

fi7 and bling - welcome to the thread. fi7 - the endo biopsy is really uncomfortable but you don't need to do anything to prepare. It needs to be done premenstral (but I'm guessing you know that). 

Peanuts - I had the same issue with my FET NHS cycle. I didn't tell them about all the immune drugs. Luckily they didn't notice any of the bruising. The only time they did was at ET as I had lots of bruises on my tummy caused by the clexane (however my NHS use a lab across town so it was a completely different doctor so no questions). I'm sure you'll be fine, but it is horrible feeling like you can't be open about it all xx

thanks again for all your lovely messages 
Nic xx


----------



## Saffa77

Agate -   poor you having to go through that scare!  Hope you are resting up!

Ladies a quick one on clexane:  Am due to start the injection 40mg tomorrow.  Is it best to take in the mornign with my prednisolne or do I take it at night?  Any tricks and advice on injecting it would be good too!  

Thanks.

Sx


----------



## deegirl

Agate - So glad that all is ok but what a scare that must have been.  You are so fortunate that you are close enough to Dr G to get there in an emergency.  That's a big plus point.  I guess if that happened to those of us who live further away, we would just have to get scanned at our local hospital and then fax the scan to Dr G.  Plenty of rest Agate.  

Ells - Hi hun, hope you're well.  Have you taken all your humaria injections yet?  I'm well thanks, just stressing about getting LIT booked with Dr T and cannot as he hasn't got his schedule for March or April yet!  The prices of flights are just going up and up.    Remember to get that Gestone!  What clinic are you with?

Mand - welcome    Hope you get all the help you need on here and that you have success.  

Fi7 - Hi hope you get your LIT sorted.  I'm due to get paternal LIT also.  I can give you a list of tests which need done which Sarahh gave me.  My husband got them all done under NHS through our GP last week!  

Niccad - Still thinking about you and the hurt you must be going through.  I agree that it's easier if a plan forward is somewhat in place.  It's great that Dr G is so interested in us all individually that he is available to speak to us immediately when we need him.  I think we should all try not to phone him unless we really have to so that he has time to answer the 'emergency' calls.  Hope the results of your biopsy are ok.

Saffa - I don't THINK it matters whether morning or night as long as same time each day.  It needs to be injected into the fatty bit of stomach and out towards the sides and not too close to belly button.  I think you can also inject it into fatty bit of thighs.  

Hi to everyone else - mag108, sobroody1, Pinpin, peanuts, donkey, Sarahh, Zeka, ShellieG, Bling, Thumbelina, Mandyb and all others.  

Only 2 weeks to Valentine's Day!!!     

Dee x


----------



## peg2

hi there!
can i join this thread? just seen mr gorgy for level 2 blood tests! waiting for results ! shld get them wed! 
fingers crossed i don't need too much imune tx as we are due our 7th cycle of ivf end of feb!
xxx
peg


----------



## Louiseb26

Agate - Loads of     for you.Do they know where the bleed is coming from?
I'm sorry your having to go through this...what a scary time for you.I'm glad you and the baby are OK.

Hi to everyone...hope you all had a lovely weekend  

Lou xx


----------



## agate

thanks ladies for all your kind thoughts - esp pinpin - I think you've been through similar stuff and you got through it which gives me faith in Dr G's rescue abilities.

the bleeding is thankfully down to smaller black stringy clots and brown spotting now. but I'm very cautious about moving around the house and am planning to stay in bed as much as possible for next 2 weeks - I still feel tender and it seems to hurt less if I stay absolutely still - so I take that as a sign that is what I need to do as much as I can.

Just checked LO's HB and its about 164 which is fine and it seems to have good variability (which is supposed to be good too).

The bleeding is from a subchorionic hematoma - like a bruise between the placenta and the wall of the uterus - its unfortunately a very common problem with immune pregnancies and is treated with IVIG to try and calm the NKs and TNFa down.  It shows up on the scan as a sort of moving grey shadow on the edge of the sac.  The best thing you can do for it is rest, loads of fluids and IVIG if you can get it, I think.  The hope is for the IVIG to calm everything down, for the rest of the blood and clots to 'bleed out' and for the hematoma to shrink and heal.  That's what would be the good outcome.

Unfortunately, its at least a 9 hour round trip each time we go to Dr G's so its not so simple for us to get there, but to get a scan here after 1pm on a friday is just not possible and it eventually dawned on me that if the baby was still there and there was an SCH I would need IVIG  - because that's what Dr G did the first time - so we eventually realised the trip had to be done even though I didn't want to travel.  Unfortunately, non immune docs seem to feel there is no urgency in getting someone a scan because I think they don't believe anything can be done - but I really think that with IVIG something can be done - so long as the baby is still wriggling well and its HB hasn't slowed down.  I hope I am right. 

Saffa: clexane - if it fits in with your lifestyle, 1st thing in morning is better - only because if you ever need to get a clotting test it needs to be 2-3 hours after clexane. try to flick the syringe to get all the air to the top (so it goes in last - it helps to avoid bruising if you do put the air in last and it doesn't sting as much - don't get rid of the air bubble like other injections - inject slowly - don't rub afterwards.  sometimes it stings, but other times its fine so even if you get a 'hurty one' just keep going - don't withdraw the needle (because you'd waste that syringe) and don't panic because next time will probably be fine.  don't panic if you bleed a little from the injection site - sometimes you do and sometimes you don't but keep a pack of cotton wool pads to hold over it afterwards (but don't rub - completely unlike gestone which needs a good rub after).


----------



## Saffa77

Hi 

Agate thanks for the info.  I am not going to be getting any clotting test done?? Dr G never mentioned anything about it to me?  Is it common/necessary to get tested?  What is the testing checking for or is it ok to take this clexane without testing?  Thank you for the tips will do mine tomorrow morning.

Sx


----------



## Saffa77

on the pamplet this is what it says about clexane
Warning!
you should have regular blood tests to monitor the numbers of blood cells called platelets in your blood and also that the your doctor may also want to monitor the level of potassium in your blood while you are having this medicine, particularly if treatment lasts for longer than 7 days.  Should I ask Dr Gorgy?-


----------



## mag108

agate; great you are making sure you get all the rest you can hun.
x


----------



## ells

Agate, that is a long trip to Dr G hunni   , glad the LO's heart beat is nice and strong and that you have been able to rest up.  I really do   that this will be your last 9 hour trip.  

Ells


----------



## agate

thanks ells

Saffa: I don't think Dr G normally suggests you get clotting tests done routinely - although I don't know what dose you are on and maybe if its a high one you should ask Dr G or your GP.  I would guess that your GP would be happy to do a simple clotting test if you are concerned. 

mainly, I've only heard of him suggesting clotting tests if you get problems like excessive bleeding/bruising (bruising at the injection site is normal - its if you get unexplained bruises elsewhere that you need to be vigilant), but its easier if you have a schedule you can stick to because its not so good to vary your timetable a lot (like switching from morning to nighttime - so just in case you need to do a test later on, a morning timetable would make it easier).


----------



## deegirl

Agate - 9 hours, what a trip    At least it's worth it for peace of mind and sound advice.  I really hope that that is the last scare and that it will be plain sailing from here on in.  I'm beginning to worry already and I'm not even pregnant!  What would I do if that happened to me?  I live in N Ireland so there's no way I could get to Dr G in a similar situation.  I guess if I had a private gynaecologist they would scan me and then fax the scan (can you fax a scan?) to Dr G??  Then I could get IVIG with HAH?  What do you think Agate?

Dee x


----------



## Saffa77

Thanks Agate - I am on 40mg clexane - dont think thats too high?? but he did mention I go on 60mg if I get pregnant because I am hetero MTHFR and positive for Factor V Leiden.  Am taking my  first clexane tomorrow morning.

Sx


----------



## berry55

Hi girls,

sorry for the me post, i will b on later with personals. 

I have to do my 2nd humira injction today and i have booked to see Dr G on monday 15th of feb for a consultaion and to have my TNFa checked. My appointment is at 1pm (i need the time to travel down in the morning) Is that too late for the Bloods or does it matter?? 

Berry xxxx


----------



## agate

Berry - it depends on what time TDL are doing their fedex that day - it might be ok, or else they might have to keep the bloods overnight to send the next day - either way it will be ok because it'd only be the same as if you done them at home on mon and posted so TDL got them on tues.  if you end up with extra time on your hands, maybe go to TDL first and get the bloods drawn if it works out convenient.  TDL usually fedex the bloods at about 2pm but it does vary.

Deegirl:  I think so long as you can get access to a scan, there'd be no problem.  Dr G wouldn't need to see the scan picture- he'd just need to know whether it showed an SCH and how big and you'd need to get your IVIG sorted asap - or else maybe you would just take the decision to go ahead with IVIG without getting a scan if its v difficult to get a scan quickly (ivig is expensive so not everyone would want to take it unless they knew the baby still had a chance which is what the scan tells you - but if you had no choice, I think you'd probably go ahead with the ivig regardless?).  You need to be able to get transvaginal scans until you get to 16 weeks ish - you can't tell enough from transabdominal ones.  I don't know what access to NHS scans is like where you are.  It varies massively from one place to another in the UK.  I understand its easy to get a scan in London for example. 

Saffa: no I don't think 40mg is a v large dose, but maybe you should speak to Dr G about checking your clotting when he puts your dose up -obviously if you have any concerns in the meantime about unusual bruises etc, you'd want to speak to him anyway.


----------



## Newday

Can I ask what Gestone is used for?
Dawn


----------



## thumbelina

Hi ladies  

Agate - Glad ur bubba has a strong heartbeat. I hope things have settled down for you hunnii       

Peg2 - Welcome hun - good luck on receiving your results. we cycled together last Feb. I hope you get some answers. I certainly have    

Berry55 - Hi hun. I cycled with you aswell last year.. good luck with ur next cycle    

Niccad - Hope ur okay hun    

Mandy B - Welcome hun      

Blue Primrose - We cycled together in August. I am so sorry you didnt get the result you wanted hun.. What is ur next step       

Dawn - Gestone is used with or instead of cyclogest or crinone gel. It is a more effective way of getting progesterone    .

AFM - I had my follow up with Dr Gorgy today. He advised that although I respond better to intralipids  to alternate intralipids and ivig. I think I may have to just go for intralipids as ivig is so expensive and this whole tx is costing a fortune. I hope that this will be okay. He also advised me to do lit with my partners blood first and if that doesnt work to use dornor. I cant help thinking this would be a waste of time and money as we share one of the numbers so will be going down the donor route straight away. He said it may be an idea to have a biopsy of the uterus in case I need humira and it didnt come up in the immune testing. Has anyone had this done which showed humira needed to be used when the rest of the immune tests didnt indicate it? He has also advised that I have a saline sonography or something I cant remember the whole name. He advised me to have it nearer the time of tx as even if it showed nothing up it cleans ur insides out but the down side is if anything shows a hysteroscopy would need to be done to remove the polyps or cysts. My mum had a normal internal scan when she had polyps and it showed up on that. If I had them wouldnt it have been detected earlier in the internal scans?.

Sorry for all the questions, I am just a little confused.

A big   to all I have missed.

  and    

Love Thumbelina xxx


----------



## peg2

hi thumbelina!  yes i remember cycling with u last year! better luck this year eh! 
hi to everyone else too!  
wot is lit? and intralipids?


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## thumbelina

Peg2 - Lets hope so hunnii     - LIT is when they inject you with white blood cells if your levels are low. This is so that your body will recognise that it has to protect the baby. Intralipids is a drip (I think steroid) but Im not certain of this which lowers nk, CD3 and other cells. Im sure one of the other ladies will be able to explain it to you better than me. Its all very confusing but dr g is lovely. He will explain everything to you no matter how many times you ask and he will have a laugh with you. Do you have a follow up with him on Wednesday or do you still need to arrange it?

xxx


----------



## agate

thumbelina said:


> Peg2 - Lets hope so hunnii   - LIT is when they inject you with white blood cells if your levels are low. This is so that your body will recognise that it has to protect the baby. Intralipids is a drip (I think steroid) but Im not certain of this which lowers nk, CD3 and other cells. Im sure one of the other ladies will be able to explain it to you better than me. Its all very confusing but dr g is lovely. He will explain everything to you no matter how many times you ask and he will have a laugh with you. Do you have a follow up with him on Wednesday or do you still need to arrange it?
> 
> xxx


LIT is where you are injected with someone else's white cells to try to produce an antibody response - all white cells carry a DQa marker (a sort of fingerprint) on their surface, and for pregnancy, the theory is that you want to be able to manufacture antibodies to cells with the same DQa marker as your DH - because one of his DQa markers will be carried by your baby's fetal and placental cells - and these antibodies will help protect the fetus and placenta from immune attack. By injecting your DH's white cells, the hope is to prime your body to make these antibodies ready to protect/not attack an implanting embryo.

intralipid is soya oil which is suspended in saline and is given by drip.it does not contain steroids. it was developed as intravenous nutrition, but then it was found that it also calmed down some aspects of the immune system - presumably by increasing the fat content of the circulating white cells - which reduces the killing power of cells like NKs.

IVIG also reduces the killing power of NKs but by a totally different method. IVIGis a solution of huge numbers of different human antibodies in saline and is also given by drip. this flood of antibodies helps to normalise the whole immune response.

its worth joining the reproductive immunology group on yahoo groups because then you can access their files which have lots of information and answers to questions like this.


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## thumbelina

Thanks Agate.. Will do.. Im sure I will get there in the end


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## agate

thumbelina said:


> He also advised me to do lit with my partners blood first and if that doesnt work to use dornor. I cant help thinking this would be a waste of time and money as we share one of the numbers so will be going down the donor route straight away. He said it may be an idea to have a biopsy of the uterus in case I need humira and it didnt come up in the immune testing. Has anyone had this done which showed humira needed to be used when the rest of the immune tests didnt indicate it? He has also advised that I have a saline sonography or something I cant remember the whole name. He advised me to have it nearer the time of tx as even if it showed nothing up it cleans ur insides out but the down side is if anything shows a hysteroscopy would need to be done to remove the polyps or cysts. My mum had a normal internal scan when she had polyps and it showed up on that. If I had them wouldnt it have been detected earlier in the internal scans?.
> 
> Love Thumbelina xxx


maybe you should try to ask Dr T whether he would recommend paternal or donor LIT for your DQa and LAD (most of the studies on LIT were done on paternal - so most of the evidence of LIT helping to achieve pg was done on paternal)? But then, I don't understand why donor works.

I think if you look back over previous posts you will find that several ladies have had the biopsy which indicated they needed humira - Dr G tends not to recommend the biopsy only if your bloods already show that you need humira (so nothing extra would be gained from the biopsy) - but of course its up to you.

I think on a standard transvag ultrasound, polyps, small fibroids, septa and smaller hydrosalpinges do not always show up -US only shows clearly things that are filled with fluid - so polyps/fibroids/septa sometimes have to have fluid around them in order to show up on the US - which is why Dr G recommends a hysteroscopy or a saline contrast hyst ultrasound. From memory, I don't think the saline scan was very expensive and was very much worth having although it was uncomfortable.


----------



## thumbelina

Thanks Agate.. You have given me something to think about. xxx


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## deegirl

Many thanks Agate for the info, it's useful even to know the type of scans and their limitations (I didn't know that before).  I'm not sure how easy it is to get transvaginal scans done here either but I'll check all that out in advance of my cycle with Dr G in July.  I'm sure it's readily available if willing to pay for the individual scan or if paying a gynaecologist for pregnancy support.  Hope so.  I hope you have had a relaxing day without any stress or worries.  I'm sure your DH is providing you with lots of TLC!    

Dee x


----------



## peg2

thanx agate and thumbelina! you are very knowledgeable!!!!
xxxxxxxxxxxxx


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## thumbelina

Peg2: Lol Im not hun, I got it all wrong but with Agates help I am beginning to understand things more.. Its all a learning curve and I will get there in the end. Hope ur ok hunnii.. Good luck for your results and let me know how you get on     xxx


----------



## agate

deegirl said:


> I'm not sure how easy it is to get transvaginal scans done here either but I'll check all that out in advance of my cycle with Dr G in July.


transvag is the one you are used to from ivf - the dildocam US
transab is the belly one you see pg ladies having on tv - its fine for later in pg but is not sensitive enough to show up SCHs/issues in early pg
there seem to be private scanning places everywhere (even nearish here!) but they concentrate on the transab scans you can have later to give you pretty pictures of the baby rather than the ones you want early on.


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## Saffa77

Ladies is it only gestone that helps with high CD19+5?  or does steroids also help bring them down?/


Sx


----------



## agate

Saffa - I don't THINK gestone brings down your CD19+5+, but it can counteract the problems that a high CD19+5+ brings because it often means you have a higher than ideal level of anti-hormonal antibodies. Maybe read this page from Dr B's site which explains why extra progesterone is helpful for immune related fertility issues? He favoured pessaries though rather than injectable progesterone (Dr G likes to use both, as does Dr S). I don't know whether steroids bring down CD19+5+

http://www.repro-med.net/repro-med-site2/index.php?option=com_content&view=article&id=25rogesterone-levels-during-pregnancy&catid=2ages-ett&Itemid=33


----------



## Saffa77

Agate - once again thank you for your very helpful advice and link!  This makes me feel better why does Dr G then think/say that gestone is better as he said to me that it gives you an even distribution throughout the day that is why he recommends that.  But now that Beer says this then it makes me happy.  I think I am going to stick to my vagina suppositories then.  

Would it be bad to take like one extra one in the pm between my 4 bullets in the am and 4 just before bed?  Can one ever 'overdose' on progesterone you overtake it you think??

Did you have gestone Agate?

Sx


----------



## Peanuts

Hi Agate

So glad LO's heartbeat is strong and your bleed seems to have settled down - make sure you take it easy and stay in bed.     How are you managing to give all this wonderful advice from your bed - I hope you're not overdoing it!  

Girls - thanks for asking all the questions that have been going through my mind and provide lots of helpful hints and tips.

Berry - hope the Humira went ok today  .

Big hugs to all  
Dxx


----------



## sarahh

Hi all, sorry not been on much - been really struggling with the recent latent TB thing and just wondering whether this is just all too much - I find out tomorrow a bit more about the TB and then the consultant decides whether to treat me or not - but if not then the pred increases the likelihood of the latent TB becoming active and I guess that IVIG etc. may also increase the likelihood as it obviously lowers your immune system.....but I think they are unlikely to treat me because I'm close to 35 and that is the cut off age for treatment for latent TB so  do I risk getting TB & then passing it to the DD I already have or just give up this very difficult battle now?  See, I told you I was struggling!  

I'm really sorry I haven't been on to support others but I've just had to stay away for a while to give myself some thinking space!!  

Niccad, I did see briefly you've had another pants BFN.  So sorry hon, it never gets easier does it?  

Sobroody - hope last wk went well & hope the stimms are ok (think you start tomorrow).  

Louiseb & Shellie - good luck for next Tuesday!  

Ells - hope the Humira has been ok for  you. 

Sorry to everyone else I've missed! 

Sarah x


----------



## agate

I don't know Saffa, but if you are talking about 8 (gosh that sounds like a lot if they are the 400mg ones) pessaries a day, I suppose you could spread them out through the day?  But if you've been told that that is the way to go, I'd stick with what your Doc told you. I'm still having 400mg cyclogest morning and afternoon and then gestone at night - but my CD19+5+ hasn't been high until now - so I wasn't supposed to need much prog.

Am probably stating the obvious here - but the more often you are having to put in pessaries then the more important it will be to have scrupulously clean hands for the job (because you don't want to introduce any bugs -  they would wake your NKs up)- you can get hibiscrub (from boots I think) to wash your hands with to be on the safe side - it kills more bugs than soap and water or alcohol gel.   (you can decant some into a smaller bottle to travel with). 1 bottle lasts ages too - its the same stuff that docs and vets use - pink and smells like vets... just a thought.

No idea about whether you can overdo the progesterone, but I would guess its possible to overdo any drug? progesterone does not make you feel good(bloated, gassy, constipated, headachy?- so I would assume the more you take the more grotty you will feel?).  Not sure what happens if you take even more than normal.

all docs have their own ideas - it was only a few years ago that IVF clinics started to agree that patients needed progesterone at all - and there is still no agreement even in mainstream clinics about how long progesterone should be continued for - some even stop it at pg test date (most continue to 9-12 weeks).

Most studies for most (not immune Tx) patients show no difference in IVF success rates between patients on injectable PIO vs pessaries/gel - except one that found that injectables were of more benefit than pessaries/gel for patients on antagonist (cetrorelix/ganirelix) Tx.  I think this is only because they have more even absorption than pessaries/gel - I guess when you use pessaries sometimes you absorb more than other times because of where they are placed and how they melt etc. 

Sarahh:  corticosteroids (eg pred) do lower some of your immune responses (although their effect is apparently very complicated because they boost some responses and depress others).  Humira lowers 1 specific part of the immune response i.e., TNFa.  IVIG is not supposed to suppress the immune response and is not supposed to make you vulnerable to infection in any way.  It is supposed to moderate your immune response to make it more balanced,  but it doesn't suppress it.  IVIG is often given to patients who are very vulnerable to infection e.g, transplant patients, patients with MS.    Apparently, IVIG is actually protective against TB infection and has been/is being investigated as a treatment for TB.

Personally, I think you have to get some proper advice on how likely it is that your latent TB could become active and how treatable it would be if it did.  Then you have to look at all the separate medications that are being proposed and look at the risk/reward of each separately.  My hunch is that you will find out that the risk of activating the latent TB is not huge and it is very treatable but hopefully you will be able to get an expert to sort this out for you and give you workable advice.


----------



## agate

Peanuts said:


> How are you managing to give all this wonderful advice from your bed - I hope you're not overdoing it!


Thanks peanuts - all from bed, honest. laptop. furry support group with tails. pomegranate juice and water. occasional snacks.


----------



## Saffa77

Hi agate - No mine are 100mg Utrogeston which is the same as cyclogest - so its 4 am and 4 pm making it 800mg per day.

Yes I guess you are right in everything you mention about it making you bloated gassy etc so think will just stick to what the doctor says.

Sx


----------



## ells

Hi SarahH    Sounds like you have been doing a lot of thinking and stressing about it all hun.  I hope that you can get some useful advice and make the decision that is right for you.  Have you spoken to Dr G about it to get his view?  How did you DH's SA and tests go? I have been okay on the humira got the odd niggly side effect - bit of a cold, sore throat and achey knees so not too bad.  It seems to have helped my cronhs but I think because I have been ill with this for 16-7 years and havent had a normal bowel habbit for as long my body isnt quite used to getting to normal IYKWIM so its a little sore at the mo but is improving everyday.  I hope when I get my levels rechecked that my TNF's have come down to normal levels.  I hope that you get it all sorted out for your own peace of mind.  

Agate, glad to here that you are on total bedrest and you have some good company   .

Berry how are you doing?  How was the humira jab?

Dee hunni, I have investigated the local scan places just ot be on the safe side because of my health issues I am guessing I need to make sure I know where to go just in case.  I think the positive thinking is great, I feel a mantra coming on - this one will work, has worked and will not fail!   .  I hope you find someone locally that can help you if you need it and I hope that they dont charge the earth for it either.

Peanuts, sounds like you are feeling positive and clear about this tx   .

Nicc how are you doing hunni    .  Are you at work again this week?

Sobroody, how are you feeling hun?  How are the jabs going?

BP - Hi hunni, how are you feeling?

Hi to everyone else, sorry my brain has gone a little bit mushy - going to write myself a list of everyone on the thread so that I can remember you all, hope you are all well.

I dont know if this will be helpful or even if you could benefit from this but for those ladies that need humira, I just got my claims advice statement from BUPA and the hospital charge £285 per injection, which I believe is about £100 less then the other chemists/drug suppliers.  I dont know if you could get a private px and take it into your local BUPA hospital and see if they would quote you and order it for you.  Dont know if its something you can do but worth a try if it can save some pennies. 

AFM my drugs will be arriving tomrrow and I have to take my first provera on 10th Feb.  Set up appointment is on 11th so I will know what my plan is then.  We are seeing Dr G on Tuesday at 12 anyone else going in?

Ells


----------



## berry55

Hi girls,

Sorry i have not been on so much the past week or so. Things have been really busy here and my head has been all over the place. 

ells- So glad ur drugs will b arriving tomorrow and you will b starting very soon!! Its really exciting when we r about to start isn't it!?! I have been ok on the humira, but i have been noticing that (sorry for the TMI)  my bowel movements R  really normal. For the past year i have been really really constipated and its been so  so bad that i actually have a tear down there and its always bleeding. My bowels have never been like that b4, it all started when i started my 1st ICSI, i think its all stress to be honest. But just now it has been really normal, so i am hoping that its due to my TNFa coming down!! I took my 2nd humira yesterday and so far nothing. I felt a little ill last night and i thought i was going to be really ill this morning but i'm fine  

Agate- Thanks for the info on Dr G and the times for bloods. I'm now booked in for 12pm as we r gonna be staying the night before in London. Glad ur getting good bed rest  

Peanuts- Glad everything went well with ur consultation with Dr G. I have 1 booked for 15th of feb, so i'm gonna ask him if he thinks i should b on pred & clexane. Hope we can meet up nxt week  

Niccad- how r u doing hun?  

Saffa- How r u? hope everthing is going well xxx

Thumbelina- I remember when i cycled with u last year.... hope this is the missing link that we need!!! How r u finding all of the immune stuff? its rather confusing isn't it? I'm just getting my head around it all now. take care xx


Hi to everybody else!!! sorry if i have missed you.  

AFM- Had 2nd humira injection yesterday, it went ok. I am finding the injections so so sore when i do them. Is that normal? I am injecting into my tummy which is new for me. I made an appointment with Dr Gorgy for the 15th of feb @ 12pm, any 1 gonna be there I need to talk to him about what protocol to go on for my nxt icsi as my clinic want me to do long protocol as they said its the only thing they think can make a diff.... but then i have been thinking... if i am getting gd quality and quantity of embryos on the short cycle why should i put my body through more drugs if its not the reason i'm not getting preg and staying preg. So i want to see what Dr G will say. I also want to ask him what he thinks about me going on prednisolone and clexane again.  I'm sure there are a few more things i need to ask him, i think i will need to bring a list so i dont forget lol   

Love to all Berry xxxx


----------



## Saffa77

Hi all

Berry - am good thanks started my clexane today EEEEk looks like donor is ready for EC on Monday!!! so ET will be Thurs so have Intralipids booked in for thursday this week EEEK moving so quickly now!!!

S


----------



## DippyGirl

Agate - sorry to hear of your recent drama, I'm a bit naive and assumed you were home and dry but sounds like some quick thinking and all that knowledge paid off!!!  Hope that you are recovering and sending you lots of     for an uneventful rest of pregnancy.  

I wonder if I can ask another question - should have checked with Dr G last week but forgot about my list of questions - I had a low LAD, amoungst other things 'Dr' Agate and Dr G suggested LIT.... just reading somethig on the Dr Beer book on LIT and noticed that in one of the original studies Rh negative ladies were eliminated from the study.  I'm Rh O negative and DH is Rh O positive - can anyone tell me would this have impacted on the LAD result?

Hi to everyone else   recognise some of the names from the LIT thread - thanks again Agate for referring me to that - about half way through, it has been said before but it is a lovely friendly thread and I LOVE that you went on masse to Athens   

best wishes D x


----------



## agate

DippyGirl said:


> I wonder if I can ask another question - should have checked with Dr G last week but forgot about my list of questions - I had a low LAD, amoungst other things 'Dr' Agate and Dr G suggested LAD.... just reading somethig on the Dr Beer book on LIT and noticed that in one of the original studies Rh negative ladies were eliminated from the study. I'm Rh O negative and DH is Rh O positive - can anyone tell me would this have impacted on the LAD result?


I don't THINK it would have impacted on the LAD result, but it would have added a confounding factor (an extra factor that means the groups who do have the LIT and don't have the LIT are not as comparable) to the study which would have made it less valid because the Rh neg ladies might or might not have needed/wanted an anti D shot (rhogam) before their LIT.

The blood for LIT is washed to get rid of the red cells (the one that cause the Rh reaction when an RH neg person is exposed to blood from an Rh positive person) - so there is supposed to be only a very small risk of triggering an Rh sensitisation - but some Dr's (and I think those in the US that Dr B worked with) say you should have a rhogam shot before LIT. Am not sure whether Dr T recommends an anti D shot or not (or how long a previous anti D shot can be relied on to protect you), or how much it costs to have the shot with him if applicable. I think Dr A requires his Rh neg ladies to have the shot if their DH is Rh pos. The other alternative would be to have donor LIT in athens from a suitable Rh neg donor. I guess if you decide to do LIT you'd need to speak to Dr T (or Dr G) about whether you need a shot.

The NHS price for the anti D shot seems to be about £30 so maybe you could persuade your GP to give you a shot if you need it and they are very nice?

I didn't know until recently that the anti D shot is manufactured in a similar way to IVIG - IVIG is a mix of lots of antibodies separated from human blood, whereas the anti D shot is an extract of just the one antibody (also from human blood).



berry55 said:


> I have been ok on the humira, but i have been noticing that (sorry for the TMI) my bowel movements R really normal. For the past year i have been really really constipated and its been so so bad that i actually have a tear down there and its always bleeding. My bowels have never been like that b4, it all started when i started my 1st ICSI, i think its all stress to be honest. But just now it has been really normal, so i am hoping that its due to my TNFa coming down!! I took my 2nd humira yesterday and so far nothing. I felt a little ill last night and i thought i was going to be really ill this morning but i'm fine


Stress and TNFa are linked - some types of stress cause rises in TNFa - long term 'unavoidable/uncontrollable' stresses provoke rises in TNFa, e.g., lab animals who repeatedly have nasty tests done to them show raised TNFa compared to animals who don't have the same things done to them, or who are allowed to avoid the nasty things by jumping away.

Constipation can also be linked to a change in lifestyle, e.g., if you have been a lot less active in the last year, it could have caused your gut transit time to slow.

But whatever it is its good that its getting better!


----------



## deegirl

This one will be short as need to make the dinner!!  Prawn stir fry with brown rice I think!!  

Agate - thanks for the further explanation.  I'll do my research.  Hope you've had another relaxing day in bed, I'm sure the time flies with us keeping you busy!!  

Ells - glad to know I'm not the only one!!!  I just think it's best to do all the stressing about these things now rather than when we get pregant!!  

Laters....
Dee x


----------



## agate

ells said:


> I think the positive thinking is great, I feel a mantra coming on - this one will work, has worked and will not fail!  .


grow, grow, grow little follies grow.... 
then later
grow, grow, grow, little embies grow...
then later
grow, grow, grow, little baby grow....

yes, it does get a bit repetitive.


----------



## Cath34

Agate, I hope you are resting well? I found your comments interesting about LIT and RH neg. I have found out I am RH neg (only knew this during routine preg bloods) and my DH is O Positive. I went to Greece for Donor LIT x2 before my treatment but didnt have the Anti D injection as I didn't know my blood group at that time. My LAD went up very high which was good but do you think I am at risk of developing the antibodies now as I wasnt protected with the injection before my LIT? Am i making sense?


----------



## agate

Cath - as far as I understand it, the risk of Rh sensitisation during LIT is supposed to be very small - because the red cells are washed out.  If you look at the instructions for the anti D shot for bleeding during pg, it says that its needed if you have a transplacental bleed of more than 4mls of fetal red cells.  That sounds like an awful lot of red cells compared to the virtually undetectable amount that could/would be in the LIT shot (after the white cells are washed), and as it was donor LIT, for all we know Dr T might use/have used Rh neg donors - in which case there would be zero risk.  So my GUESS is that you don't have anything to worry about - otherwise Dr T would make more effort to ask about Rh status before LIT - but I don't know for sure and I guess you would need to ask Dr T for a definite answer?  My GUESS is he would confirm there was no/negligible risk and you have no reason to worry. Obviously, the UK NHS will give you an anti D shot every time you have a significant bleed during pg, and would give it to you when you baby is born.  Dr A does insist on checking Rh status before LIT but then he does put most of the LIT into the vein, and I assume that would give a slightly higher risk than subdermal.


----------



## berry55

what is RH neg?


----------



## Pinpin

Cath & Dippygirl - Re-risk with LIT if you are Rh o negative I had the exact same question when I went to greece for my first LIT ( I am rh 0 negative and Dh is o positive). When I had my first LIT with Dr A and I received an anti D shot and therefore I was worried about it when I went to greece as Dr T had not asked at all about blood groups... therefore I grilled Dr T about it when I saw him! He assured me that there was no risk at all as the process they use in their lab in greece guarantees that NO red cells are left in the solution they inject you. When I mentioned that Dr A had given me an anti D shot he said it was because Dr A is probably not confident about his lab's method to guarantee a red cell free solution... He said he never had one single case of sensitisation. I hope that is reassuring for you girls 

Now what i do find odd is the fact that 3 of us on here are o negative and have dh o positive as it is very rare as far as I know... !

Agate - I 'm glad to read that you are taking it easy and that the bleeding has stopped. Dr G really will have sorted things out by giving you ivig as quickly as he did. Almost 14 weeks for you that is great! 

AFM - i'm anxiously waiting for the results of my retest of NK cells and   that those nasty CD56 have come done since i had ivig 12 days ago. I did the test yesterday so hopefully results should be back by thursday.

Love to all

Pinpin x


----------



## agate

thanks pinpin! 
although I feel anxious to get on and have another ivig asap. but dr g said to wait until after 10 day retest. 


Berry: when you have your blood group tested you will be A, O, AB etc but you will also be either Rhesus negative or Rhesus positive.  So you might be, say A+ or O-  

If you are Rh-, then if you are exposed to blood which is Rh+ (e.g., if your DH is Rh+ so you give birth to an Rh+ baby - and placental blood ends up mixing with your blood), you can be sensitised to Rh antigen so you make antibodies to Rh. This isn't a problem for your first pregnancy, but it can be very harmful to the next Rh+ baby you might have.  

If you are Rh+, or if your DH is Rh- there is no problem - but ladies who are Rh- and have an Rh+ DH have to be given a shot of Anti-D antibodies (rhogam) when they give birth.

If you are Rh- (and the father is Rh+) the shot is also needed if you have a heavy bleed in mid-late pg because blood from the placenta might contain fetal Rh+ blood.  I don't THINK the same risk applies in early pregnancy because the volume of fetal blood is small.


----------



## fi7

Hi all

what a busy thread and so much great info.  thanks to you all.  forgive the lack of personals, but bed for me soon after a day at work.

You can add another rh -ve to the group - me,  how strange there are so many negatives!

Berry - when i had my immunes with Dr G , i had to go mon - weds before 1pm as they have to send them to the US and they need to arrive before the weekend.  not sure which test you are having though but worth checking with Akville.

also someone asked about clexane and the fact that the info in the box says you should have weekly tests.  all i can tell you is that i was on it for most of my pregnancy and never had a check, so i think it is fine.  they just took me off it a week or two before i was due incase of csaerian which i did indeed have.

big hugs to all.  Agate rest up and thanks for being so helpful

fi


----------



## Louiseb26

Agate - I'm so glad your resting up and the bleeding has stopped lovely  

You are such a star with all the information and advise you give to everyone.Your going through such a tuff time yourself,and your always there to answer any questions.Sending you loads of    

Lou xx


----------



## DippyGirl

Agate and PinPin - thanks million for the info on the Rh factor.



Pinpin said:


> Now what i do find odd is the fact that 3 of us on here are o negative and have dh o positive as it is very rare as far as I know... !


I thought that Rh neg was rare 1 in 10 but checking Wiki seems about 16% of the UK/Irish (me) population have Rh negative (A-, B-, AB-, O-), this would be 1.6 for every 10 of us... I wonder 

http://en.wikipedia.org/wiki/Blood_type

D x

This post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## berry55

Agate- i have no idea what blood tpe dh and i are... is that a problem? should i know this b4 i have LIT? xx


----------



## agate

Berry: as per Pinpin's post - if you have lit with Dr T it shouldn't be necessary, but if you have lit with someone else, they might insist you get your and DH's blood group checked beforehand.  When you do get pg and see your mw, she will definitely test you though as part of the normal procedures.


----------



## Ourturn

Agate - hope you're feeling ok? Seriously think you should train as an immunology doc! 

Hi everyone
Dr G has faxed prescription for IVIG and Intralipids to [email protected] to get booked in for Monday and next Friday. (I'm on day 2 of stimms today) Thing is [email protected] have said he has not included any premeds and are calling him. Any idea what premeds I would need?

Thanks 

Anna x


----------



## agate

premeds?  for ivig and intralipid?

never needed anything for ivig (although nurse is supposed to have adrenaline on standby for both IL and ivig in case of anaphalyxis)

never needed anything for IL either (although of course you need a bag of saline to dilute the IL into)

some docs give antihistamine eg piriton before the ivig/intralipid but I've never been given it.  

my prescriptions for [email protected] have never included any premeds - and [email protected] have never queried it (although of course I'd had them before at Dr Gs before having them from [email protected]).  Are you dealing with Jade Herrington at [email protected] in fertility dept?


----------



## Ourturn

Hi 
Yes I think its Jade. They asked me if I had had IVIG/Intralipids before, I said no. Maybe that's why?
x


----------



## agate

that's probably why then - they are maybe thinking of you having some antihistamine - doesn't sound like its going to be difficult to sort out either way.


----------



## Cath34

Thanks a million Agate and Pinpin for your info on Rh - I feel more relaxed about it now.

Agate- I'm glad you are resting and that the bleeding stopped. Choice had the very same thing and Dr G gave her IVIG quite alot and she and baby are doing fine. 

I am having my nks re tested all of the time and I had IL with [email protected] nearly 3 weeks ago and retested 10 days later and my 50:1 was 10 from 22 which is good for me but my CD 19 & 5+ had gone from 1 to 32!!!!! Obviously IL didn't do anything for these this time but it usually does? I'm not sure I'm convinced by these tests you know, anyone else feel the same? Anyway Dr G wants me to have IVIG asap next week. I'm confused  

How is everyone?
Sarah, how are you hun? I'm thinking of you alot.


----------



## Newday

Cath can I ask how much and how long you took the doxycycline for? Also when did you start clexane?
This pregnancy must be costing you a fortune 
Dawn


----------



## agate

Cath - everytime I get retested the results are different - but we have to expect some of this because the whole function of the immune system is to react to stress and threat of infection - so I don't think we should panic if one test (a snapshot of an instant in time) shows a high result - although in pg, everything is supposed to get downregulated to help you carry the baby (although making you more vulnerable to bugs) - personally though, if Dr G said I needed more ivig, I'd be biting his hand off to get it -but that's just me and my panicky mindset.  I do know that although IL and IVIG both reduce NK activity, they can't work in the same way on all aspects of the immune system because one is a wash of (healthy) fat and the other is wash of zillions of human antibodies.  Not sure this is any help to you, but I think I'd go with the IVIG if possible.


----------



## Cozy

Sobroody,

when I have had IVIg with HCAH they have given me high dose intravenous Piriton about 15 mins prior to the IVIg then afterwards they give you some Piriton tablets to take later that day and again the following morning.

With Intralipids there is nothing aditional, other than saline to wash it through the drip.

I have never heard of "premeds" being mentioned before. Maybe its just the Piriton?

I'm sure they will come with all the right stuff. I've had 4 visits so far and they have all been very nice.

Cozy


----------



## Ourturn

Cozy - I chased and asked if my premeds they meant piriton and an epipen as I carry both due to food allergies. She said she would call me back....still waiting! How long do the IL and IVIG drips take?

Agate - our guru...I am worried about taking piriton with ivig..won't this interact with the lit I had? My ivig will be a week on Friday and that will be 2 weeks 3 days since my second dose of LIT. What do you think?

Thanks 

Anna x


----------



## Cozy

Sobroody,

IVIg takes the longest, It takes about 4 hrs with me and Lipids are about 3. It also depends on how much talking you do before they set everything up  

The Piriton wont effect your LIT now.

Cozy


----------



## Ourturn

Thanks Cozy


----------



## thumbelina

Hi ladies  

Wow u can all talk  

Berry55 - I hope so too hun. Yes it is really confusing.. My mind is spinning with it all. How are you today after the humira hun      

Agate - I hope everything is good with you now hun and you are relaxing well      

Cozy - I thought that the ivig and intralipids were done at Dr Gs. I thought you paid him and he supplied the drips. Im really not too hot on what happens. Where does it all happen. Wow 3 hours is a long time. Hope ur well hun and congratulations on ur pregnancy xxx

Cath - It does sound as though you are paying a fortune.. Congratulations on your pregnancy xxx

A big hello to all I have missed.

   and     to all.

Love Thumbelina xxx


----------



## sarahh

Anna - its ok to have steroids / antihistamine over 2 weeks after the LIT.  Don't worry.  

Thanks for your comments everyone.  I went to the TB consultant yesterday and he said IVF or no IVF he would strongly recommend treating with antibiotics to reduce the risk of the latent infection becoming active at some point in the future.  Thing is though that even after taking them I will have the latent infection for life.  Taking the antibiotics halves the likelihood of the infection flaring up in the future.  I had a choice of taking 1 anti-b for 6 months or 2 combined for 3 months so I've chosen the shorter option so I can get on with tx (please god don't throw anything else in my way after this  ) after I finish.  

Agate - sorry to hear about your bleed - scary isn't it - I had one at 16w with DD and I was so scared.  Sends you in to complete panic.  Glad you heeding the advice and remaining on bed rest tho.  

Ells - glad the Humira does seem to be doing something for you.  


Sorry girls, got to run, just about to eat (late) tea. 

Sarah x


----------



## peg2

h i there
just had our results from mr.gorgy
we did a telephone call
from wot i understand i had borderline cases in 3 things 

lad i was 45.0 and he likes it to be 50-70 or 80 ( either go to athens for some injections 4-6 weeks before tx or have it done here but waiting list is up untill august)

THI:TH2 i was 30.5 should be 30.6  treated with intralipid during treatment

nk assay i was 15.2  he said not too bad but would get better with predistone clexane and intralipid during tx

a bit of me is relieved that they found something that can be treated but another bit of me is so upset as we are going to have to wait till august, we were suposed to be staring in end of feb, don't know whether i am going to make the wait. so stressfull . i'm 39 in july . time is not on our side.

i really thought that they wouldn't find anything as i am so healthy and have been eating all the foods suggested in the dr. beers book body baby friendly, have been for over 3months now.

dh  has been really supporting tho saying we need to do it all prperlry and mr.gorgy knows wot he's doing. and don't worry about the money. i really thought we were about to start and now i've got to wait another 6 months AGGGHHHHH  so frustarating

gosh sory to come on here and moan

hope all of you are ok
will do more personals soon xxxxx
thanx all for listening 
xxx
peg


----------



## Cath34

Newday- From what I can remember (as my baby brain has made me completely forgetful) I took 100mg of doxycycline twice a day for a week leading up to ET. Finished day before I think.

Agate, I agree with what youre saying. I firmly believe that IVIG works much better for me than IL even though the test showed the other way around when I had the both tested!!!! well actually one test shoed ivig was bette then anotheR showed IL, but I believe in ivig. I am going with whatever Dr G suggests but I have an appointment with haematologist in nhs and I'm trying to get ivig on NHS!!!!! Wish me luck girls!!!!


----------



## DippyGirl

peg2 I also recently had the results from Dr G I can appreciate might be frustrated with a delay BUT that wasn't my understanding of the LIT situation... Dr G is apparently about to open his own LIT clinic in London (he mentioned April ?) and the Athens possibility isn't as bizarre an option as it first seems indeed I get the impression it might be preferrable.

Sure some of the ladies posting here WILL EXPLAIN better but also maybe check the LIT thread under the immunology. D x


----------



## agate

peg2 said:


> h i there
> just had our results from mr.gorgy
> we did a telephone call
> from wot i understand i had borderline cases in 3 things
> 
> lad i was 45.0 and he likes it to be 50-70 or 80 ( either go to athens for some injections 4-6 weeks before tx or have it done here but waiting list is up untill august)
> 
> THI:TH2 i was 30.5 should be 30.6 treated with intralipid during treatment
> 
> nk assay i was 15.2 he said not too bad but would get better with predistone clexane and intralipid during tx
> 
> a bit of me is relieved that they found something that can be treated but another bit of me is so upset as we are going to have to wait till august, we were suposed to be staring in end of feb, don't know whether i am going to make the wait. so stressfull . i'm 39 in july . time is not on our side.
> 
> i really thought that they wouldn't find anything as i am so healthy and have been eating all the foods suggested in the dr. beers book body baby friendly, have been for over 3months now.
> 
> dh has been really supporting tho saying we need to do it all prperlry and mr.gorgy knows wot he's doing. and don't worry about the money. i really thought we were about to start and now i've got to wait another 6 months AGGGHHHHH  so frustarating
> 
> gosh sory to come on here and moan
> 
> hope all of you are ok
> will do more personals soon xxxxx
> thanx all for listening
> xxx
> peg


Peg - most ladies do go to athens for LIT (to rectify low LAD) rather than having it with Dr A in London - there is a v long thread about it in the investigations and immunology section and you can see who is going to athens and when. Your LAD is really not that bad though compared to most ladies who have LIT. So, personally, I would either go to athens asap so you can get on with your Tx having had the LIT, or skip the LIT and get on with your Tx (and maybe go to athens if you get your BFP). Its only my opinion, but I think there is no point at all waiting until August to have LIT with Dr A as the LIT given in athens seems to work a lot better and you wouldn't have to wait very long at all to get your appointments in athens. The LIT given in London costs a lot more, so in the end, even with the extra travel costs it doesn't work out that much more to get it done properly in athens. I don't think I'm the only lady on here who thinks that LIT with Dr A in London is a waste of time and money. Dr G is supposed to be setting up his own clinic (after getting training from Dr T who runs the athens clinic) but its not certain when he will be able to set this up - although it might be as early as march.

Most of your results are very good and you should rightly be relieved - and bear in mind that you can't change LAD results by diet - LAD is a measure of how many antibodies you have in your blood to cells with your DH's DQa marker - no diet could change that. The only thing that could would be a successful pregnancy or LIT. So maybe the fact that your NK and cytokine results are pretty good reflects the diet you have been on?

Wanabemum: someone is trying to pm you but your mailbox is full.

Cath: maybe IL works better in a test tube to suppress your NK activity but IVIG works better on balancing your immune system overall?

good luck getting the ivig on the nhs! there was a bit about ivig on bbc news yesterday as a new Tx for arthritis.

Thumbelina: most ladies do have their drips at Dr G's in the drip room behind reception (and he prefers everyone to have their first drips there just in case you get an allergic reaction), but if you live a long way from Dr G's or are too poorly to travel he can give you a prescription for a national nursing agency ([email protected]) to come to your house and give you the drip. In that case, you pay Dr G for the consult (if needed) but pay [email protected] for the cost of the drip and the nurse's time.


----------



## ells

Good luck for the IVIg Cath,I really hope that you get a successful result! 

Agate, how are you feeling hunni?  Hope you are still resting up in bed!

Sarah, the antibiotics sound like they will help.  What are your thoughts on having humira once you had the ab's?

Peg, a lot of the ladies go to Athens for LIT as it's quicker and better.  I am sure one of them will be a long in a bit to advise you.  It sounds good on the other bits of your immune tx, it seems you dont need too much of an aggressive tx plan.  Good luck.

Cozy, how are you feeling?  Have you had many pg symptoms?

Sobroody, did you manage to get a phone call back and get everything sorted out for your IVIg?

Berry how are you feeling?  Hope that you havent had any probs following your humira injection.

How is everyone else?

Quick question, my drug 'trunk' arrived today,and I have sorted everything out.  I have never had to take provera before but I have to take it from day 19 but do I take this in the morning or at night?  

Hope everyone has a good night.

Ells


----------



## agate

Ells: been feeling pretty yuk again today (spinny head and stomach - it was a waste of time getting out of bed to cook supper because I only threw it all up again - again) - can't decide whether its just pg nausea or whether its withdrawal from the prednisolone - taking it down gradually but still some way to go yet.  At least I found LO's HB quickly last night which was a relief. 

provera is just progestin (synthetic progesterone analogue) and is only there to make sure you get your AF on time when you stop it (and to maybe reduce the chance of an ovarian cyst) - so it really shouldn't matter whether am or pm.  I'd go with whichever is easiest to remember - but my memory is rubbish.


----------



## Ourturn

Ells - no   Chased H @ H first thing and still waiting for a call back   Feeling pretty stressed as I need the intralipids Monday afternoon. Going to London is not an option as I have scan and blood tests in the morning so wouldn't get there in time!

Anna


----------



## wanabemum

Hi all

agate- thanks for letting me know mailbox is full, you kindly helped me out a while ago and am delighted to see you here and your vast knowledge is amazing. Congrats on your BFP, hope you are ok.

I hope you dont mind me joining in here, going to see Dr G in next few weeks, have already had some immune tests done and my Th1:Th2 was 41, reduced to 33.8 after 2 injections and then after 2 more to 32.2. Just had a failed cycle with no embryos to transfer and having a review next week and I think they will be suggesting DE to us.

My question is would Dr G do more than 4 injections of humira and could the use of humira improve my egg quality? 

Good luck to you all 
X


----------



## ells

Thanks Agate, I hope you feel a little better today.  How quickly are you coming off the pred?  I was told by my GP that if I was feeling ill when weaning off to take it down by 1 5mg tablet each week, aparently that then helps your body adjust better and your natural steriods can then take over.  I  imagine that its made worse by the pg nausea too - but thats supposed to be a good thing so I hear!   I hope that you manage to be able to get up with out feeling so yucky today   .  I think I will take the provera in the morning along with all my other tablets - seriously you can hear me coming before I arrive   I must really rattle! I think they have given it to me to ensure that I start AF starts - might be linked to the blocked tube that Dr G said he thought I had   .

Wanabemum, I know Dr G has given ladies more then 4 humira jabs before - I think his max has been 6 although I am not 100% but I know I was reading someones diary last year and they had 6 shots. Did the IVIg help bring down your TNFa's more?  I know when I have spoken to my consultant about the humira (for my crohns) he has told me that it can take between 2 -6 weeks before you start seeing a benefit and changes.  Are you thinking about getting your levels rechecked? Good luck for your next appointment.  

Sobrody, how frustrating   .  I really hope you have a good moan when you speak to them.  I dont think they realise the extra stress that this sort of problem can cause.  If it helps I know of a lady who phoned the 2 days before she needed the IL and got it sorted out.  I hope that you get a call today and give them what for!   

Hope everyone else is okay, busy day with recruitment today - ehughhhh.   .

Ells


----------



## Saffa77

Hi Broody

Try not to worry if it helps I called H @H  Tuesday late PM for Intralipids for today and they said not a problem and nurse is coming around today.

Sx


----------



## Saffa77

Ladies 

Another question I am on 40mg Clexane and believe it or not have not bruised at all really and dont get any stingy burning pain which I had heard is so bad and also on prednisolne 25mg and have no apetite at all??  Is this normal?  I heard the steroids increase appetite but that hasnt happened whiwch I guess is a good think so am thinking maybe its the clexane?  anyone else felt this?

Sx


----------



## niccad

Saffa - I found the bruising very hit and miss. First tx I bruised loads, whereas this latest one I didn't and I began to feel really confident about it... and then of course I got 2 massive bruises!! I don't find it stings so much either... I find that if you pull the needle out and no blob of blood follows straight away then you won't get a bruise, whereas if you pull it out and a big blob follows straight away then it's best to put a compression bandage thing on as it's likely to be a nasty one! My appetite didn't change this time, but I still had an appetite. Might be that you are just worried and this is effecting your appetite??
Nic x


----------



## berry55

Hi girls,

I'm having a bit of a down day today  The reason i'm feeling so rubbish is that i keep thinking that the humira injections r not gonna do  much for me as my level was 56.7 to start..... what do u all think? I'm i getting upset for nothing? 

Berry xxx


----------



## Saffa77

Hi all

Berry hope you feeling a little better i think just give it a try a nd see what happens at least you know you treating something as in the past you never knew what was wrong.

I just had my intralipid with [email protected] and my arm is frozen!!! anyways I have heard Intralipids is usually done 7-10 days before ET what happens though if Donor EC is a day before schedule and I will have my ET on  Wednesday meaning I would only of had intralipids for 6 days before ET does that make a difference? Im worried now....

hi to everyone else.

Sx


----------



## Pinpin

Hi Girls

Just a quickie for Berry - I just hoping to give you some PMA back by telling you my experience with Humira was positive! My TNFa were at 51.6 and Dr G said in all likeliness I would need 4 jabs of humira to get below the 30 limit. After 2 jabs he got me to retest and my levels had come down to 27! Dr G then told me to do 1 more shot as there were still 4 weeks until the start of my treatment so he wanted to be sure my levels would remain below 30 so I did and kept the 4th one in the fridge just in case I need it one day...
I hope this is giving you some hope that it will work for you too  

AFM - Dr G called me with my results of NK retest today and my CD56 have not really come down since I had IVIG 12 days ago (at last retest they were 21.6 and this time they are 20  ) so he's asked me to come in for either IL or IVIG on saturday am, we'll discuss which to have then but I gather ivig is best at tackling CD56 therefore expect to get another of those. I'm scared to do any research about what high CD56 could mean for the pregnancy... Agate do you know anything about this? Do you have any advice?

Take care girls
Pinpin x


----------



## berry55

pinpin- ohh thanks for ur story! That has givin me a bit of PMA  xxxx


----------



## agate

Saffa:  7-14 days before ET is ideal but there is not much difference between 7 days and 6.  In any case, you can't do anything about this now.  The best thing is to try and relax and stay calm to keep your NKs and TNFa down.  Try to spend as much of the intervening time doing whatever things relax you and leave off worrying about things you cannot change.

Pinpin: as far as I remember, CD56 is a just a measure of how many NK cells you have in your peripheral blood.  It isn't as meaningful as your NK activity.  Just because you have a higher than ideal number of NKs it doesn't mean they are going to be switched on and cause you a problem.  I think you should get the IVIG/IL and try and relax as much as possible so those NKs stay quiet and switched off.  Dr B seemed to suggest that you would have 4 weeks grace time to deal with an NK issue before there was any effect on the baby's growth.  From the little I can find, IVIG does reduce the number of NK cells (so it should reduce your CD56 number), but I am not sure whether intralipid reduces NK number or just NK activity.


----------



## Saffa77

Thanks agate also I am having a bit of a bleed at my this mornings clexane site not gushing out but a bit of blood this is only my third clexane should I stress?

Sorry for all the questions!

Sx


----------



## agate

Saffa - sometimes you will bleed with clexane and sometimes you won't. sometimes it will sting and other times it won't.  it just depends which bit of skin you pick - whether you are closer to a nerve or a blood vessel.  no need to worry. just hold a clean cotton make up pad/cotton wool ball on the spot until bleeding stops.  it should stop after a a few mins at the max.

the bleeding you have to worry about is not from the injection site because that is 'explainable'- you just need to look out for 'unexplained' bruises or bleeding (e.g,. multiple nosebleeds or bruising where you haven't needle stuck or banged into something) - that would suggest you need to be checked out


----------



## Pinpin

Berry - i'm glad to have given you some PMA back   you go with your humira shots girls and those TNFa will come down nicely.

Agate - thanks for the info - since my previous retest before this one was about 3 weeks ago it sounds like my period of grace will be coming to an end in about a week's time so whatever i get on saturday il or ivig needs to work!

How are you doing Agate?

Hi to everyone else  

Pinpin x


----------



## Saffa77

Ladies

Agate - PHEW ok thank you for the info re clexane.  Was getting worried there.  Am feeling so worried this time round dont know why I need to relax!!!! doing my head in!


----------



## berry55

pinpin- once u have the green light to start tx (that ur TNFa has came down) and if u do get preg (like u did) do u need to keep having a retest on the TNFa xxx


----------



## Pinpin

Hi Berry

No you don't have to retest the TNFa when you get your BFP you will only be retesting NK cells as anyway you would not be able to take humira whilst pg so the idea is to bring the TNFa down before the cycle as once they are down i understand they stay down for some time.

Pinpin x


----------



## wanabemum

ells- thanks for that info on the humira. I didnt get my levels checked since the IVIG. Have appt with Dr G 1st march and was thinking if he will do the full bloods again should I just wait for then rather than getting them done again now?

pinpin- hi, nice to see you here, think I met you on investigations and immunology board before. 

Hi to everyone else


----------



## Cath34

Hi girls, does anyone know how high levels of CD 19 & 5+ affects pregnancy. It always seems to be this one that flares up high
from 1 to 32!! I'm not sure what these individual ones indicate. All comments welcome, thankyou.


----------



## Saffa77

Hi Cath

Isnt CD 19 and 5 when your body creates antibodies to hormone drugs?  Like progesterone - can they not just up your Gestone dose up?  will that not bring it down?  Sorry not quite sure on this one.

Sx


----------



## agate

CD19+5+ are a class of B cells (antibody producing cells) which are associated with autoimmune antibodies and anti-hormonal antibodies.  This might include anti progesterone, anti thyroid, anti ovarian, or anti estrogen antibodies but its not possible to know what these cells are doing in an individual case (except maybe by testing the levels of of these hormones/antibodies in the blood).

Saffa: giving progesterone won't lower CD19+5+ cells -but if a high level of those cells is causing a reduction in progesterone levels, then increasing progesterone could protect/allow a pregnancy that wouldn't do well with the low progesterone level.

Cath: basically the rise might not be important at all because the cells might be non-active- but I guess if Dr G is concerned he might test your hormone levels - but even then, Dr B seemed to think that once you got past week 16 even someone with autoimmune problems would have enough placental progesterone to be ok.  Presumably he will want to give you IVIG (IL?) to try and balance things as much as possible.

PinPin: don't panic, Dr B only said it took 4 weeks for the baby to 'feel' ANY impact - its likely to be something very gradual even after the 4 week point - and if your baby has been growing well up to now, everything bodes well.


----------



## wanabemum

Hi all

Another question- has anyone any advice on what airport is best to fly into from Dublin- probably a stupid question but never been to London! Also any recommendations for hotels near Dr Gorgy?

thanks


----------



## ells

Hi Wannabemum, if it were me I would wait to do your retest with Dr G - I am sure he will want to get it done anyway so it may save you some pennies.  Cant really help with the hotels but I think London City Airport might be worth a shot, if not Heathrow   .  I am sure that someone will be able to give you more/better info soon.  

Berry, def keep up with the humira, i get my levels retested Tuesday, I think mine were 39 and I have had 4 jabs, I will let you know my results although I am pretty sure its helping my problems as I am feeling better and my normal problems are easing a lot.  Big   to you as I know this is hard but keep going hun.

Pinpin, I hope that you get good results when you have your retests done and that this next dose of IVIg/IL makes the difference.  How are you feeling? 

Agate, how are you feeling today hunni?  I hope that things are gradually improving?  

Cath, I hope you get some answers about it.  It will be interesting to see what Dr G says about your levels (my 18+ and 5+ are also high) .  Hope you are feeling well.  Have you heard from Omni and how she is getting on?

Sobroody, any luck with [email protected]?

How is everyone else?  

Ells


----------



## Ourturn

Ells - yes all sorted with [email protected]'m not handling stress as well as I normally do thanks to the stimms and added immune tx. IL and IVIG drugs arrived today. Nurse is comming to sort IL Monday pm, 2nd nurse Friday for IVIG. 


Hi everyone

I'm fighting a cold and sore throat..pretty sure I have a sinus infection. Start 25mg of pred tomorrow..will this be a problem? Getting lots of sleep, making fresh juice and trying to eat as well as possible. Anything else I can do?

thanks 

Anna x


----------



## ells

Hi Sobroody, glad you got everything sorted with [email protected] hun.  Hopefully your stress levels will drop now that you have everything in place sweetie.  On the cold, keep up your vit c and try some echinaecha (sp  ) but it shouldnt effect you taking the steriods hun.

Hope everyone else is okay this evening.  Thank goodness its Friday  

Ells


----------



## ratsy

Hi wannabemum

Im booked into a hotel 5mins from DR G office its the holiday inn oxford circus and its £120 for the nite double room 

Hope this helps ive got the nimber if you want to pm me 

Ratsy x


----------



## agate

Sobroody:  that is unlucky.  I would be cautious about taking echinacea (or even extra zinc) at this point.  I THINK that echinacea helps deal with colds by increasing NK activity which you don't want right now, as does high dose zinc -that is how they help get rid of colds.  The effect of echinacea on fertility generally has also not been established.  Taking extra vitamin C is probably safe (as the excess will be excreted safely).  Eating lots of fruit and veg and trying to get as much rest and relaxation seems the safest option at this point - but its only my GUESS.  At least its now and not next week though!  I think if it was me I'd skip paracetamol etc unless you really need it (in the hope that if you have a bit of temperature it will help burn out the cold more quickly) - you can try hot packs/cold packs/steam from a bowl of water to relieve sinus ache without pills -  but this is just a hunch and I don't have anything to back it up with.


----------



## peg2

this thread is amazing! thanx so much for all yr msgs!
agate thanx so much for all yr info, it is really encouraging!i was feeling a bit desperate thinking that we'd have to wait all that time. i'm glad i wrote down my results as i thought they seemed quite low. and was wondering whether the tx was nessesary at all.
Dh read yr msg and that has really helped as he now realizes that alot of us are in the same boat and all you guys are really helpfull! you are really articulate! He has asked me to investigate about athens!( last year he was very cynical about it all so this is a gr8 turning point!!
ells thanx hun as u can see i got loads of info from agate! hope you ok!
dippy girl thanx hun i'll check the lit thread too1 hope you ok too!

can i ask another question?or 4!
wot is the protocol in athens?
how long is tx?
do they spk english
any other info?

hi thumberlina hpe u ok hun

thanx peg xxx


----------



## agate

peg2 said:


> wot is the protocol in athens?
> how long is tx?
> do they spk english
> any other info?


There is loads of info about LIT and athens on the LIT thread (in investigations and immunology. 
The protocol is basically
1) get your DQa and LAD results to Dr T in athens and decide whether you are going to have donor or paternal LIT (blood from your DH or blood from a paid donor) and get your appt booked (clinics are roughly every 2 weeks on a tuesday in the centre of athens at a private clinic).
2) assuming its paternal, your DH needs to have screening blood tests done in the UK to make sure he doesn't have any infections that would harm you
3) you get to the clinic by about 2.30pm on LIT day (your DH needs to be well fed and hydrated - assuming he is giving blood)
4) you wait for your DH to be called in to give his blood
5) you wait for your DH's blood to be washed to leave only the white cells
6) you have 12 tiny 'bee sting' injections on your inner arm of the white cells and your arm is dressed with a sticky bandage
7) you go home sometime between 5pm and 8pm (if you are pushed for time you need to explain that so you get seen sooner)
 you go back and do it again 4 weeks later.
9) you either wait 3 weeks and retest your LAD before your Tx or you start your Tx and retest if you get pg (if your LAD is still a problem, you can do another dose of LIT again asap).

the clinic staff don't speak much english but the doctor in charge, Dr T does and the waiting room is full of international ladies as well as greek ladies so there will always be someone who can translate for you if needed.

almost any question you can think of will have been answered previously on the LIT thread. Its probably the best place to ask LIT related questions.


----------



## ells

Sobroody & Agate, i didnt even think if that effect from echinacea   !  I hope that you will feel better in the next couple of days though Sobroody   .  Dr G told me to have as much Vit C to try and knock a cold on the head when I saw him in September but from natural sources (I forgot to add that bit sorry!) like fruit etc.

Peg you will get lots of good advice and lots of support on this thread.

Hope everyone is having a good evening.

Ells


----------



## Bunny-kins

Hi Wannabemum,

Best airport is probably Heathrow as you can get the tube into central London, however if you are looking at Ryanair (for the cheap flights) then look at flights to Gatwick as Luton and Stanstead are too far away.  You can get the train from Gatwick into central London and they run every 5 minutes well into the night too!  

Hope this helps hun!  

Bunny xxx


----------



## agate

wanabemum: forgot to say that Dr B's theory was that humira would improve egg quality in ladies whose eggs were damaged by too much TNFa (although other Drs eg Dr Sher do not agree).  Dr B did say it could take some time to churn through the follicles after the humira to get to eggs which are not TNFa compromised.  according to his records, maximum benefit on egg quality was around 6 months after starting immune Tx to get to eggs which were undamaged by TNFa, but this idea is not proven.


----------



## wanabemum

Thank you all for the very helpful info on airports and hotels,  you have all been very welcoming and kind. Will look at them all over the weekend and get booking! 

Ells- thanks, will wait for the appt with Dr G to get the levels rechecked , every penny i can save at the moment counts. 

Thanks agate for the info on humira, will be interested to see if G recommends I go on humira again.

Have a great weekend


----------



## peg2

thank you thank you thank you  agate you are sooo heplful!!!!!

xxxxxxxxx
peg


----------



## Ourturn

Thanks Agate - was tempted by paracetamol but will leave it alone 

x


----------



## MissyMinx

Hi Ladies, 

I haven't been online for a few days, but I just wanted to pop in and say hello and   to all.

Agate - I really hope those feet are firmly up and you and your little beanie are relaxing - you must've had such a fright when you had the bleed.  You truly are a star when it comes to all the immunes info.  Sending you  

Ells - sending you lots of   that your levels have lowered on Tuesday. 

Berry, how're you feeling now after the Humira?

Wanabemum, hope you have some success with the hotel booking, and hope you have good luck with your appointment with Dr G.

Sobroody, really hope that cold clears up - best of luck with the IL and IVIG.

Lovely to meet you Peg, look forward to chatting with you, and best of luck with your tx. x

Saffa, hope the Clexane's going ok.

Hello to Bunnykins, PinPin, Dippy Girl, Cath, Ratsy, Thumbelina and all the other F&G ladies.

AFM there's no news as yet.  I'm continuining with the health kick prior to our first LIT, and I have an appointment with the GP this week to go on Thyroxine and also to get some more Metformin.  DH is doing really well with his health kick too which is a bit help.  When we finally have our tx, he won't have had so much as a drop of alcohol for more than 6 months.  For someone who used to enjoy 2-3 beers a night, that's a really big change and I'm so proud of him.  (Pathetic I know considering it's the least he can do - but I do appreciate his making an effort!).

Have a great weekend ladies.

Em.x


----------



## thumbelina

Hi ladies  

Agate - How u feeling? I hope all is well   

Ells -    that ur levels have lowered   

Berry - Hope ur okay hun    

Wannabemum - Good luck hun   

Sobroody - I hope you feel better soon. Good luck hun   

Peg2 - Are you getting your head round it all hun?   

Saffa - I hope everythings going well. Good luck   

Missyminx - Im glad ur health kick is going well and its great ur dh is doing it with you. I seem to be so hit and miss with it all. We havent had a drink for months and gave up smoking 3 months ago now but every time I get stressed or upset I just comfort eat junk. It has to stop and I am gonna attack my bike today.. lol    

A big hello to cozy, pinpin, Lou and everyone else I have missed.

   and     to all.

Love Thumbelina xxx


----------



## Peanuts

Hi girls

Not been on in a while as work has been hectic - will be even worse next week, so it might be another week before I get on again!  Having FF withdrawal!! 

Sobroody - sorry to hear about your cold, hope it clears up soon  

Berry - how you doing after your 2nd Humira?  Hope you're taking it easy and getting organised for your trip to DrG's.  

Agate - Hope that you've still got your feet up and taking things easy  

Wannanemum - Gatwick or Heathrow are the easiest airports to get into the centre from.  I stayed in the Marlyebone hotel (Doyle collection) on the next street from DrG's clinic, it was lovely and got a good deal for £90 BB for the two of us. Good luck with your appt  

Saffa - not long until ET now, hope you're doing ok    

Sarahh - how did you find out about the latent TB?  Ive had 2 TB tests come back Indeterminate so not allowed Humira, but DrG didn't' say anything about further TB testing - did you get this followed up by your GP?

Ells - good luck with your retests  

Need to get in tocuh with [email protected] for my first Intralipids at the end of March - or do you think it would be better to go to London for DrG to do my first one?  I know this sounds realy silly, but will [email protected] or DrG put magic cream (anaesthetic cream) on my arm before needle?  I'm such a needlephob! 

Big hugs to everyone else - will be thinking of you all this week and hopefully get on again at the weekend
Dxx


----------



## agate

Peanuts said:


> Need to get in tocuh with [email protected] for my first Intralipids at the end of March - or do you think it would be better to go to London for DrG to do my first one? I know this sounds realy silly, but will [email protected] or DrG put magic cream (anaesthetic cream) on my arm before needle? I'm such a needlephob!


They might not have any, but you could buy some emla cream yourself - you don't need a prescription for it anymore. I don't think its a fabulous habit to get into if you can avoid it - if you do get your BFP and have to continue with drips and shots, bloods for the MW, and NK retests I'm not sure you'd want to subject your growing baby to even tiny amounts of novocaine/lidocaine? I did think about this because I am also needlephobic but I decided against it in the end (I still throw up with needles sometimes). One little splodge of emla cream for your drip is probably no big deal but then when do you stop... especially if you need daily shots like gestone that you could be on for months?

Dr G definitely prefers you to have your first drip there just so he can see that everything is ok, but if you are a long way from London I'm sure he won't have a problem giving you a prescription to have it at home. He tends to run the IL drips through a lot quicker than [email protected] do, but otherwise its the same thing. You'll need to get the prescription from Dr G first before you can book in with [email protected] They need to receive it before they can book you in - but there normally isn't any problem getting booked in.


----------



## berry55

Hi girls,

I have just had a really upsetting experience. I know u will all think this is really silly but i got really upset about it and i'm worried that its going to effect my TNFa. Can any1 tell me if i'm totally worrying over nothing... and also can u give me ur opinions on the 'argument' i had as i'm a bit worried that i might have been in the wrong.... and i made such a big deal about it  

2 years ago (b4 i had ever had any ICSI or even knew that my dh and i had any 'problems') my SIL was clearing out some of her old baby things (she has 2 kids and she is not planning on having any more) and she asked me if i wanted to take some of the stuff. I said ok and i took a changing unit, a bath and some silly little things and thought that whenever i did get preg it would save us some £ and that would b that. As the years have went on i have obviously not had a baby and that stuff is still in my cupboards. Last year when i did get preg i started to look at some things on the internet as u do and i realised that the changer unti that i had taken from my SIL was too big for where i wanted to put it and i would need to either put it somewhere else or buy a smaller one. So when i lost the baby i just sort of put it all out my mind and left it even though i knew i wouldn’t b able to use it. So today i was cleaning out my cupboards and i remembered about the unit. And i was gonna chuck it out. When my DH said " you better phone and ask her that she doesn’t want it back, u cant just chuck it out." so i told him to phone his sister as i was a bit busy at the time. Anyway, she was so annoyed and said that it was "rude" that i was giving it back to her after she gave me it. I ended up going up 2 her house to give it bk 2nite as i didnt think i had did anything wrong and i wanted to clear the air a bit. So she was like "you shouldnt have accepted it in the 1st place if u didnt want it, its really rude" and i explained that i did actually want it but as 2 years have past i now feel a few things....
1) I have been trying for so long and want a baby so much & i know i prob will only have 1 baby and i wanna buy all new stuff as i wanna enjoy every second of it.
2) It doesn’t fit in the place where i wanted to put it and i dont wanna have to change where i wanna put it (that prob sounds really terrible) 
3) I have had it in my house for 2 whole years and it annoys me that i have a changing unti and no baby on the way or even in the picture.

So i said "if i knew back then what i know now i wouldn’t have accepted it and i'm sorry for taking it in the 1st place" She was just so nasty and rude and it got me into a state  (when i got home) and i am now worried that all the stress(if u can call it stress) will irritate my TNFa? What do think? 

Comments r much appreciated... even if u think i'm wrong  

Berry xxx


----------



## agate

Berry - don't worry.  its more the long term stressors that raise your TNFa rather than 1 off bad days.  Can you just put it down to your SIL being a bit of an ignorant c*w today and call it finished?  Its done now, isn't it.


----------



## deegirl

Awww Berry that's really insensitive of your sister in law.  Do people who've had no problem getting pregnant really not understand what it feels like and the hurt we go through on a daily basis?  You're not wrong and in fact you were very brave going over to explain.  I would problably have sulked!!  Hope you're ok now.  

Dee x


----------



## berry55

Thanks for the comments girls. I'm so so baffled about it cos i understood that she was giving it to me cos she obviously didnt need it and to basicaly get rid of it. she said she didnt want me to throw it out as when her daughter (who is 8 years old by the way) grows up and has a baby she will have these things to use.     i mean... the stuff is about 9 years old, its from mammas and pappas... not freakin versace!!!    So then i started to get annoyed and was thinking that if she gave this stuff to me and it got a ruined by me using it would she have expected me to buy a new 1 for her? then what would have been the point in me taking a 2nd hand thing in the 1st place.... its so so bloody annoying me now... the thought of it. This is the 1st sort of 'argument' i have had with my SIL in 7 years... i have always bitten my tounge to keep the peace, so thats why i got so upset too.  How dare she say that she is annoyed at the fact i had accepted this stuff 2 years ago and then given her it back (after everything i have had 2 face in those 2 years) she also turned round and said "your closer now to having a baby than u ever have, so why give it bk now?" FREAK!!!! lol sorry for the rant again! xxxx


----------



## ells

Berry    , I dont think you did anything wrong, its sounds like your SIL was using you to store her 'things' for her daughter.  I hope that things will settle down and you will be able to move on from this seen.  I am sure your TNFa's are fine hun.  Family can really be a pain in the   sometimes.  Sending you big   for a better day tomorrow.

Hope everyone else is okay?

Agate, hope you are resting up well.

Thank you for my well wishes for Tuesdays retest.  I really am shocked at how well I feel following the humira - I really cant believe it has helped my crohns so much   .  Having suffered with this for the last 16 or so years I wish I could have tried this years ago   .  Hope everyone has a lovely Sunday.

Ells


----------



## deegirl

Hi Ells - Delighted to hear that the humaria is helping your crohns so much.  Glad you are feeling well and all the best for Tuesday.  Hope you get a good result.  After almost 2 hours of retail therapy online, I'm off to bed!!  

Dee x


----------



## Diane72

Hello All  

Berry, I think your SIL is being completely insensitive and frankly after multiple early losses I don't think I could face having baby stuff in my house. She is the one that is being rude by not taking the time to think how it might affect someone who has gone through what you have. Inlaws can be a nightmare, do your best to just ignore what she has said (let your DH handle it if she says anything else) and put on an act for your partners sake but know inside she's just selfish, selfish, selfish. Seriously, its hard not to feel bitter towards these people that have children and have no idea the pain we go through, but at least we've got each other.

Agate, hope the bleeding has stopped and you are feeling OK.

Ells, glad you are feeling better.

Hugs to everyone else  

As for me, I'm easing back into the treatment mindset. After 5 miscarriages, this is our final try and we will try everything. Had my first LIT on Jan 26th and going back on Feb 23rd. Currently DH and I are on a week's worth of antibiotics. Just waiting for my TB result back and then if all OK I'll start Humira. I have a laparoscopy on 4th March with the NHS. Planning to start down regulation beginning April if all is well and will do CGH of the embryos to ensure they are chromosomally fine prior to transfer. In the meantime need to try lose a stone, target is at least half a stone by end of month (already on low carb diet for a couple of weeks so been plateuing a little  ). Right must go face that 5km run followed by a swim!

Diane x


----------



## ells

Dee - thanks hun   .  The retail therapy sounds good.  Did you manage to get your LIT sorted out?

Diane, hi hunni   .  Well done on the diet, I too have been watching what I eat and trying to keep my weight down.  I have been making lots of home made soups - at least I know whats in them and i can take them for my lunch. Enjoy the 5 k run, I could walk it dont think I could run it yet!!  I am planning on doing the race for life again this year, hopefully with a small bump!!  Glad you have a plan for your next tx, hope you get the results you need and can getting going with all the different elements.

Berry, hunni how are you feeling today?  

Agate, how are you doing?

Lalaby, hope you doing okay and you are starting to get a lovely bump now.  

Mags, how are you doing?

Sobroody, hows the cold?  I have woken up with one too   - I'm not surprised really what with DH having Man flu last week and the swine flu jab.  

Louise, hun, how are you are going?

MissMinx, hope you get your thyroxine sorted out.  

Peanuts, hope you get everything sorted out with [email protected], I am hopefully going to be sorting my bits out this week, I think I will go to Dr G for my first IL and IVIg and then ask him if I can do the others from home as it really will be a nightmare to sort out going to London to do everyone.

Cath and Pinpin, hope you are both well and that you LO's are growing well!

Hope everyone else is okay.  Have a good Sunday ladies!

I am starting to get nervous about starting this tx now dont know why but I think part of this is that fact that we have to go through soooooo many hurdles to get our dreams, I really dont want to feel like a pin cushion   .  I am also (unfortunately) too aware that it can all go wrong at any point too  .  I think thats the thing that scares me the most - going through all this and not having anything to transfer   .  Right enough of my worries   - just watching Gok's fashion fix, I wish I had him in my wardrobe   !!  Hope everyone has a lovely Sunday even though its looking a bit cloudy!

Ells


Ells


----------



## Ourturn

Ells - so glad the humira has made you feel better. Cold is still there..hope yours clears up.

Berry - I agree with everyone else, your SIL is a SELFISH, INSENSITIVE, HORRIBLE woman! Can't believe she would have wanted the stuff back for her daughter. What if her daughter doesn't have kids until her 30's it will all be ancient. Sounds like she was using you as free storage as opposed to giving you the stuff out of kindness. As for her reaction! 
Why don't you send her the empty arms link from FF. Might make her hang her head in shame...then again sounds like she's totally self obsessed               
Take deep breaths and don't let her upset you....she's not worth it.

Diane - V impressed your re your excercise re diet..my understanding is that a Low GL (Glycemic load) is best for immunes. Its great for balancing blood sugar and therefore is v good for hormones and immunes. Its great for weight loss but I am trying to follow it for immune benefits. Check out the Patrick Holdford books on amazon. Many immune ladies go gluten free too if they find they find gluten makes them bloat. 

Peanuts - re needles...I cope by looking away and going to a happy place! I find the thought of it is worse than the actual sting!

Agate - do you still have MS? Are you still on gestone/cyclogest? if so how long do you stay on those for? 

AFM - I have have a  non stop headache...don't think its the sinuses...do you think its the steroids or stimms? Fist stimm scan on Monday (day 7). preparing myself for a poor scan...don't usually have much at this stage.

Anna x


----------



## agate

sobroody1 said:


> Agate - do you still have MS? Are you still on gestone/cyclogest? if so how long do you stay on those for?
> 
> AFM - I have have a non stop headache...don't think its the sinuses...do you think its the steroids or stimms? Fist stimm scan on Monday (day 7). preparing myself for a poor scan...don't usually have much at this stage.


headache at this stage is probably still from DR as your estrogen is probably still pretty low (if you are slow grower) - drinking enough liquid? in my limited experience steroids make you feel horrible mainly when you stop them rather than when you start them

most ladies stay on gestone/cyclogest until 12 weeks but if there are problems you might be on them until at least around 16 weeks ish - I think the B clinic has everyone stay on them until 16 weeks

not quite as sick as before but still sick some of the time. nearly finished with the steroids though - 5 more days.

still spotting - want more ivig for reassurance as much as anything else.

good luck for scan, anna, but, as you know day 7 is really early, so if its a 'bad scan day' try not to let it get to you.


----------



## deegirl

Just a really quick one from me as taking Sunday School today at 3!    Got little chocolate heart sweets for them all  

Diane - great to see you back, you have been through so much.  I know how frustrating multiple miscarriages is as I've been through it myself.  I was interested to see that you are going to have a laparoscopy as I then thought maybe I should have one.  Just wondering what benefit a laparoscopy would be?  I had one in 2008 to have full excision of endometriosis and I asked Dr G if I should have another one to remove any minimal endo which may exist and he said that he didn't think that would make any difference.  However I was thinking of having an SIS procedure done and then if necessary a hysteroscopy (although I did have one about a year ago).  But I would like different views on the benefits of having a laparoscopy done because if it's gonna help then I'll have it!!  

Agate - hope the spotting stops soon hun.  I don't know much but I have heard that spotting throughout pregnancy is normal.

Ells - thanks for asking about LIT, I still haven't got it sorted, I could really cry I have tried and tried to contact Dr T but to no avail.  The lovely Louise and Mag are going to book me in on Tuesday...phew!  

More personals later.

Deex


----------



## Ourturn

Agate - hope the spotting stops soon, must be unnerving    I imagine you use the doppler for reassurance though? Glad MS is easing. You are probably right re DR. Drinking lots of water...it just won't shift. 

I usually drink lots of organic milk during stimms but have cut right back on the diary...having a cold diary makes me much more mucusey. Hope this does not effect follie growth...I never get that many as it it!


----------



## agate

anna: if you skip milk you need to up the rest of your protein - can you face eating eggs?  chicken otherwise.  you could use protein shakes but its hard to find brands that aren't full of artificial sweetners like sodium cyclamate - except maybe solgar brand.

yes I check the doppler every other day. its been a life saver, despite how negative the MWs are about it.


----------



## berry55

Thank you so so so soooooooo much girls for your kind words. You all made me feel like i was not insane!     where would i be without u all eh? I told my MIL today about what had happened and she told me striaght that my SIL is selfish and she said that i did nothing wrong, so it made me feel a lot better that i have my MIL (who is my SIL mother) on my side   xxxxx


Agate- i hope the spooting stops,it must b really making u feel on edge.  

Hi to everyone else, i will b on later for personals. Got a few things to do.


----------



## Ourturn

Agate - I am trying to eat lota of protein..chicken, cheese, eggs etc but its a struggle as I don't have much of an appetite (v unusal for me). Will try going back to my organic milk shakes tomorrow

Berry - glad you feel better

x


----------



## agate

sobroody1 said:


> Agate - I am trying to eat lota of protein..chicken, cheese, eggs etc but its a struggle as I don't have much of an appetite (v unusal for me). Will try going back to my organic milk shakes tomorrow


I was exactly the same - the protein shake stuff was really handy because it was fairly easy to chug it down without feeling too full - but supposedly eggs have the best quality protein for the job. good luck for your scan.


----------



## bluprimrose

hello fga ladies - how are you all?  it's been a while.

i just wondered if someone can pls pm me ali in shadwell's number/address/email address etc..

thanks so much.

  

bpxx


----------



## agate

Address:  Rigcharm Pharmacy
93 Watney Street
Shadwell
London
E1 2QE 
Telephone:  +44 (0)20 7790 9150


----------



## bluprimrose

thanks so much agate.

have you used them?  are they reputable?  drugs in date/stored properly etc.?

hope all good with you.

bpxx


----------



## agate

they were helpful and cheap for routine stuff like pred, clex, gest and cyclogest - everything always in stock, clean and in date and I expect it would be because they must have a very high throughput as they are popular with fertility Tx ladies because of their prices.  was convenient for DH to go there to get my drugs whilst I had ivig at Dr Gs (and much cheaper than the places on wigmore st near to Dr Gs) would expect that they would refrigerate the stuff that needs it like pregnyl and humira - but you could always double check with them.


----------



## bluprimrose

thank you agate


----------



## ells

Hope everyone is well and you all had good weekend.

Well this is the week we start tx again, cant believe its here already!  I had a bit of a shock today though   went for my follow up with my crohns doc only to be given yet another dose of humira   .  I really wasnt expecting that but he assured me it shouldnt affect my blood test tomorrow and I should just tell Dr G that I had another dose today.  I did panic a bit but I guess it helps lower the levels - so that makes 6 injections!  I hope my levels come back okay.  

Sobroody, hows your cold?  Mine is yuk - I think the Humira will make it worse as well   .  Hope the drips go well, I think I am right in thinking they are today ?

BP - I think alot of the Lister ladies use shadwell's.  Hope you get it all sorted out etc.

Agate, how are you feeling today, I hope that you are still taking it easy and resting up.  

Peanuts how are you doing hun?

Dee I hope that you are able to get your LIT sorted out soon, its realyl handy being able to get other lovely ladies to help with the bookings!

SarahH, hi hunni been thinking about you   .  Any more info on the humira?

Shellie hope you are doing okay hunni.

Louise, hope you are okay hun.

MissMinx, hope you managed to sort your drugs out.

Saffa, how are you?  Do you know when ET will be, it cant be long now.

Berry hope you are feeling better after you SIL incident.  Glad that your MIL can see what she's like!

Newday, how are you?

Lalaby, hope you are okay.  Have you had any more scans?

Diane, did you do your run?

Zeka, Niccard, Thumbeline, Mag's, Pinpin, Cath, Peg, Cozy and everyone else hope you are all well.

Ells


----------



## Saffa77

Hi Ells

Sorry to hear about another shot but like the doctor said it shouldnt affect your results.

Agate and everyone else sorry head all over the place - good luck and hope you are all taking it easy.... well trying to.

As for me DP had to go to IVI lisbon to do his bit and will get a call tomorrow to let us know how many embies we have      we have at least 2 good ones for ET which would be on Thursday - getting nervous now and know I wont sleep a wink tonight!  Clexane going ok for me now and so is prednisolne into the swing of things.  I didnt like it in the beginning but getting better.

Holding thumbs.

Sx


----------



## Cozy

HI Ells,

wow 6 lots of Humira, good job you dont have to pay for it. I hope it does the trick for you.

Good luck with your TX this week, I hope it all goes well and look forward to hearing some good news

Cozy


----------



## niccad

Agate – how are you holding up? It must be so tiring just being in bed with your feet up. Do you have lots of boxsets to watch? Thank you so much for all your advice on here.. you really are a life saver x

BP – when do you start?? 

Missyminx – so impressed with your health kick, and especially that DH hasn’t drunk for so long. My DH managed it for 3 months and then had a sample which was the worse ever so now it’s difficult to tell him to stop (although he has severely cut down)… 

Peanut – Given that you’re miles away in Edinburgh I’d go straight for [email protected] rather than travel all the way to London for the IV. The needle going in doesn’t hurt that much but it’s best to look away as watching just makes it hurt more than it really does. 

Berry – I can’t believe how awful your SIL has been. I think it’s amazing that you went round to discuss it with her and think she is being sooo selfish. Her feelings over a bit of furniture is NOTHING compared to what you’re going through. I would hate to have any baby things in my house as I have enough reminders without opening a cupboard and being hit with it even more.  You know that advert on TV about the guy who’s killed a boy driving and whereever he is he keeps seeing the boy on the ground…. I think infertility is like that. You’re plodding through your day and it keeps hitting you, just like him seeing the boy on the ground. We do not need any other reminders…. What a  . I’m so glad that MIL agrees with you…

Ells – good luck for the retest tomorrow. What a shock getting more humira, but the fact that you’re feeling so good means it must be working a treat. When do you actually start treatment this week and what protocol will you be on? xx 

Diane – so lovely to see you on here again. I wanted to ask you about CGH as we’re thinking to trying the same next time around. Do you mind me asking you loads of questions about it? I’m also on a fitness regime trying to lose the stone I’ve put on over the last two treatments. So far I’m eating healthily (low GI), doing Davina McCall in the mornings & walking 3 miles a day… week one is over & I’ve put on 2 lbs… Um!  Hope that you’re having more luck….

Saffa – how are you doing I think it's donor EC is this week so I hope you aren’t freaking out too much and that there are lots of lovely eggs   . Looking forward to hearing the news xx

Sobroody – I hope that the headaches have gone… Good luck for the scan today.  there are lots of lovely follies.. x

Pinpin – how did you get on on Saturday? Hope that the IV was easy. Fingers crossed that those horrid CD56 have plummeted.. xx

Hi to wanabemum, ratsy, lalaby, cath, choice, peg2, bunny-kins and cozy... and everyone else. 

AFM – I’m waiting for my LAD retest and uterine biopsy results. I’m booked in to see ARGC on 23rd for an initial consultation and am also seeing DrG the same afternoon as I’m becoming more and more keen to cycle with him (bit fed up of never seeing the same person at other clinics, whereas with DrG it’s always him and he’s so lovely). I also went to the GP this morning – was hoping to get karyotyping done on NHS but he flatly refused. He also said he wouldn’t pay for clexane or steroids as they are for ‘fertility’. I tried to explain how they are for immunes but he was having none of it. They are however re-doing some of the level 1 tests that I somehow managed to miss. Do you think being off pred for only a week will mess with my results? 

Wow - that was a long one... 
Nic xxx


----------



## niccad

Saffa - sorry - our posts crossed. Fingers are crossed for you and I hope you get the call nice and early tomorrow


----------



## agate

niccad said:


> Agate - how are you holding up? It must be so tiring just being in bed with your feet up. Do you have lots of boxsets to watch? Thank you so much for all your advice on here.. you really are a life saver x
> 
> AFM - I'm waiting for my LAD retest and uterine biopsy results. I'm booked in to see ARGC on 23rd for an initial consultation and am also seeing DrG the same afternoon as I'm becoming more and more keen to cycle with him (bit fed up of never seeing the same person at other clinics, whereas with DrG it's always him and he's so lovely). I also went to the GP this morning - was hoping to get karyotyping done on NHS but he flatly refused. He also said he wouldn't pay for clexane or steroids as they are for 'fertility'. I tried to explain how they are for immunes but he was having none of it. They are however re-doing some of the level 1 tests that I somehow managed to miss. Do you think being off pred for only a week will mess with my results?
> 
> Wow - that was a long one...
> Nic xxx


There are some (small) advantages to being me - I can't think of anyone who has had as much practice at doing nothing!  I just wish there were more tv programmes that lasted less than 30 mins to suit my concentration span.

Which tests are you having done? I could make a better guess at your question if I knew which ones.

Saffa: good luck for the call. hope you are over the cold too.


----------



## Saffa77

Thanks Niccad last time I got the call at around 1pm!!  Hopefully it will be sooner - also at work too so as soon as I see the phone ringing will be going somewhere quiet to talk - no doubt I will be here in body tomorrow but not in mind!!!

   

Sx


----------



## niccad

hi agate - the Dr took my list of level 1 tests as he didn't have a clue. Definitely doing ANA and thrombilia but can't remember which other ones he ticked...  
thanks (also for your advice on the LIT thread) x


----------



## agate

thrombophilia means 'likes to clot' - its normally a panel of several tests - mainly for acquired clotting disorders (rather than the inherited thrombophilia ones like MTHFR that Dr G does) - all or most of those tests shouldn't depend too much on steroids I don't think - although some of them are tests for antibodies which cause clotting so in theory, steroids could have an impact - I think you've been taking clexane already - so I don't think you would learn much more from those tests anyway because the clexane should already have been dealing with any clotting probs.  I presume the clexane will be well and truely out of your system by the time you have them?

ANA test results don't appear to be affected by steroids, from what I can find, but the normal Tx for a positive titre is steroids/IVIG/IL, so the result might not affect your Tx?

May as well get them done if they are free though!

Our GP wouldn't fund karyotyping, clexane or anything else either (until I had first pg scan and after that the drugs I was still on were free)

(sorry if my posts today aren't so lucid - feeling v sick)


----------



## Ourturn

Saffa - good luck!    

Ells - hope your cold gets better...mine finally seems to be easing. Drink lots of OJ! Good luck with the tx!

Niccad - today I had a headache free day   If I lived in London, I would cycle with Mr G. 

Hi Agate, Coxy, Blueprimrose, Berry, Deegirl, Diane and anyone else who is around. 

Had a mostly good day. Re the bad my clinic have suddenly gotten really arsey over the celexane and gestone they agreed to prescribe (I have most of it, just missing some 20mg celexane). Nurse has asked for a letter from my private doctor. I said I can provide a prescription and test results...she said that 'might' do   Its because the pharmacy are questioning why they are prescribing it. I explained why I needed it, nurse told the consultant and he wrote an nhs script...what is the problem!   DH reackons its the expense...cost cutting etc..can't they see this is increasing my chances!  

Re the good, had a suprise at my stimming scan..day 7 I usually have v little..last time 'no follicles worth measuring'. Well my lining has gone from 3mm last Tuesday to 8mm today   We have two follies on my left ovary and 4 on my right (had NO follies on my right last time)..measuring 13mm - 5mm with some smaller follies comming through! Mustn't get two excited as they could be eggless, but I am feeling hopeful that the accupuncture, humira, LIT, steroids and celexane have helped things along this time. Will be interetsed to see what todays e2 number as it was just 220 on Friday. But I had a HUGE blob of (sorry tmi) EWCM this evening so hopefully that means my e2 is on the rise.

Had my first Intralipid drip with [email protected] nurse and that went well. Other than feeling VERY cold and bleeding loads when she put the canula in my hand (that will be the celexane). 

Does anyone thing ec could be Friday am? I think it would be Saturday but just don't know what my follies will do...I seem much further along than normal for this stage. If so I have ivig booked pm. Would this be a problem?

Thanks 

Anna x


----------



## Cath34

Thanks for the reply Agate and Saffia. I am due to have IVIG tomorrow which should make a difference. I have managed to get my remaining ivig on the nhs!!!!!! I am still in shock but soooooooo pleased, although she did tell me yday that the rules for giving it are changing as we speak and pregnancy is not classed as being a proven reason for giving it to lower nk activity. Hopefully though it wont come in in the next 3 months!!! We need more research and evidence published to show that it does help in pregnancy!!
Hope everyone is ok?


----------



## ells

Cath thats fab news well done on getting that one paid for.  Totally agree that they need to do more research into it all.

Hope everyone else is well.  

Saw Dr G yesterday, lovely as always!!  I just phoned PA's secretary to try and move my LIT forward blimey   she yelled at me!  I had to then explain to her that it was due to some of my crohns medication and the steriods.  Dr G wanted me to have it before we start stims which will be in March, he has told me to start the pred on days 5-6 and I know I cant be on the pred for the LIT.  So not sure that we will be able to do it   .

Ells


----------



## agate

Ells - I honestly didn't like PA much or find his secretary v helpful.  Can you switch to Dr T? - he's much nicer.

Cath - that's fantastic getting your IVIG paid for.  How on earth did you convince the NHS to do it?

Anna - if you really think EC is going to be moved forwards, could you move your ivig forward by a day?
Follicles are supposed to grow at between 1mm-3mm per day, and I guess they will aim to trigger when most follicles are between 15mm to 18mm so it doesn't sound as though friday would be impossible, but you'd have to be instructed to trigger tonight if it was going to be friday.  Sorry for the late response - I thought I'd replied to you and only just realised that I hadn't.

Saffa: any news?


----------



## MissyMinx

Hi Ladies,

Ells      to being shouted at!  How impossibly rude.  I hope you're ok and you work it out.

Agate, hello and   hope those feet are up!

Well done Cath for the IVIG - that's brilliant. x

Thinking of you Saffa.    

Anna - sending your follies lots of        to you. 

Niccad, how strange about your DH's sample after he'd not had a drink - no wonder you struggle to convince him now.  Sending you    Not long till your appointments now. x

Hello to all the F&G ladies, sorry to those that I've missed, but sending you all  

AFM I'm feeling a bit harrassed today I'm afraid ladies, and I can't believe what a stupid thing I've just done.  I just called my NHS clinic to book in for our ICSI in May/June as I believe they're getting full up as far as April now.  I left a voicemail for the Nurse Specialist asking her to give me a call and book us in etc.  My  NHS clinic are totally against immune tx, and it was only when I put the phone down from leaving the message that I realised I've referred to my NHS consultant as Dr Gorgy throughout the voicemail.  How unbelievably stupid am I?!!      What a fool.  If she asks, I'll just explain that I was reading an article online about Dr G when I was leaving the message, which is true, but I amaze myself sometimes, I really do - and not in a good way!

Sending all you ladies lots of   and  

Em.x


----------



## Diane72

Hello All,

MissyMinx, its tough having to juggle the different beliefs in the health system. So much for patient choice and empowerment that you have to hide that you are having immune treatment. Fair enough if they don't feel there is sufficient evidence for the NHS to pay for it but that shouldn't prevent you 'topping up' your treatment privately.

Agate, I hope all is still going well and you are taking it easy

Ells, yes Mr. Armstrong's secretary is a bit of a battle-axe, I too found her rather abrupt last year, I think she forgets how much we are paying to have PA do a 2 minute job. Maybe you could do it in Greece instead.

Cath, I'm amazed you got IVIG on the NHS, well done

Anna, great news all is going so well. As Agate says you will have to trigger in advance so if needed you could change your IVIG last minute. P.S. I bought the Patrick Holford book.

Niccad, any questions you have on CGH-fire away. Gorgy is now able to do it as LWC (who he uses) started doing CGH in January this year, which avoids trecking up to Nottingham to CARE. Welcome to the low GI club!

Ells, hope the humira does the job and your levels were OK

Deegirl, Hello! I'm having a laparoscopy as they couldn't collect from my left ovary on the last round of tretament and they thought it may have been due to adhesions that they couldn't reach it. However, I am thinking of having a hysteroscopy too in order to make sure everything is OK as the last one I had was a few years ago at ARGC.

Berry, glad your MIL was supportive, your SIL still makes me mad  

Saffa, any news?

AFM, I'm just waiting to get my TB results back to find out if I can start humira next week

Hugs to everyone else,

Diane x


----------



## Zeka

Diane, think I may have to research the low gi diet if you recommend it. I'm desperate to lose weight and am making no headway. Problem is I've just started working again after 10 mths and my work clothes really don't fit me - altho I'm still trying to squeeze into them! :-o. Not a good look!

Hello to everyone else - I don't post often at the moment but read daily and pray you are all doing well on your journies. One step at a time eh! Not sure what my next one is..
Zeka x


----------



## Ourturn

Ells - cannot believe she shouted at you! You should think about going to Athens. I had to move my 2nd LIT foward due to taking steroids with tx

Agate - looks like ec will be Monday with trigger on Sat. Would you say I am still ok to have my ivig Friday pm? Would struggle to do it tomorrow. 

Em - don't worry, they probably won't make the connection! 

Cath - how on earth did you manage to get IVIG through the nhs? 

Zeka - Low GL (Glycemic Load) is the latest thing..look at Patrick Holford. 

Hi Diane, Missyminx and et all  

AFM - day 9 scan today. Lining still 8mm, Just two follies on the left (10 mm + 11m), 4 on the right (17mm, 16mm, 16mm, 7mm) Nurse thinks only the three on the right are viable..but I am praying the two on the left catch up. Want me to reduce menapur to 4 amps (a 1st for me!), rescan Friday with egg collection probably happening on Monday. E2 on Monday had shot up to 1500 so its probably double to triple that today. BUT I am nervous, last time I had 8 follies, high e2 but produced 2 poor quality eggs with no et. 
But have to stay positive and hoep these follies all containg eggs. I am much further along now than ever before ie follies have growm much faster. Maybe the humira, lit, steroids and celexane have all helped?
Managed to get a script for the remaining 20mg celexane I need (phew)

Question - I need to sort out a lad/nk restest for a week on Monday but can't get down to London. I can get blood drawn locally and set up an account with fedex or dhl, BUT how do I get the blood forms and containers? Do I call DR G, pay him and ask him to post everything to me? (I should be able to get the cost of the tests back via my private health again) 

Thanks 
Anna x


----------



## agate

Anna: for the retest - phone akbil and pay her over the phone and tell her you need tubes sent. She will get the form sent round to TDL with instructions to overnight you the tube kit.  then you need to get the bloods drawn on mon or tues and sent next day by 9am post back to TDL.  Obviously if its a LAD, she'll need to do a form for your DH as well. 

If your EC is mon and say you do day 3 transfer that thats thursday. which is 6 days (if I can count?) from your ivig which isn't too bad (optimum is supposed to be around 7 days but this isn't anything like an exact science) and you've already had one drip, I think - am sure it will be fine.


----------



## Ourturn

Agate - yes that's right...would be a Thursday transfer. I have already had IL drip (Monday) Sorry to be dense who is Akbil? 
Thanks again
Anna x


----------



## agate

sobroody1 said:


> Agate - yes that's right...would be a Thursday transfer. I have already had IL drip (Monday) Sorry to be dense who is Akbil?
> Thanks again
> Anna x


Dr G's receptionist - not sure how her name is spelled but that's what it sounds like.


----------



## Ourturn

Thanks!


----------



## Ourturn

Agate - if I ask for nk retest will that include my dq alpha? Although it was only rasied by a fraction I'm curious to see if the humira I took for my unk's has bought it down! 

Was interested to read that you think you may not have needed so many drips had you had LIT earlier. 

x


----------



## deegirl

Thanks Diane x


----------



## agate

sobroody1 said:


> Agate - if I ask for nk retest will that include my dq alpha? Although it was only rasied by a fraction I'm curious to see if the humira I took for my unk's has bought it down!


you mean TNFa not DQa I think - no, you'd have to pay for a separate test for that - its the TH1:TH2 cytokine test. can't remember how much it costs, but probably too pricy to do just for curiosity.



sobroody1 said:


> Was interested to read that you think you may not have needed so many drips had you had LIT earlier.


seems logical to me that IF subchorionic bleeds are linked to increased immune response (NKs and TNFa), and IF low LAD in pregnancy is linked to increased immune response (also NKs and TNFa), then having a higher LAD (better blocking antibodies to switch off the NKs and TNFa production) before you get pg would be less likely to give you the heightened immune response that MIGHT have caused the bleed. but this isn't something we can prove, I don't think.


----------



## Ourturn

Agate - yes I did...won't bother then 
Thanks again
x


----------



## ells

Afternoon ladies,

Missyminx, you sound like me - I am forever putting my foot in it   .  I am sure that you will get through the explanation without any probs   .

Diane hope that the TB results will be good and you will be able to get on with the humira.

Zeka, at least you can still squeeze in!  If you are like me I am very stubborn about getting bigger (and smaller) sizes!

Sobroody and Agate, Athens is a no go, I just couldnt get the time off work as we are really busy and I know that I will be having time off for tx etc and dont want my team asking all sorts of questions, plus we have other team members off.  I was a bit   with Paulette but Dr G did tell me to ring him if I can any probs, so if I dont hear from PA next week I may have to give Dr G a call to see if he can sort something out.  He did say that he is very close to getting LIT service ready to go in Egypt - he said it was supposed to be ready at the beginning of March but now looking like end of March.  He also said he is almost there with having it set up at the clinic just an issue with the lab doctor or something.  

Agate, hope you are still resting up hunni.

Sobroody, hope you get your bloods sorted out.  I havent been brave enough to DIY it!

Hope everyone else is okay?

AFM I have a really horrid cold which I think is yukier because my immune system has been so supressed and I had the swine flu jab, so feel pretty rotten at the mo but hopefully tomorrow will be better.  Seeing the clinic tomorrow so should have our timetable.  I now know when to do everything with Dr G so I shouldnt get lost   .
Anyway ladies, hope you all have a great evening.

Ells


----------



## Newday

well I am 2 intrallipids down FET on Monday just hope this LAD thing (not tested) due to donated embryos isn't a problem I don't know about
Dawn


----------



## Chicky Licky

Hi Dawn

Been thinking about you lately. I've got everything crossed for you hun. Hope the transfer went well today if this is the Mon that you mean.

Let us know how you got on.

Shellie
xx


----------



## fi7

Hi all

just popping on to say, sorry for the lack of personals i am reading as often as i can but not always time to post.

Diane - i wish you luck with the TB results and hope to see you in athens, we are at the hilton too.  It was nice to see you albeit briefly at Dr G's 

cath, - credit to you on the IVIG, not sure how you managed it but i am always delighted to hear of anyone saving anything in this game. 

sobroody, exciting to see your cycle is going well, fingers x'd  also i saw you mentioned about steroids and lit, are you not supposed to have them at the same time? what gap should you leave?

Zeka - are you not running around the office in your lunch hour!  I think shopping is the answer, you look healthy to me!

nice to hear some of you are moving forward and going through cycles, very exciting , i have everything crossed for you.

AFM well off to athens soon for the LIT, waiting to hear back from biopsy to see if need humira too.
Got another sperm test back for DH yesterday and after being good for a few months it is now crap again (normal forms 4%) we have tried everything but it just seems to go up and down,  if anyone has any magic ideas let me know

big hugs to all

fi


----------



## Newday

Shellie next Monday 15th
dawn


----------



## Peanuts

Hi girls

I've been away for 3 days with work, so just catching up on you all.  Have been really hectic, and just been told I've got an interview for a new job I applied or a few weeks back on a whim  .  Have made so many choices at my work thinking that I'll be prg soon so shouldn't take the risk, so was a bit sick of putting everything off - now looking like I could be starting a new job just when I'm starting txt!!    Ah well - will see what happens!

Niccad - doesn't muscle weigh more than fat - I'm sure people keep telling me that!    Keep up the exercise and healthily eating it'll soon kick in to action  

Agate - I'm sure your attention span is lasting more than 30mins keeping up with everyones posts!    Getting sick of Quincy and Murder She Wrote yet?  How are you feeling?  

sobroody - wow, well done on those lovely follies, thats great to hear - heres a wee follie dance for you - Grow follies grow        Stay positive hun

ells - sorry to hear about you're cold, hope you're feeling better soon hun 

MissyMinx - oh dear, I hope the NHS guys didn't realise you're slip with Dr's names!    I'm having a similar worry as haven't told my NHS clinic about extra txt with DrG, so will try not to repeat your mistake! 

Diane - good luck with your TB test, hope you manage to get your Humira sorted.    I wasn't able to take it as had 2 tests come back Indeterminate, but DrG has put me on extra intralipids instead.

Big hugs to everyone I've forgotten  
Take care
Dx


----------



## mag108

in bed sick ladies!
Got back from athens x 2nd trip, went to work today felt grim, had acu, crawled home, crawled to bed,   (vomiting, the runs, achy limbs)    xxx


----------



## ells

Evening ladies,

Mags   hun sorry to hear you are feeling really rotten   .  I hope that you feel better tomorrow.

Sobroody, how are you doing hunni?  Hope the stims are going okay, any news on ec yet?

Saffa, how are you doing?  Hope your embies are settling down for the next 8 or so months.

Agate, how are you feeling hunni?  I hope that you have been resting well and that you have had no more scares.  When is your next scan?

Dee, hi hunni, how are you?  

Louise, hope you are okay.

Diane, any luck on the TB results?  Hows your health kick going? 

Lalaby, I really hope that you are okay as we havent heard from you for a bit.

Peanuts, good luck for the job interview, I wouldnt put anything on hold. You go for it girl    .

Cath hope you are doing well.  Belly rubs to you.  

Cozy, how are you doing?  When's the next scan?

Newday,good luck for ET?  Hope that you feel okay after the IL.  Are you doing anything 'extra' with this round with supps?   .

Shellie, hope you are well.

Missyminx, hope you are okay.

Hope everyone else is doing okay, sending    to everyone who needs them.

AFM, well my cold seems to be doing better thank goodness!  Went to the clinic this afternoon and I start dr'ing tomorrow morning   .  The nurses were lovely and said it was fine to get the gestone, so hopefully [email protected] will ring next week to sort out delivery.  DH has to do a frozen back up just in case as his count is very very low and they really had to look for his swimmers last time.  They did give him some tips on trying to improve his    but I think he felt a little   as he was outnumbered by us 3 ladies but at least he cant moan at me about it as it is now medical fact   !  We had to ask about timings because DH is due to go away on business and needs dates, so we got to OTD and it could be .....1st April   so we better not get any nasty april fools   .  

I do have a question ladies, if I am lucky and manage to get LIT sorted out with PA how much time do I have to leave between LIT and starting the pred?  Also, Agate you may know the answer to this, would I be okay doing the LIT and being on my immunosupps?  I have a feeling we arent going to be able to get this done in time but we will see.


Ells


----------



## Saffa77

Ladies sorry no personals!! just a quickie out of 10 Donor eggs 5 fertilised and have 2 on board and the other one is being observed as was a 6 cell so they will keep that one till day 6 and if good then freeze otherwise they wont freeze so even tho we had 10 eggs only 2 transferred was  a bit dissappointed but he seemed happy with it and yay at least I have two!!  and hopefully this one blasto.

Hi to all else have to go at hotel PMA PMA

Will read back once I get back in a few days.


----------



## agate

Saffa: congrats on being pupo - rest up now and think implantation thoughts!

Mag: sorry you are sick, hope it passes asap.



ells said:


> I do have a question ladies, if I am lucky and manage to get LIT sorted out with PA how much time do I have to leave between LIT and starting the pred? Also, Agate you may know the answer to this, would I be okay doing the LIT and being on my immunosupps? I have a feeling we arent going to be able to get this done in time but we will see.


Dr T recommends you wait at least 2 weeks after LIT before taking steroids, but Dr A commonly gives LIT (he only gives 1 dose) to ladies during their stimms (either when they are already taking steroids or are about to). The risk with LIT and taking steroids and other immunosuppressant drugs isn't that it would do you any harm, but that if they interfere with your antibody producing cells then the LIT wouldn't work as well. Dr A's secretary's email is on his website - can you email your query and get him to advise you with regard to the specific medication you are on? If you are doing his protocol, I guess you should go with what he advises you to do (although he is a gynaecologist rather than an immunologist like Dr T).


----------



## berry55

Saffa - Yey!!! PUPO!!!! congratulations!!!!! 

Agate- just wanted to give u a hug   xxx

Sorry for no personals tonight. I have been such a rubbish FF the past few weeks. I will b on 2morrow nite with personals. Hope every1 is doing ok. xxxx


----------



## ells

Thanks Dr Agate     .  I will drop him/her the email and ask if my drugs would be an issue and see what they say.  I would like to give it a go but will go with what he suggests.  I think i will do the email now!

Saffa - this is the mantra ' I am pregnant, this is working, I am pregnant, this is working....' !  COngrats on being PUPO.

Hope everyone else is okay.  Thank Crunchie its Friday     .

Ells.


----------



## MissyMinx

Hi Ladies,

Saffa   congrats on being PUPO.  Sending those embies lots of snuggly vibes    

Ells, glad to hear your cold is getting better, and hope that you get a response from your clinic soon.

Agate,   to you.

How're you doing Berry?

Mags - so sorry to hear that you're poorly.  Hope you're feeling better soon.

Sobroody - hope you're doing ok.  

Peanuts - definitely don't do what I did and get your Consultants mixed up!!  It makes for a very cringeworthy conversation the next time      It's a nightmare not being able to be honest, isn't it?  Sending you the very best for the job you've applied for.

Shellie, hope you're ok.x x

How're you doing Newday?  Hope everything's ok.

Fi7, best of luck for the biopsy results.

Zeka, good luck with th research for the GI diet - it's something I've been looking into myself and will definitely try to follow as best I can.

Diane, best of luck for the TB test results.  Sending you  

Hello and   to all the other ladies.

AFM, there was no fallout from my getting the consultant's names mixed up, a Nurse called me back and told me I was too early to book in for our tx just yet, and I need to call back next month to book in for May/June tx.  I'm still watching the flights to Athens for April, and hoping that Dr T gets his skates on and sorts out his LIT clinic dates soon.  I had a bit of a rough day yesterday with one thing and another, I think that IF can be so hard sometimes, and even when other things in your life are going so well, it's like a black tinge around the corners, taking the edge off all other good stuff.  I don't know - sometimes the smallest things can get to me.  A man was absolutely horrid to me when I was out walking the dog yesterday, my dog was on a lead, but his young puppy was out of control bouncing all over mine, and I knew that my dog would get fed up eventually and bite, so I calmly separated them and and got hold of its collar to keep it calm till he arrived.  Its owner ended up shouting at me that he would 'snap my f*%^in neck if I touched his dog again.  When I tried to explain that I was actually trying to protect it from my dog, he said he'd do the same to my dog as well.  He was in my face and screaming at me like someone deranged so I ended up just running home.  Just a horrible day     Nevermind, it's almost the weekend - yay!

Hope you're ok anyway ladies.

Love,

Em.x


----------



## ells

Oh Em - what a scary experience   .  What is wrong with these people   .  Hope you are feeling better about things today - hoping those black tinges will be gone soon!  

Ells


----------



## wanabemum

Hi all

Thank you to everyone for all your help with flights and hotels Have booked flights to heathrow and booked the holdiay inn oxford circus so thank you to you all for your advice. Spoke to Dr G on Tuesday and he is posting me all the tubes and forms for the bloods but havent arrived yet! Have the bloods booked in for Monday so I hope they arrive Monday morning or  we will have to cancel and wait until we get over there to do them. 

Em- hope you are feeling better today, that man sounds like a nutter!

Saffa- congrats on being PUPO, hope you have a nice journey home, take care

agate- hope you are ok and daytime tv is not too boring. 

Sorry I dont know everyone yet, am trying to cacth up on all the posts but am thinking of you all.

Is anyone cycling with Dr G? If he thinks its worthwhile us doing another OE cycle we would consider cycling with him but is anyone else cycling with him or do you all cycle elsewhere? Any recommendations appreciated. 
X


----------



## Zeka

I'm interested to know if anyone is cycling with Dr G too. 
Saffa congrats on being pupo. 
Big hugs to all of you that are having tricky time. And a kick in the end to the man with the puppy!!!

Woooo, its weekend time!
Love to all 
Zeka x
Ps - do jaffa cakes work on the low GL diet? ...they were only mini ones ;-)


----------



## Ourturn

Em - he sounds like a nutter!  

Saffa - congrats on being pupo!       

Hi everyone

Just a quickie - just had ivig with double does of piriton and I feel shattered. EC booked for Monday 11am. Have 8 follies (again), but only 4 are a decent size (21, 21, 17.5, 15) the rest are unlikely to catch up. Just hope we get some eggs! E2 is good so that's something

Anna x


----------



## agate

sobroody1 said:


> Em - he sounds like a nutter!
> 
> Saffa - congrats on being pupo!
> 
> Hi everyone
> 
> Just a quickie - just had ivig with double does of piriton and I feel shattered. EC booked for Monday 11am. Have 8 follies (again), but only 4 are a decent size (21, 21, 17.5, 15) the rest are unlikely to catch up. Just hope we get some eggs! E2 is good so that's something
> 
> Anna x


at least you'll get a good night's sleep with all that piriton inside you!
good luck for monday.


----------



## Peanuts

Hi girls

Hope you're having a good Friday night!

Sobroody - Keeping fingers and toes crossed for EC on Mon, hoping those wee follies catch up and you get a lovely crop of eggs - but try to remember its quality not quantity!  So easy to say I know, but its true honest!     

Missy - what a silly **** with your dog, he doesn't deserve to be a puppy owner!    Hope you're feeling better about things - just think of the extra calories you burnt off running home! 

Saffa - congrats on being PUPO!  Sending you lots of hugs and positive thoughts        Hope 2ww doesn't driv eyou too insane.

Big hugs to everyone  
Have a fab weekend
Dxx


----------



## Saffa77

ladies

thank you all for the PMA!!!  Had my progesterone bloods done at the clinic the day of transfer and they called yesterday to tell me my levels were a bit low so have to up my cyclogest and go in for an injection.  I was trying to avoid the Gestone but think may just need it!!  My cd15 CD5 was 11.6% and I know max is 10% thought I could get away with it, do you think that I can just start my gestone a week into my 2ww does it matter? as I cant start it now as still abroad and will have prescription and home and need to order it from Healthcare at home which may take a few days.  

Sx


----------



## agate

Saffa - sooner would be better than later. can you find the name and phone number of your local (larger) chemists on the net, phone them now and get them to get it in for you ready to collect when you bring your prescription. Places like boots and other chains can normally get it in next day so it will be there for you as soon as you get back.  Don't forget to ask them to get needles in for you too. You need 1&1/2 inch green 21 gauge needles (2 per shot) and 2ml luer syringes (1 per shot). If they can't get them, you'll need to order them off the net online from somewhere like medisave or go to your GP surgery and beg for some to tide you over. In the meantime if you up the pessaries as high as your portuguese clinic will let you it should tide you over, but the shots (and pessaries) only stay in your system for hours rather than days. Maybe your portuguese clinic can give you daily shots until you leave?


----------



## Saffa77

Hi all

Agate thanks for the info went in this morning and they have given me 2 x ampoules of 50mg (so 100mg)of progesterone to take every 2 days and said that would be sufficient but am going to take about 4 of my 100mg Cyclogest in the evening too just to be safe.  I will take these until i get back then get on gestone 100mg in the am and 4 cyclogest at night as soon as I can - will call from here on monday to order it dont remember the dose think its 100mg do you ladies know? thanks for the injection info how long do you think Health care at home would take for them to deliver them?

Sx


----------



## agate

Saffa77 said:


> Hi all
> 
> Agate thanks for the info went in this morning and they have given me 2 x ampoules of 50mg (so 100mg)of progesterone to take every 2 days and said that would be sufficient but am going to take about 4 of my 100mg Cyclogest in the evening too just to be safe. I will take these until i get back then get on gestone 100mg in the am and 4 cyclogest at night as soon as I can - will call from here on monday to order it dont remember the dose think its 100mg do you ladies know? thanks for the injection info how long do you think Health care at home would take for them to deliver them?
> 
> Sx


I think Dr G's normal dose is 100mg gestone daily unless you are taking it on top of cyclogest when its often only 50mg daily. It doesn't stay in your system very long so to take your levels even (more important for immune patients than 'normal' ladies), daily shots are preferable.

[email protected] can normally do next day delivery if you phone before 12pm - but I am not sure if there is an extra charge for it but they will probably want a fax copy of the prescription before they accept the order. Your local chemists will probably be happy to get it in for you and wait until you collect it to see the prescription. You can always use yell.com on the net to get their number.


----------



## Saffa77

Hi ladies

Help im confused now should I just have the 100mg progesterone shot every second day until I go home (as otherwise if i do one every day i wont have enough ampules then also take 4 x cyclogest at night??

What do i do on the other day I dont have a progesterone shot take 4 x 100mg cyclogest am and 4 PM??


----------



## Saffa77

PS ladies can you overdose on progesterone when is too much?


----------



## agate

Saffa77 said:


> PS ladies can you overdose on progesterone when is too much?


Saffa - I don't know whether it helps but I've been taking 400mg cyclogest twice a day plus 50mg gestone

your plan of taking 100mg gestone one day and then 2 (or 3) x 400mg cyclogest the next day doesn't sound like a bad one.

My GUESS is that 100mg gestone is roughly equal to something like 3 x 400mg cyclogest per day (because some clinics give a choice between 50mg gestone or 2 x 400mg cyclogest) - but I don't know for sure.

I know that cyclogest is sometimes used at 3 x 400mg per day if there are problems such as spotting.

The maximum safe daily dose of gestone is 200mg, but its usually limited to 100mg per day.

Do your o/s clinic not have someone you can ask about what higher dose is safe?


----------



## Saffa77

Thanks Agate.  Ok so am on 100mg progesterone shot every second day and the other day 2 x 400mg cyclogest.  Cant speak to the clinic because they dont believe in immune tests all she said to me was the higher the progesterone the better.  So you think I will be ok with what I am doing then?  Hope I am not jeopordising anything by not following what the clinic said but if I go according to the dosages Dr gorgy recommends I should be ok...?

Sx


----------



## agate

Saffa - I am only GUESSING but in your position, I'd either stick with that or maybe do: 
100mg day 1
3 x 400mg cyclogest day 2 
until you can check in with Dr G.


----------



## Diane72

Saffa,

At one point at ARGC I was on 100mg gestone plus 3 x 400mg cyclogest a day, so I don't think you'll overdose. 

Also it is worth you knowing that while on just the 3-4 cyclogest a day my progesterone levels were way too low and when I started the gestone (with or without the cyclogest) they were fine-maybe its just some of us don't absorb the cyclogest so well. 

Ever since then I have always had gestone rather than cyclogest on my cycles and it has done the job for me. If you are stuck and can't get a hold of more gestone short term I would take 50mg daily plus 3x cyclogests and get onto the 100mg gestone ASAP.

At work just now so will catch up with everyone else later,

Diane x


----------



## Saffa77

Thanks ladies

well i am here for a week so cant get to gestone just yet.  But am on 100mg every second day (shot) then will do 3 x 400mg cyclogest tomorrow just to tie me over.  Then when I get the gestone which should be end of this week I will then take the 100mg gestone daily with 1 x 400mg at night does all these changes of progesterone jeopordise things? 

Sx


----------



## Saffa77

PS agate and diane72 how high were you CD19, CD5?? mine were not too high I know max is 10% mine was 11.6% so maybe the 100mg every second day with the 3 x cyclogest will just be enough for me.

S


----------



## Diane72

Saffa,

My CD19 CD5 were as follows:

Jan, 2008: 5.3%
October, 2008: 10.3%
November,2008 (w. immune treatment): 4.3%
December, 2008 (w. immune treatment): 3.6%
March, 2009:1%
Jan, 2010: 7.7%

So generally not a problem, my issues with progesterone I think are either the embryo itself (I always miscarry 6-7 weeks) or that I just don't absorb cyclogest well and intramuscular injection is more direct.

Good Luck!  

Diane


----------



## Saffa77

thanks Diane

Ok I think mine is cos I dont absorb the cyclogest well then.  My first DE IVF i was fine levels were tested during treatment and progesterone was ok this time round obviously not!

Had my shot this morning now will do the 3 x 400mg cyclogest tomorrow.

Sx


----------



## agate

Saffa77 said:


> PS agate and diane72 how high were you CD19, CD5?? mine were not too high I know max is 10% mine was 11.6% so maybe the 100mg every second day with the 3 x cyclogest will just be enough for me.
> 
> S


mine are different every time they are measured. sometimes they are below the limit sometimes they are above (IVIG brings them down better than IL for me). Its very possible that your's are going up and down too which is why cyclogest was enough for you last time and isn't enough this time - sounds like you didn't have any problem absorbing it last time, but this time you maybe have more of a problem keeping it in your blood because your CD19+5+ has gone up a bit? I think take no chances - assume yours are still a bit too high and keep on with 3 x cyclogest (alternating with the shots) until you can get your daily gestone shots sorted and can check in with Dr G.


----------



## Saffa77

yeah you right agate but will properly only get to my gestone by the end of this week!  I have heard that the progesterone shots take up to 8 hours to loose affect and the cyclogest takes up to 24 hours.  Will then do the 3x 400mg cyclogest tomorrow then shot again on Wednesday.

Sx


----------



## Saffa77

can one still get pregnant with a low progesterone?  

Sx


----------



## agate

its not impossible, but low progesterone does not help - bear in mind though that the embryo doesn't get round to even trying to implant until at least day 6ish post EC - so there is time for you to raise/have raised your progesterone since EC day.


----------



## Ourturn

Hi everyone
We got 3 eggs...I am now really worried as its such a small number and from my past history know its unlikely they will all fertilise normally. Just pray they are good quality. Will find out tomorrow late morning if/how many have fertilised.
They changed their sedation policy..same does but staggered so I was awake for the first part but don't remember any pain.

Seeing the local nurse in the morning so dh can give me my first gestone shot under her supervision. I have the 100 m amps of gestone. Do I use the injecting needle to draw it up or use a pink drawing up needle first?

Thanks

Anna x


----------



## ells

Anna,

Congrats on your 3 eggies - I hope they are all golden ones   .  Will you get the call tomorrow morning about fertilisation?  I do hope that your clinic's lurve lab is busy working its magic   .

Agate, how are you doing hunni?

Diane, hows the health kick going?

Saffa, I am going to be on gestone and the lurvelly bum bulletts, my CD 19+5+ were 22%.  Dr G told me last week that the gestone and IL/IVIg would sort it out.  Hope you are able to sort out your px soon.

Hi to everyone else, hope you are all well.  

Day 5 of d'ring today so far so good, really do feel like I am starting to rattle with all these drugs and supplements now!  Would anyone know if its okay for me to take Milk Thistle supps still?  I have stopped taking them at the mo as I was unsure.

Ells


----------



## agate

sobroody1 said:


> Seeing the local nurse in the morning so dh can give me my first gestone shot under her supervision. I have the 100 m amps of gestone. Do I use the injecting needle to draw it up or use a pink drawing up needle first?


Use 1 needle for drawing up, then chuck it away and use a new one for injecting (the drawing up needle can be any size so long as it is long enough to reach the bottom of the ampoule - it can get a bit blunted when you touch it to the bottom of the amp on drawing up - so you need to use a fresh one for injecting).

there isn't really any way you can guess at fertilisation rates between different cycles - each time you are playing with a new set of antral follicles and may have had totally different immune and hormonal conditions. Hopefully this set had the optimal conditions to develop well. good luck.

Ells:I'm really not sure about the milk thistle. The info about it seems conflicting and I can't find a detailed explanation of its biochemistry - to try and guess how it would impact on your immunes. It doesn't sound as though its definitely safe to use during stims (because apparently be estrogen-like) - but it doesn't sound as though its definitely unsafe either, and I am not sure about during DR - perhaps someone else on here will know?

don't forget to drink lots of water and avoid chocs and other saturated fats - you need your NKs/TNFa to be as quiet as possible - and try to drink some pomegranate juice and maybe green tea.

AFM: NHS ob agreed to give me a scan today! its was ok - the hematoma seems to be (almost) gone. the latest NK retest does seem to show that although IVIG and IL both keep my NK a down, IVIG normalises the other classes of cells better (CD19, CD19+5+) - so another IVIG tomorrow. Am off the prednisolone now. Should be off the gestone/cyclogest soonish - although I am anxious about coming off it

haven't had spotting since saturday! I need it to stay away a) so I am less petrified and b) so I can restart the clexane which Dr G says is important to do but can't be done until the spotting has stayed away for a whole week


----------



## Ourturn

Agate - thanks...have pleanty of pink drawing up needle. Good news re the scan! Hope the spotting stays away!     Are you on baby aspirin too?

Ells - don't know about milk thistle sorry. Good luck with down regging    

Saffa - where did you go for your tx?

Anna x


----------



## Diane72

Hello All,

Agate, yes I too would be nervous about coming off things, I guess its natural after all the treatment we take to get to where you are. Glad the hameatoma is almost gone.

Ells, well I'm managing an hour of cardio 4-5 times a week. I'm not entirely convinced exercise makes you lose much weight (unless you're running half marathons) but it does make me feel more fit. I'm 'gradually' losing weight with the diet but I guess gradual might mean I don't pile it all back on, which is my usual when I have done extreme diets and then got back on treatment. So this time I'm trying 'healthy and slow'. Re: milk thistle supplements, I don't know but I'd steer clear of anything I wasn't sure about and just drink lots of water to keep those headaches away.

Sobroody, the girl next to me when recovering from EC on Round number 3, only had 2 eggs collected, 1 fertilised and she now has a baby so I'll   for you!

Saffa, it depends on the definition of 'low'. The levels clinics try and get us to artificially are often much higher than the naturally occurring progesterone levels pregnant women have. Also clinics have different thresholds of what they define as low and I imagine Gorgy, like ARGC did, make that quite a high threshold, better to err on the side of caution.

Hello to everyone else  

I have my first humira injection tomorrow-eeek. I also finally have my 'follow-up' appointment at CARE tomorrow afternoon (can you believe this was the earliest date post-miscarriage), although I've already decided to cycle with Dr. Gorgy.

Diane x


----------



## bunagirl

Hi ladies havent posted on here  for a while, been sorting out my immune protocol with Dr Gorgy.  Period started today so have started drugs for a medicated FET, transfer hopefully around 3rd of March.  
Sobroody - you mention having pink needles for drawing up the Gestone, I dont ave any in my needle pack, only the really big green ones.  Would it be ok to draw up using the green needles?  Has anyone done this before?  Will be seeing Dr Gorgy for a scan on Saturday and to check my estrogen levels I guess I can ask him for the pink needles if I really need them?

Agate so glad that your pregnancy is progressing well and the haematoma is shrinking.  Hope the spotting stays away .
Anna fingers crossed on really strong, healthy embies for tomorrow.  

Love Bunagirl. XXX


----------



## ells

Agate, as always thank you for the info. I am not going to take it hun, I stopped taking it when I started the provera.  Glad to hear that the bleeding has stopped and the haematoma has shrunk, that must be such a relief, and great to see your little one again.  I have no chocolate to tempt me and I have also started my water and milk intake.  I love decaf green tea so drinking lots!  Hope the IVIg goes well tomorrow hunni   .

Diane, good luck for the humira jab tomorrow, I found injecting is slowly stopped it smarting.  Well done with your regime, I have been trying to keep my cal intake down with fresh homemade soup at work but do find I get peckish.  Great news on the cardio exercise.  I am sure that not only will you feel fitter but you will also find the weight stays off for longer as its a gradual drop.  

Hi Bunagirl, I had only green needles with my first lot of gestone, it was fine using them to draw up the 'juice' but remember to change the needle.  The second lot of gestone I had both sets of needles.  I am sure Dr G will be able to sort out something with the needles. 

Hope everyone else is okay this evening.

Ells


----------



## agate

it doesn't matter what gauge/colour of needles you use for drawing up gestone as long as they are long enough to get to the bottom of the ampoule.  If they are very fine though, it will be harder work to draw up the gestone because its quite thick, so blue, pink or green needles are easiest.


----------



## bunagirl

Thanks for your responses ladies!  Have got a little while to go before I need them so maybe get Dr G to sort me out at the weekend.
Cheers!
Bunagirl. XXX


----------



## Diane72

Bunagirl,

I have to confess for 3 cyles of treatment at ARGC I just used a single green needle for the gestone. 

It wasn't until I was at CARE in the last round they give me pink ones to draw up the liquid with as well as the green ones for injection (they told me the pink ones have a filter in them to get rid of any tiny bits of glass that may have shattered into the gestone). 

Diane


----------



## berry55

Hi girls,

Hope everyone is doing ok. I'm just bk from London and got my protocol from Dr Gorgy. I am on perdisolone and clexane from day 5 of stims! I think this is the standard way that Dr Beer does it.... so here goes. Lots of diff things for me this time... i'm so worried that during the EC i will bleed 'cos of the clexane... but Dr Gorgy told me that even if i did it wouldn't b a lot.. and if i do i have just to put the blame on him and it will b fine....   kinda scary!! Also got my prescriptions for humira (another 2 injections if my blood retest show i need it... which it prob will) gestone 100mg for 2ww, the predisolone is 25mg and clexane is 40mg. its so much drugs to be taking... i just hope its all gonna be worth it.    Also Dr Gorgy told me that I had my MTHFR result which I had not had back and it was positive. I cant remember if it was 'heterozygous' or 'homozygous' but he said it was not a problem and I was not to worry about it.. So what does that mean? 

berry xxxxx


----------



## Ourturn

Berry - I didn't have celexane the day of and day before ec. Started again (today) on 40mg

Just had the call...2 out of 3 have fertilised so as long as they cleave, et will be bought foward a day to tomorrow. Will get a call tomorrow am to confirm. 

Anna x


----------



## agate

Anna - good luck for tomorrow. 66% isn't a bad fertilisation rate!  bodes well for development.

Berry - you are probably hetero - otherwise if you were **** he would probably have said you needed high dose folic acid - you can ask Akbil to send you a copy of the result so you have it for sure.

As Anna says - you will stop the clexane when you do your trigger shot and then restart it after you've had your EC (and any bleeding from that has stopped). Oddly enough, before I had immune Tx from Dr G, I had a lot of bleeding at EC (but hadn't been on clexane), then this time, when I had been on clexane (but stopped at trigger) I didn't have any bleeding at EC - so I guess it just depends on what little vessels they hit when they put the aspiration needle in.


----------



## berry55

i forgot to ask... i was told i would b on a high does of gestone for my CD19+ cells, CD5+  which were 35.4.... is 100mg of gestone high? dos that sound normal?? 

Thanks sobroody & agate for the replys xxx

Agate- who is Akbil   xxx


----------



## agate

Berry - 100mg gestone sounds right - if you can't get hold of 100mg ampoules, you'll have to buy 2 x 50mg instead (but you can draw up 2 into the same syringe - so it doesn't mean any extra injections).
Akbil is Dr G's receptionist.


----------



## berry55

agate- thanks   xx


----------



## ells

Sobroody great news on the embies hunni. Sending you a growing dance to help them along:

[fly]              [/fly]

Berry hun, I am doing a similar immune protocol except my gestone is 50mg, I start the clexane and pred on stims day5/6 and then have to go in between days 5 and 9 for IVIG and IL. When do you start the jabs?

Diane, how did the humira injection go today?

Agate, hun how are you doing today?

Hope everyone else is okay.
Has anyone heard how Lalaby and Omni are getting on? Omni must be due very soon.

Ells


----------



## Ourturn

Thanks Agate - I hope you're right   we can have both put back tomorrow. Ist ivf 4 ferts from 6 eggs, all were viable by transfer, 2nd ivf, 2 eggs 1 fert, stopped dividing day 3....so I am nervous! 

Ells - thanks for the dance! 

Hi everyone

Interestingly dh has halved his caffine intake (still has 2-3 cups per day but was on 6!) since last ivf attempt last summer and his count has gone from 120 to 220 million! think that's too big a jump to be a coincidence.

We saw our local nurse this am so she could teach/supervise giving me my first gestone injection. It really did not hurt much at all (suprising considering the size of the needle!) I was suprised how high up the bum the injection went. Whoever told me to warm the gestone in my bra..thank you, it worked a treat! 
Something I didn't realise was that the syringes I had were too small, fortunately the nurse had some 2ml syringes going spare. I would not have fancied two injections! 

Anna x


----------



## Diane72

Good Evening All  

I'm just back from Nottingham. It was a bit of a mammoth drive with the stress of making it on time the whole way as I had only booked a half day annual leave from work for the afternoon. I needed to drive into the Shadwell pharmacist in East London to pick up the Humira first (The TB test came back too late for me to get it from [email protected] on time for a week in advance of the LIT) before driving up to Nottingham for my 4pm 'miscarriage follow-up' appointment at CARE (its so mad it has taken so long, it feels like a lifetime ago already that I was pregnant). But we just made it (arrived at 3 minutes past 4!). The appointment hasn't changed any of our thinking ie. we need CGH because of DH's sperm issues (and he has to stop smoking to address his high DNA fragmentation) and we need to address the cytokines. Nonetheless, I still think it was good to have the confirmation of thinking.

Sobroody, I am so, so praying that those embies keep dividing and the transfer goes well-good luck!  

Ells, thanks for remembering my first ever humira injection. I just did it, unless I got the instructions wrong it seemed to be just the same method of injection as our stimming drugs, so relatively straightforward. I'm feeling paranoid that it should have been more complicated and I missed something! Hope all is well with you.

Berry, as agate said yes 100mg gestone is common and your MTHFR is probably hetro if he didn't reco. 5mg folic acid. I'm really hoping visiting Dr. Gorgy will make the difference for your outcome this time. It seems like forever we have been on the fertility friends board together, its time we had some good fortune.

Agate, hope all is calm in your world and you are being able to remain relaxed. Thinking of you.

Hugs to everyone else    

Diane x


----------



## Newday

Can I ask what might be a silly question can diarrhoea be an immune response to embryo transfer?
Dawn


----------



## agate

it sounds unlikely to me, unless maybe you were someone who tends to get diarrhoea in response to other events that cause TNFa to rise - maybe if you had Crohn's disease and an immune reaction to implantation caused a relapse, or if you were just very sensitive to surges in TNFa (so you'd expect that maybe everytime you caught a cold bug or something you'd get diarrhoea).  I am GUESSING here so I wouldn't rule out the possibility I am wrong, but I think you would be more likely to expect symptoms like sore throat, temperature, feeling a bit 'flu-y', - but potentially, any inflammatory condition that you already had e.g,. arthritis, could get worse if you had a TNFa surge related to implantation.

could it be related to using pessaries? - sometimes they cause upset.


----------



## Newday

Oh dear! I had Et on Monday and last night until 3am I spent throwing up and having the runs. I obviiously have eatedn something that upset my stomach. I was really wretching now I'm worried this will have affected the embryos.

Something always go wrong! What do you think should I be worried?
dawn


----------



## Saffa77

ladies

how you all?  still juggling the progesterone shot every second day and the cyclogest the otehr day.  Am goingt o be ordering the gestone today should get it in the next 2 days or so.  I am 6dp 3 day transfer and feeling ZILCH!!! did any of you ladies feel anything in your 2ww??

Sx


----------



## agate

Newday said:


> Oh dear! I had Et on Monday and last night until 3am I spent throwing up and having the runs. I obviiously have eatedn something that upset my stomach. I was really wretching now I'm worried this will have affected the embryos.
> 
> Something always go wrong! What do you think should I be worried?
> dawn


Dawn - lots of ladies get an upset stomach round that time just from the pessaries, so hopefully it won't affect the embryos.

Saffa - I didn't feel anything at all - except I got a chemical taste in my mouth right at the end of 2ww.


----------



## Newday

Thanks Agate but I think it was some food posioning once I got everything out I was OK
Dawn


----------



## MissyMinx

Hi Ladies,

Newday, I really hope that you're feeling better now.  Food poisoning is horrid under any circumstances, so fingers crossed you've got it all out of your system and you can relax now.  Sending you  

Saffa, up to now, the only thing I've ever felt on my 2ww is really poorly, about 5-7 days after ET I start with night sweats and then feel fluey.  According to Dr G, that was my immune response to the embryos, basically my bosy rejecting them   I've heard plenty of people who get BFP's though say that they had absolutely no symptoms at all.  Please keep that PMA going, sending you  

Agate, how're you doing?  I hope everything with you is good.  Thanks for all your continued fabulous advice. x

Diane, I'm pleased to hear that the appointment in Nottingham helped to confirm your original thinking.  Best of luck to your DH for giving up smoking.  I told my DH that with everything I'm having done - giving up drinking and smoking was the very least he could do   He gave up smoking in 2007 when we were first referred, and although he put on quite a lot of weight, his swimmers improved dramatically.  Sending you  

SoBroody - sending your embies     and dividing      Hoping all goes well for you today at ET, and that we're celebrating your BFP in a couple of weeks time.  Thinking of you and keeping everything crossed.

Ells, how're you getting on hun?  How's the water and milk drinking going?  I really hope you're ok.  Sending you lots of  

Berry, I think I'll be having the same amount of Gestone as you as our results were quite similar for the CD19+5.  I hope it all goes well for you.  Thinking of you.

Bunagirl - best of luck for your FET - will be watching to see how you get on and keeping my fingers crossed for your BFP.

Sorry to those that I've missed. Hello and   to all.

AFM, there's no news except the health kick continues.  I'm waiting for a referral to a rheumatologist from my GP as my optician suspected I had a complaint called Sjorgren's Syndrome.  When I posted about it on the Immunology board, a couple of girls who had it said it was worth getting investigated further.  I suppose forewarned is forearmed.  I'm not really sure what the process will be, but I can only imagine that the rhuematologist will do an immune screen on me and see whether I do have any immune complaints.  I feel well though, so I'm not sure if I'd be wasting his or her time.  I'm trying to get into the swing of taking my Metformin and Thyroxine too - I swear I'll be rattling by the end of this process.

Sending you all   and  

Em.xx


----------



## Newday

Em yes thanks it's all stopped now doesn't appear to be anymore. Just hope it hasn't affected things
dawn


----------



## agate

Newday said:


> Thanks Agate but I think it was some food posioning once I got everything out I was OK
> Dawn


I didn't explain that v well. I meant that because GI upset was quite common (albeit for non food poisoning reasons), that it shouldn't be too much of a problem for implantation.


----------



## Saffa77

any of you had really bad bruising with the clexane.  Did mine this morning and its a huge black swollen bruise!!!  because of the travelling i have lost all my airbubbles on the injection they seem to have gone to the top do you think that is why I have bruised so badly??

S


----------



## agate

Saffa - it always seemed random to me - sometimes no bruise, sometimes a little bruise, sometimes a red spot, sometimes a big bruise - all depends on what vessels you hit with your needle.  if the air bubble is at the wrong end of the syringe you can tap the syringe to make it float up to the other end.


----------



## Saffa77

ok phew so no need to panic then its just saw to touch and very swollen!!!


----------



## Newday

my whole stomach is purple
dawn


----------



## Saffa77

its so bad isnt it!  its actually quite scary and here I thought I had mastered the art of clexane already as the last 6 shots i had only had tiny red spot!  But I rushed the injection this morning and was half asleep   Off for my progesterone shot this afternoon, couldnt get an appointment this morning!

Sx


----------



## Pinpin

Hi girls

I see you girls have been busy chatting on the thread there is so much going on on here I am hoping to see some new BFPs very soon  

Saffa - since i started clexane 4.5 months ago I must have had at least 10 bad bruises (swollen, black and takes ages to fade  ) the rest of the time i either get no bruise or little ones. Good luck for the 2 ww and I hope to see you post your BFP very soon.

Diane - it sounds like you have a very strong action plan and glad your thoughts were confirmed yesterday at Care.  

Newday - sorry to hear you have been so poorly last night   - I don;t think this will have affected your chances of implantation. Another FF friend had an upset stomach as well just after ET and is now pregnant with twins  

Missy Minx - I think you are doing the right thing in getting the investigation done and I would not worry about wasting the consultants time if I were you. If there is even a slight possibility that there may be something wrong then you are entitled to get it investigated and if nothing's wrong then no harm done it's the consultant's job anyway.

Sobroody - now you have been fully briefed on doing the gestone injections I'm sure you'll be fine. They tend to bruise and become a bit more painful after a while. If you want a pain free injection then I recommend you use a bit of EMLA cream to numb the area. You need to apply about 15-20 min before injecting  

Berry - the other girls have said it already don't worry clexane won't make you bleed at EC as you stop it for a couple of days. As for MTHFR hetero I am too and Dr G put me on Folic acid 5mg which I am actually still taking as not sure it;s safe to stop even at 20 weeks pregnant!

Agate - how are you doing today? I hope ivig went well yesterday and you didn't need the bucket  

Bunagirl - my LIT buddy! so happy to see you here on the thread and glad that you are geetting your FET very soon   Did you retest after the LIT? I take it the results were good and it was worth all our treaking out to Greece as you are now ready to cycle  

Hi to everyone else   Lalaby and Omni I hope you are both well.

Pinpin x


----------



## Donkey

Hi Girls

Dawn you poor thing having food poisoning    try and rest and relax now

Anna good luck for ET I have everything crossed for you  

Diane glad you follow up went well and you are confident in your action plan  

Berry my CD19+5+ are far higher than yours 50% and Dr G has given me 100mg of gestone and then added a cyclogest for good measure even though he said the gestone on it's own should be fine, so don't worry.

Agate I hope you are resting up and lookign after yourself  

I went to see Dr G yesterday to get all the presrciptions for my immune tx as my nhs clinic only provide crinone gel...nothing else!!!  I am waiting for a call back to get an exact start date...very nervous.

Take care ladies
Donkey xxx


----------



## Ourturn

Thanks for all the good wishes...they worked! Didn't get the call from the unit until 10am, by which stage I was in tears convinced it was bad news. But both embies divided, both top quality (grade 1)  , one 2 cell and one 6 cell which they said is good for day 2. DH has called them Sean and Sophie (apparantely girls divide more slowly). This tansfer was hurt but was the smoothest so far...probably thanks to x2 diazapan. Had my accupuncture and now watching a film in bed. 
So that's one major hurdle overcome. Just praying all this immune treatment will let my body hold onto them. OTD is 3rd March.

Anna x


----------



## Chicky Licky

Hi Anna

Congrats on being PUPO!!!! Top grade embies sound fab. 

I've got everything crossed for you!!!

Shellie
xx


----------



## Saffa77

congrats Sobroody!! Take it easy easier said then done as im losing it here!

Just been to get my progesterone shot it was soooooooooooo sore!! tears came running down my cheeks!  OUCH!!! imagine having them every day!!!  The clexane bruise seems to be getting bigger should i worry?  its a bit elevated too feels like a lump underneath!  oh gosh i am worrying over everything today.


----------



## Saffa77

its black but also going red in the middle?!


----------



## Ourturn

Saffa - are you warming up the gestone? Also make sure the buttock being inject is RELAXED. I just find it stings a little. Re the bruising with celexane mine really vary. Some are huge others are tiny. 

Dr G's sec is posing out blood bottles for my lad retest. Getting blood drawn early am Monday at the Nuffield (they are charging £50 for drawing blood from me an dh) 
Now I need to get it to tdl before 9am Tuesday right? Fedex will not do one off deliveries and will only give me an account if I send 1 package per week. DHL will set me up with an account if I send once package per month (do I need this?) cost without any discounts would be £78  
I could do post office next day delivery gauranteed by 1pm. Would this be ok? Would be MUCH cheaper! 

Thanks 

Anna x


----------



## Chicky Licky

Hi Anna

I'm doing the DIY LAD retest this time. GP is charging me £25 to draw both our bloods but I'm providing the bottles.  Then I'm Fedex'ing them to the US. 

With Fedex you don't need an account. You can send as a one off. I have a contact whose excellent - her name is Jo Murphy - tel 02476 707 273 - [email protected]  Give her a call and she'll talk you through the whole process. You can ring her to book it in the day before you require the collection too.
First time I contacted Fedex to enquire about it all I was sent the wrong forms!!! Jo really knows her stuff and makes it sound really easy - she'll also send you the correct forms!!!

Hope this helps
Shellie
xx


----------



## Ourturn

Thanks Shellie, but I am going via Dr G as that way I can get an invoice and get the money back via my private health co. 
As long as the blood gets to tdl by 1pm Tuesday its ok so think I might just go Royal Mail guaranteed delivery by 1pm 

How much is it costing you to do it that way?
Anna x


----------



## Chicky Licky

It worked out getting on for £100 cheaper! Can't remember the exact cost now as I worked it out a few weeks ago. 

Special delivery should be fine I would think.

xx


----------



## agate

sobroody1 said:


> Saffa - are you warming up the gestone? Also make sure the buttock being inject is RELAXED. I just find it stings a little. Re the bruising with celexane mine really vary. Some are huge others are tiny.
> 
> Dr G's sec is posing out blood bottles for my lad retest. Getting blood drawn early am Monday at the Nuffield (they are charging £50 for drawing blood from me an dh)
> Now I need to get it to tdl before 9am Tuesday right? Fedex will not do one off deliveries and will only give me an account if I send 1 package per week. DHL will set me up with an account if I send once package per month (do I need this?) cost without any discounts would be £78
> I could do post office next day delivery gauranteed by 1pm. Would this be ok? Would be MUCH cheaper!
> 
> Thanks
> 
> Anna x


Anna - post office also do next day delivery before 9am - costs about £11. Have done that one for retests several times with no problems. That one is better than the next day before 1pm (in case you miss TDL's fedex pick up).

congratulations on being pupo - lets hope this is the one.


----------



## ells

Evening ladies,

Congratulations Sobroody, you must be very proud of your embies   .  Keep those feet up and enjoy the films!

Saffa, the bruises sound painful.  I believe you only have to worry if you dont stop bleeding, but I am sure one of the ladies will tell you .    Keep positive hun.

Diane, sounds like you had a nightmare trip, nothing worse when you are trying to get everywhere on time   .  We have always struggled to get to Dr G's on time but last week - we got there almost an hour earlier   .  We didnt leave at a different time either.  It sounds like you have all the info you need.  Glad the humira went well, there really is nothing to it - its scary how easy self injections become and actually how I much prefer doing them myself.

Missyminx, alway best to get everything checked out at least you'll know whats going on   .  I think we will all be rattling and leaking together   .  

Newday, hunni I hope you are feeling a lot better today.  Your embies are not going anywhere hun, they are going to stick (we were told to think of the womb like a sticky jam sandwich) .  I look forward to hearing your BFP soon.      

Agate, hunni I hope you are well and resting up!  Are you starting to get a bump yet?

Cath hope you are well and enjoying your pregnancy.  

Lalaby, hope you are okay hunni.

Pinpin hun, how are you feeling?  I bet you are starting to get a nice little bump now - sending belly rubs your way.

Donkey,  good luck for the phone call.  I too wish the NHS would pay for some of the immune tx as it gets very expensive.  i wish they would do some more research and support what we already know.

Shellie, how are you doing hunni?

Berry how are you doing hunni?

Niccard, Nix, Deegirl, Mags and everyone else, I hope you are well.

AFM, well I had the last provera tablet yesterday so now waiting for AF to arrive which should be Friday if she's playing ball, no probs with the injections at the mo so all going well.  Drinking my 2lts of water and my pint of milk each day, also trying to get a glass of pomegranate in too.  Trying very hard to be careful with my carbs and making sure I have enough protein, quite hard though but getting there I think.  Havent had a call from PA's secretary about the LIT so I am not going to stress about it, if I cant get it before stims I cant get it.  I figure that if i need it then Dr G should be about ready to go when I get my BFP (thats my PMA   ) and I can get it then.  No point stressing over it all.  Off to get another blood test night to check my bloods from the immuno supps - more stabbing   .

Hope everyone has a lovely relaxing evening.

Ells


----------



## Ourturn

Agate - I'm assuming there will be someone to sign for it a tdl before 9am? Will go for that option then, thanks

Ells - sounds like you're all set! I have been buying up all the fresh pomegranate juice from my local m & s! 

Anna x


----------



## agate

sobroody1 said:


> Agate - I'm assuming there will be someone to sign for it a tdl before 9am? Will go for that option then, thanks


yes there definitely is someone there to sign for it. some bits of TDL are open 24 hours a day.

re pomegranite juice - you can always dilute it with water to avoid getting too much of a sugar rush.


----------



## Ourturn

Agate - good to know thanks..royal mail by 9am it is then   Is there much sugar in fresh pomegranate juice? I don't find it that sweet. I drink one 500ml bottle per day

Anna x


----------



## agate

it might depend on the brand? but most fruit juices have a lot of natural sugars in them and a lot of brands of pomegranite and cranberry juice have added sugar as well.  I probably need to be a bit more cautious with 'sugar rushes' than you because I have a bit of PCOS so I do tend to dilute fruit juice out of habit.


----------



## Angels4Me

Hi folks, 

Havnt been on this thread for some time.

Wonder if anyone can let me know if and what vitamins etc i should NOT take when pg. I had ET today so on 2ww.

Im currently taking,

termeric
calcium
zita west vits(for conception) i know i need to change these soon - anyone know if the high content B vitamins or other vits could be harmful?
Vit C
iron tabs(bit harsh on stomach)
spirolina
marine tree bark (antioxidant)
fish oils (taking clexane 6,000 so not to many fish oils)
selenium

I had probs with tnf and nk cells(nk cells ok now)

thank you
angels


----------



## Ourturn

pretty sure the m & s brand doesn't as its not from concentrate. Cranberry juice is a killer for added sugar though..I tend to avoid it. 

I am really into fresh pineapple juice with sparkling mineral water. at the moment....lovely! 

Angels - I had et today and I am still on:

high dose folic acid 
B6 & B12 vits
Vitamin D
Maca
Spirulina
Royal Jelly 
Tumeric
Zita West vitafem
Zita West dha (x1 am only) 
75mg aspirin
celexane 40mg
pred 25mg
Gestone 100mg

Shake me and I rattle! I will probably stop the tumeric if I get a bfp


----------



## Peanuts

Hi girls

Just lost a hugs post!   Not been on in a few days and was trying to be good and do lots of personal, but will have to be quick this time!

Sobroody - congrats on being PUPO, thats fab news about your great grade embies, and hope they're snuggling in for the long haul.      Keeping everything crossed for your 2ww   

Agate - really please for you that the haematomy is getting smaller and spotting is stopping    Hoping that next shot of IVIG does the trick and you can start to try to enjoy your prg     

Angels - congrats on being PUPO, wishing you lots of luck for your 2ww!     

Ells - hope AF arrives on time and you can move on with txt - roll on the happy hormones!  

Saffa - hope the bruising is settling down, I always found it a bit hit or miss with the bruises, but only ended up with a few big ones.  Have you tried Arnica cream on them to help?  Good luck with 2ww     

Donkey - any news back on your start date?  Hope you get some good news soon  

I'm off tomorrow for the weekend and then straight to Athens on Monday for LIT, so will be another week until I'm back on!! I'm turning into a rubbish FF, but I am thinking about you all honest!  

Big hugs to everyone else 
Dxx


----------



## agate

Angels4Me said:


> Hi folks,
> 
> Havnt been on this thread for some time.
> 
> Wonder if anyone can let me know if and what vitamins etc i should NOT take when pg. I had ET today so on 2ww.
> 
> Im currently taking,
> 
> termeric
> calcium
> zita west vits(for conception) i know i need to change these soon - anyone know if the high content B vitamins or other vits could be harmful?
> Vit C
> iron tabs(bit harsh on stomach)
> spirolina
> marine tree bark (antioxidant)
> fish oils (taking clexane 6,000 so not to many fish oils)
> selenium
> 
> I had probs with tnf and nk cells(nk cells ok now)
> 
> thank you
> angels


you should be fine with most of these.

You'd probably want to stop the pycnogenol (maritime pine bark) because it hasn't been tested for pregnancy and check your total intake of selenium (add in whatever is in the zita west multivits).

The tumeric is more likely to be safe in pregnancy than the pycnogenol (because its a common food ingredient eaten by millions of pregnant ladies), but it hasn't been specifically tested for pregnancy, so you will have to take a decision on that one as to whether to stop it or not.

You might want to stop the iron supps unless you are actually anaemic - cyclogest and other progesterone would probably make you constipated in early pregnancy and iron tabs would make this worse. There should be enough iron in your pregnancy vits for you not to need this unless you actually have anaemia. the zita west vits will be no problem - you can switch over to a pregnancy formula when you get round to it. You shouldn't really need the extra vit c if you are taking the multivits.


----------



## Bling1975

Hi girls,

I hope you could help me with our test results that I got by fax today. I would like to know a bit more before making an follow up appointment with Dr Gorgy. As english isn't my first language I find it hard to talk on the telephone.

As I understand it we have a partial DQ alpha match, very low LADs and slightly raised TNF-a. I also have a very low % of CD19+ cells, CD5+ and I don't know what that is. I assume we will need LIT, Heparin and aspirin, but do we need anything else?

DQ Alpha (DH): 1.1, 3.1	0101, 0303
DQ Alpha (Me): 1.2, 1.1	0102, 0104


MTHFR Mutation:	Negative


TNF-a:IL-10(CD3+CD4+): 31.4*      Ref: 13.2-30.6
IFN-g:IL-10(CD3+CD4+): 15.1	        Ref:5.8-20.5


NK assay w/Intralipid

50:1 w/Intrapelid 1.5 mg/ml:	11.0
25:1 w/Intrapelid 1.5 mg/ml:	8.7


NK assay (% killed) panel

50:1 11.2	Ref: 10-40
25:1 6.4	Ref: 5-30
12,5:1 3.5	Ref: 3-20

IgG conc 12.5 50:1 2.7
IgG conc 12.5 25:1 3.9
IgG conc 6.25 50:1 7.4
IgG conc 6.25 25:1 4.0

% CD3 83.4	Ref: 60-85
% CD19 2.2	Ref: 2-12
% CD56 11.1	Ref: 2-12
% of CD19+ cells, CD5+ 1.0*	  Ref: 5-10


Leukocyte Antibody Detection

Flowcytometry: Negative
(T-cells) IgM+: 1.0
(T-cells) IgG+: 1.5
(B-cells) IgM+: 9,8
(B-cells) IgG+: 13.9

I would really appreciate any input from you.


----------



## agate

Bling1975 said:


> Hi girls,
> 
> I hope you could help me with our test results that I got by fax today. I would like to know a bit more before making an follow up appointment with Dr Gorgy. As english isn't my first language I find it hard to talk on the telephone.
> 
> As I understand it we have a partial DQ alpha match, very low LADs and slightly raised TNF-a. I also have a very low % of CD19+ cells, CD5+ and I don't know what that is. I assume we will need LIT, Heparin and aspirin, but do we need anything else?
> 
> DQ Alpha (DH): 1.1, 3.1	0101, 0303
> DQ Alpha (Me): 1.2, 1.1	0102, 0104
> 
> MTHFR Mutation:	Negative
> 
> TNF-a:IL-10(CD3+CD4+): 31.4* Ref: 13.2-30.6
> IFN-g:IL-10(CD3+CD4+): 15.1 Ref:5.8-20.5
> 
> NK assay w/Intralipid
> 
> 50:1 w/Intrapelid 1.5 mg/ml:	11.0
> 25:1 w/Intrapelid 1.5 mg/ml:	8.7
> 
> NK assay (% killed) panel
> 
> 50:1 11.2	Ref: 10-40
> 25:1 6.4	Ref: 5-30
> 12,5:1 3.5	Ref: 3-20
> 
> IgG conc 12.5 50:1 2.7
> IgG conc 12.5 25:1 3.9
> IgG conc 6.25 50:1 7.4
> IgG conc 6.25 25:1 4.0
> 
> % CD3 83.4	Ref: 60-85
> % CD19 2.2	Ref: 2-12
> % CD56 11.1	Ref: 2-12
> % of CD19+ cells, CD5+ 1.0* Ref: 5-10
> 
> Leukocyte Antibody Detection
> 
> Flowcytometry: Negative
> (T-cells) IgM+: 1.0
> (T-cells) IgG+: 1.5
> (B-cells) IgM+: 9,8
> (B-cells) IgG+: 13.9
> 
> I would really appreciate any input from you.


With those DQa - for every 4 embryos that you and your DH make, theoretically, 1 would have the same DQa as you and be at a higher risk of having more immune attack from your body - so its a 25% match. Some doctors (but not Dr G) suggest having embryos put back 1 at a time to avoid the chance that you have a matched embryo put back with an unmatched embryo - where your body MIGHT have an immune reaction to the matched embryo which reduces the chances for implantation of the unmatched embryo as well as the matched one.

Your B cells IgG+ should ideally be at least 30, and preferably over 50 - Dr G will probably suggest LIT as something for you to consider.

Your TNFa ratio is a bit higher than ideal so he will probably suggest a course of humira to try to bring it down.

Your NK killing power looks ok, and you respond well to IVIG (but probably won't need it) but not so well to intralipid.

Your CD19+5+ B cells are low - higher levels of those cells are associated with autoimmune conditions and antihormonal antibodies but you don't seem to have a problem with this - although this test result (like all the others) can fluctuate over time for the same person. It doesn't suggest that you are likely to need a particularly high dose of progesterone (gestone/cyclogest/crinone) - a standard dose should be enough.

None of those results above suggest any thrombophilia (blood clotting) condition, but you may have other (level 1) results that suggest this. If your other results are ok, then Dr G is likely to suggest a low dose of clexane (heparin) and aspirin, but if they show any problems, he will probably suggest a higher dose of clexane.


----------



## niccad

sorry for lack of personals but rushed off my feet. Question - I am in the middle of having an arthitis flare up and am in loads of pain. I haven't had one of these for over 3 years (before TTC) so am not sure what i can take. I used to take Volterol which is a high dose anti inflammatory or a ton of nurofen. I know that with TTC i can't really do this so does anyone have any suggestions as I'm in so much pain....
Thanks

(congrats to the PUPO girls - Dawn, Sobroody & Angels4me & sorry for not posting for a bit - this back thing has got me in pieces. Ells - fingers cross for AF coming tomorrow xx)
Nic xx


----------



## agate

Niccad - voltarol is the brand name for diclofenac - its from the same drugs family as ibuprofen - they are both non steroidal antiinflammatories.  I THINK the reason they are not recommended for TTC is their tendency to cause bleeding which could cause early loss/MC and reduce the chance of implantation.  Unless you think you might be pg or 2ww (when ideally you should try and stick to paracetamol), I would go ahead and use it if it helps you the most.  I guess you need to think about your TNFa levels for when you cycle next because this flare up could have elevated them and you might want to discuss humira again.  It MIGHT be a good Tx for both fertility and your arthritis pain (although the NHS tend to only prescribe it for arthritis if everything else has been tried already because of the cost) - otherwise it might be worth discussing steroids with your GP for the same reason? hope it calms down soon.


----------



## Newday

well sickness has stoped but still have the runs. day 3 after ET can't convince myself it could work. Want sympotms I know it's too early but we are the same aren't we
Dawn


----------



## Bling1975

Agate - thank you for having a look.

I am a bit scared of the Humira, but I will of course do anything if that means we can keep a pregnancy and get a baby. My level 1 tests didn´t show anything at all.

So the DQ alpha match means that 1 in 4 of ours won't make it regardless? 

That's a bit scary. My husband has had cancer since we started treatment and unfortunately that made him completely sterile. So we only have 3 embryos left on ice before we have to get a donor and I know how important this is to him.


----------



## Ourturn

Bling - my understanding is that its not that 1 in 4 might make it, but that 1 in 4 might set off more of an immune response....which can be dampened with steroids an drips. 
Agate is this right?

x


----------



## agate

yes as sobroody says - it doesn't mean that 1 in 4 are non viable, it means that there is A CHANCE that 1 in 4 MAY cause more of an immune reaction than non matching embryos.    1 in 4 is only a statistical chance - it doesn't mean it will work out exactly true, as you will be aware that not all eggs/embryos will be viable for other reasons, so there is a big element of chance/randomness - like tossing a coin - you know that if you toss the coin 4 times it should be 'heads' twice and 'tails' twice - but it probably won't be on such a small sample. 

Its also possible that a matching embryo doesn't cause any immune reaction at all - that your body correctly recognises them as something non-hostile from markers other than DQa.

hopefully the drugs you will take (probably steroids, maybe IVIG/Intralipid, maybe humira) and maybe the LIT could quieten things down enough so that even if your body is predisposed to attack that embryo, it doesn't.

If your body goes on the attack, its main mechanism would be to ramp up the killing power of your NK cells (partly using TNFalpha as a signalling mechanism).  Drugs like IVIG and intralipid dampen down some of the signalling responses so that the killing power is reduced.  There isn't a single protocol for this issue - different doctors have different ideas.  Dr S's protocol for this is steroids, plus intralipids 7-14 days before ET, again on a positive test and then monthly for several months into pg.  Dr G tends to treat more flexibly with steroids, plus IVIG and/or intralipid 7-14 days before ET, again on pg test, and then to retest your NKs and see how things are every few weeks during pg before deciding what you need.

Given your remaining 3 'own' embryos, you might want to see if Dr S in Las Vegas would give you a free phone consult to discuss whether you should have them put back 1 at a time.  He is generous with his time and he has strong views on DQa matching - which he calls 'allo-immune' infertility - (and is anti-humira - unlike Dr G and the Beer clinic).  He might give you a totally different view from other doctors which could be confusing but it depends whether you are the sort of person who likes to get as much information as possible and then make their own decision or not? You can find his clinic's website at haveababy.com - but if you book a phone consult - make sure you ask for Dr Sher and not one of the other docs.  He has an article about DQa matching on his website but I didn't find it very easy to read and I found it pretty depressing.

As to humira - some doctors don't like it, but some do and get really good results.  lots of ladies on this site have had it without any major problems.  it is used a lot for non-fertility Tx like rheumatoid arthritis and Crohn's disease.


----------



## Saffa77

my bruise is looking black still but hasent grown PHEW that really did frighten me yesterday.  Am 7dpt3dt and still feeling all normal aaaaargh no twinge nothing.  Boobs are feeling normal not bigger nothing just feel normal.  Totally convinced its a BFN same as my last cycle.  aaaaaargh what did you preggie ladies feel?  this is too much surely your body has to give you some sort of sign? reading on the 2ww on FF everyone gets a little symptom me nothing.  Just found out our 3rd embie didnt make it to freeze grim so we have nothing in freezer that means would have to start again another 9000 euros!!!!!!


----------



## agate

felt nothing different on 2ww - except bloating from the progesterones and then had a metal taste in mouth right at end of 2ww.  otherwise nothing.

we never had anything good enough to freeze.


----------



## Newday

Saffa I know how you feel I am 3 days post 5 day transfer so embies are 8 days old yours are 10 I want signs too even though I know they mean nothing
hang on in there

dawn


----------



## Saffa77

thanks ladies its horrible isnt it!!!! does my head in.  I dont even feel bloated cos of the progesterone aaaaaaaaaaargh just feel like everything has come to a standstill and need to stop drugs to get the af to come.  Its weird.  So agate your boobs were not sore? and you didnt feel like something was nibbling at your insides?!


----------



## agate

no - nothing.  I had 'road map' veiny bbs - but they are v common when taking prog. felt bloated from stims and then it never went away - initially because of prog and then because of pg/prog.  

IMHO its pretty unlikely that you would feel much at this point - if you think that a typical 12 dpo blood HCG level might only be 25 which is tiny compared to 15,000 at 6 weeks pg (when a lot of ladies still don't feel very much other than needing to pee more often), it seems unlikely that you would feel all that much so early.


----------



## Ourturn

Agate - had the spotting stopped totally now? How are you feeling? 

Saffa - I had no frosties either. Just the two embies which went back 

Dawn - watching for any symptom is all part of the 2ww. One lady on the pr thread (with immune issues) has just had her 1st scan (saw a hb  ) and she had NO symptoms whatsoever

My boobs are bursting out of my bra, pretty sore (they were on fire yesterday) and veiny..but I know this is down to the trigger shot/gestone. Embies are only 3 days old today. Its going to be a VERY long 2ww.

BTW I'm having a little light brown spotting, do you think this is down to et yeterday?

Anna x


----------



## Diane72

Hello All,

Saffa, I've done enough cyles now and had enough cycle buddies who had positives or negatives to know that you really can't tell anything from whether you have symptoms (could just be the progesterone) or don't have symptoms at all(your HCG is still low) ,whether you are pregnant or not. Unfortunately mostly only the HCG test will give the answer(with the excpetion of unfortunate OHSS sufferers who can have it re-triggered by pregnancy). Nonetheless, I know the 2WW sends you absolutely crazy and sending you  

Newday sending you lots of luck for you 2WW too!  I hope you are feeling better.

Bling, Agate has said it all. Good Luck!

Angels4me, sounds like good advice from agate. 

Peanuts, see you on Monday in Athens!

Sobroody, so happy to hear all has gone well with the et    

Ells, sounds like its all happening now. Its so annoying about Paul A. but as you say its better not to get stressed. Sending you lots of fairydust  

Donkey, have you got your date yet? Re: The NHS, I tried my GP twice and got turned away for everything  

Pinpin, gosh I can't believe its over 20 weeks now. I wish I was still on that journey with you my ET buddy but alas it wasn't meant to be.....maybe this time though  

Missymix, good luck with the rheumatologist. Hope the metformin isn't causing you tummy troubles.

Agate, I hope all is still well with you and baby is growing

Berry, see you in Greece   

Sending everyone else hugs  

Diane x


----------



## Bling1975

Thank you all for your information and advise. If I need Humira for TNF-a, how many shots (and when) do you normally need?


----------



## agate

Bling: I would GUESS that for your levels it would be a course of 2 shots, 2 weeks apart, then wait 2-3 weeks and retest your TNFa ratio.

Diane/Anna:  I'm off all the pred now and had another IVIG on tues retest in 10 days. Still have quite a bit of morning sickness and spending most of the time in bed. Already have enormous belly but I guess I have no abdo muscles cos I am so unfit - so I probably show more than someone healthy - MW said my uterus was all the way up to my belly button today. Can't feel anything though except discomfort/stabby pains - but its still early to feel much. No spotting at the moment (fingers very very much crossed).  Expecting to restart the clexane at the weekend and then stop the gestone and later taper off the cyclogest. Going to get a private scan in 2 weeks - then after that the NHS have agreed to give me scans every 4-5 weeks.  Have started to believe the pg might 'work' again - but would be totally panicked again if I got another bleed.  So trying to ward it off by resting/not doing anything.


----------



## Pinpin

Hi girls

Saffa & Newday - I had no promising symptoms whatsoever in my 2ww. In fact I was totally convinced it had not worked and the only thing I did get was period pains from 2 days before test days that increased on actually test day and I kept knicker checking until Dr G told us it was a BFP! No symptoms can be a good sign !   

Diane72 - oh my lovely   with a plan as thorough as you have the next treatment is definitely the one for you   x

Agate - so glad the spotting has finally stop   like you I am getting a bigger bump now and some cramping since about 16 weeks which the Dr says is ligaments and contractions as the uterus stretches   I'm feeling distinct little kicks now and you will soon too  
The NHS will be giving me scans every 4 weeks also from 20 weeks due to my UC in order to follow-up the baby's growth.

Bling - I think Agate answered your questions very well. I hope you come to the best decision for your 3 little embies  
From your history it seems that you do get BFPs from Tx therefore you have some good chances with immune Tx to get your much deserved baby.

So broody - I'm pretty sure I had been told at ET that I could get some spotting 

Niccad - I hope your back gets better soon  

Lots of love to all

Pinpin x


----------



## Ourturn

Agate - you should feel positive, its sounding really good!   I'm sure your bump is lovely   Is staying on gestone until 16w normal for girls like us? 

Hi Pinpin & Diane


----------



## agate

12 weeks is a bit more normal.... but Dr B said 16 weeks... and Dr G agreed I shouldn't try to come off it until all the bleeding/spotting had settled.  I want to come off it, because apparently I should feel more comfortable (its quite a high dose and it slows down your digestion so much!) after I come off it but its also a bit scary to think of coming off it too.

Pinpin: on the knicker checking, I thought I'd just (re)mention that the same day I got the BFP I was bleeding heavily and it kept on for weeks - so I guess knicker checking might not really have told me anything much (not that I'm not a 'check-every-5-mins' girl )


----------



## Donkey

Hi Diane

I had my zoldex implant on Tues and I have to start sniffing to stay down regged on 15th March until w/c 29th Match.  Thwy will phone sometime that week to tell me to start stimming.  It will come round soon!

Hope you're well and see you on tuesday

xx


----------



## deegirl

Hi girls, I haven't posted on this thread for ages due to trying to organise LIT etc but thought I would pop on to say hello to eveyone  

Ells - there seems to be a lot going on with you, hope AF has arrived today.  How are you feeling?  Sending you lots of    You are always so kind to ask about others.

Agate - hope you can come off the gestone soon.  Has it not been really hard to find non-bruised injection sites after injecting for this long?  Can gestone only be injected into the hip/buttock?  I took gestone with my fresh ICSI and I hated it, husband had to inject me and it left me with sore lumps under the skin....not nice.  Knowing you though, you have got it down to a fine art  

Dee x


----------



## agate

Dee - DH does it for me - he does complain a bit that he can't find an unbruised bit, but he always does it in the end!  sometimes it hurts but sometimes it doesn't - just seems random.  I don't have many lumps but I put that down to rubbing the inj site with a cotton wool pad for a min after the inj each time.  Apparently it can also go into the outer thigh but its supposed to hurt more there, so I've stuck to the hip.  I did plan to try and learn to do it myself, but I'm cowardly and kept putting it off.


----------



## Zeka

Agate - so lovely to hear that you are doing well and the spotting has stopped. Its an inspiration to us all. Just what I need right now, as feeling a bit blurgh about it all.


----------



## Newday

Saffa how are you this morning? My bug is settling down slowly but now Dh has it and of course he is dying. Day 4 post 5 day transfer and nothing!
Dawn


----------



## Saffa77

Agate so happy that you are not spotting anymore!!! you deserve this to work.

Newday - had another cry this morning to DP and he is like stop being so negative but come on I feel absolutely ZILCH still boobs have gotten even smaller deffo no road maps going on there!!!   and stomach not even bloated the only thing that is stopping AF is the progesterone!  One has to feel something!!!  So not holding much hope hows you?  felt anything?

Hi to all else.


----------



## berry55

Hi girls, just had a call about my TNFa... but i have not spoke to Dr Gorgy as i dont really see the point in paying £90 to be told what i already know! I spoke to Dr Gorgys receptionist who told me that she knows the level is still very high and i have to go ahead with the prescription Dr Gorgy wrote for me. I feel really really REALLY rubbish now 'cos she said its still "very high" so i asked he if she could tell me what the reading was and she said no she was not aloud to. Which is fair enough. I will have the results posted out to me. Dose Dr Gorgy not email your results out? I feel really really upset now   Any words of wisdom? xxx


----------



## niccad

Berry -    She can't read them out but she will fax them. Do you have a fax number?


----------



## berry55

no i dont have a fax. Only email.  xxx


----------



## ells

Morning ladies,

Just wanted to pop on quickly between meetings!

Berry hunni, dont stress yet, wait until you get the results through so that you can see if there has been a difference with your levels hunni.  If you are having IVIg and/or IL they will also help your TNFa, so dont give up hope hun.  I know Dr G told me that sometimes the numbers start dropping after 2 weeks so the humira should still be working - the effects are supposed to last for 6 months.  My crohns cons told me that the effects can take between 2-4 weeks to start working    .

Great news on the spotting Agate   you must be so releived.  I bet its nice having a lovely bump.  Great news on the scans too, that must be a nice comfort to know you can have them so regularly if you want them.

Deegirl hope that you are now booked in for your LIT, it such anightmare getting everything organised in the cournty let alone having to go to Greece.

Saffa, hunni sending you lots and lots of     .  Dont give up your embies need your positivity.  

Newday, glad to hear that you are feeling better, I hope your DH doesnt feel too sorry for himself   .  Sending you lots of     hun.  

Sobroody how are you and your lovely embies this morning?  Hope you are resting and taking things easy.      .  I had some brown spotting a couple of days after ET last time, my clinic told me that it was probably from EC and nothing to worry about.   

Diane do you know when are actually going to start tx again?  Have you packed for Monday yet.

Donkey, good luck for the phone call hun.  I bet you cant wait now.

Niccard that sounds very uncomfy hun.  I do hope that the tablets kick in and help.    

Bling, good luck, it sounds like with some immune help you will get your BFP and your baby!    

Pinpin, sounds like you are doing really well hun.  The little kicks must be such an amazing sensation.  

Peanuts hope all goes well in Athens.

Missyminx how are you hunni?

Zeka sending you a big   .  

Cozy, how are you doing?  Have you got your next scan coming up?  

SarahH hunni, been thinking about you.  Hope you are okay and have had some answers on the TB thing.  

Shellie, hope you are okay hun.

Mags, how are you doing?

Louise, hope that everything is well with you and everything is going to plan.

Hi to everyone else    

AFM, had a really hectic week at work so thankful its Friday!  AF didnt show up this morning but I am feeling quite hot and my hips and legs are starting to ache so I am guessing it will be here soon.  I am seeing my acu lady this afternoon and she worked magic last month so I am sure she will sort it out!  Picked up my clexane 40 yesterday from Tesco but they wouldnt give me back my px that still had gestone on it   last time they crossed out the meds that had been dispensed and gave it back to me.  What a pain in the   .  So I now have to get another px from Dr G  but I am supposed to be getting it from our clinic so I am hoping that I wont need to worry about it!  Still waiting for my TNFa results, should be back next week, so will phone Arkvil on Weds to see if they have come back.  Hope everyone has a lovely day and weekend.  Sending   to everyone who needs one and   &      to the PUPO ladies.

Ells


----------



## agate

berry55 said:


> no i dont have a fax. Only email.  xxx


berry - look on the net for 'free fax to email'. there are several services which don't cost you anything. they give you a personal fax number which sends direct to your email account - so you won't have to wait for post from Dr G. Dr G doesn't like any results to be given out by phone in case there is a misunderstanding, but he is fine to get results faxed out to you - and don't panic about the results - he wouldn't have given you a prescription if he didn't think you were going to be a '2 boxes of humira' lady - he only gives out prescriptions that he thinks you are going to need. I presume he only wanted you to to have the retest in the middle in case there was a 'miracle' immediate fall in your levels.


----------



## berry55

ells- i'm not having ivig or IL... so thats why i'm feeling a bit down  Dr Gorgy didnt tell me that i needed them... so i'm hoping that he is right. Thanks for the help hun xxxx

Agate- i have just done that free fax to email thing... i will phone Dr Gs and ask for it to b faxed to my new number! lol xxxx


----------



## berry55

Agate- it worked!!!! Thank you for your help!! that has made me feel so so much better 

TNFa before 2 humira shots was 57.6
TNFa After 2 humira shots is 44.0

What do u all think? Do u think thats gd or is it not? I felts better when i actually seen the result as i thought it was gonna be still in the 50s. 

Berry xxxx


----------



## agate

berry those results are good!  everything is going in the right direction and it shows humira works on you.  so it all looks good for your next 2 shots.


----------



## Zeka

Dawn, poor you getting sick after et! Is never straightforward is it. Hope you are feeling better...and dh is coping with it now.


----------



## Newday

Thanks Zeka the nurse has just told me it's probably been norovisus. I am over it now well almost
Dawn


----------



## mag108

Ladies
Stayed off work today in the hope of knocking this bug on the head (finally!).

*Have been exploring getting doing DIY LAD retesting (I guess am getting tired/worry re expense).
Shelli very kindly explained how to go about doing it but I am left with a question. Will a GP's surgery know what tubes are which and will they provide them?*

ells: thats mean about the px! Hope you kicked up a stink! 

Agate: I am so glad everything seems to be going so well for you. You are our star poster by the way in case you didnt know!

Saffa: Wishing you all the best with this tx hun  

Sobroody: I imagine the spotting is because of ET, wishing you all the very best  

Berry: Looks like things are going in the right direction.

Deegirl, berry and everyone going to Athens, wishing you all the very best. It really is all very straightforward. The bell for the clinic is the third bell from the top on the middle row!

Pinpin: Glad it all is working out so well! How exciting!

Newday: You've had the bug too! Glad my bloke didnt get it, would have had to take the week off to look after him!

Donkey 

Shellie and Lou 

big hi to everyone else.....turns out to be a busy day after all, there is no rest for the wicked!


----------



## ells

Berry, your results look great   .  I am sure you will see a big difference after the next lot of jabs!!  

Mag's hope you get rid of this bug its not nice. There see, to be quite a few things going around.

Ells


----------



## Diane72

Hello All,

Berry, thats great news- a really good drop so you are responding to the humira.

Mags, hope the bug goes  

Agate, keep those feet up and continue to take it easy

Dawn, glad to hear you are over the worst of it, you so much didn't need that.

Ells, we're looking to start treatment end of April but I will not start until I can see all my immune parameters are perfect and DH can control his smoking to improve DFI. I'm not going to have another miscarriage just for the sake of it-i'd rather wait until everything is right. How annoying that they wouldn't give you your prescription back.

Donkey, not long now. Just so you know Gorgy is going on holiday I think some time at the beginning of April (can't remember exactly what date) which is why I shifted from end of March to April down-regging as I am doing my cycle with him. If you are having intralipids on Day 6 of stimulation (?) it might mean you need to get a Healthcare at Home script before he leaves-its worth checking.

Anna, the brown spotting may well be due to the ET. Re: bursting out of your bra, it made me   Mine never seem to do anything even on the round where my Day 14 HCG was >400, but maybe thast because they are always bursting out-I need to stick to that low carb'ing-the joy of PCOS hormone imbalances! 

Pinpin, 2WWers and everyone else, sending you  

See all you fellow Greece LIT folk on Tuesday, we're leaving tomorrow for Athens........

Diane x


----------



## agate

mag108 said:


> *Have been exploring getting doing DIY LAD retesting (I guess am getting tired/worry re expense).
> Shelli very kindly explained how to go about doing it but I am left with a question. Will a GP's surgery know what tubes are which and will they provide them?*


LAD test is 1 yellow SST tube for you and 3 green lithium heparin tubes for your DH. (they would know what you meant by green and yellow blood tubes). You can check what tubes are needed for what tests from RFU's website. Its 3 green lithium heparin's for NK follow up or for NK assay and 3 green's for cytokines/TNFa, and its 1 blue each for all the thromobophilias and 2 blue for DQa - according to the list I have here. GP's surgeries will definitely have these tubes available and they don't cost much so your GP would be pretty mean not to let you have them - but there is no guarantee that they will. I guess you'd have to clear it with your GP first?


----------



## Angels4Me

agate: thanks for the vitamin advice. Good luck with your pg


----------



## mag108

thks agate...how DO you KNOW soo much!
X


----------



## Angels4Me

hi all

just lost post as computer in greek!

I am positive for Heterozygous MTHFR C677T mutation. can you tell me normal dose of clexane for this? I have been given 6,000.

Also, is it ok to take eskimo fish oils and evening primrose oils whilst pregnant/ET

thanks again
angels


----------



## agate

angels

for MTHFR hetero the 'normal' dose is often 4,000 iu = 40mg - but 6,000 iu (60mg) isn't an enormous dose - it may be the dose your doc prefers to use for MTHFR hetero or there may have been other issues that came up in your level 1 tests that suggest clotting issues that need the slightly higher dose eg APLAs

Re eskimo oils: they are definitely beneficial for neuro/brain development of the embryo/fetus (and might help with NKa), but the only thing you need to be cautious about is that they also have a blood thinning effect, so its possible that with clexane as well, you could overthin the blood, especially if you are taking v high doses of fish BODY oils (never take fish LIVER oils when TTC/pg).  You would probably want to stick to a moderate/low dose of fish oils, maybe discuss them with your doc with reference to taking them alongside clexane, and maybe get a factor X clotting test with your doc to make sure you aren't 'under-clotting' - but maybe I am being overcautious.

Re: EPA - Its only my opinion - I am not a doctor or a naturopath - but it it was me, I would stop it on 2ww/pg.  Its a phytoestrogen so it could affect your natural hormone levels and in theory it could bring on uterine contractions which could lead to mc, and it hasn't been tested for safety in pg.


----------



## Angels4Me

agate: thats really helpful. i wont take EPO. I will take my eskimo oils in low dose. (i assume they are not fish liver oil. did you mean cod liver oil?
thanks again
angels


----------



## agate

I am pretty sure that all the ones sold by eskimo are fish body not fish liver - if its fish liver it would probably say somewhere on the pack that you shouldn't take if pg - and the ingredients would have to say cod/halibut/fish liver oil - cod liver oil is always from cod (obviously) but sometimes you can buy halibut liver oil or just 'fish' liver oil - which I guess means whatever big fish livers they can get that day at the factory?   I think 7 seas or someone has recently brought out a special version of cod liver oil  where the vitamin A has been removed (excess vitamin A in a form that's difficult for the body to get rid of - rather than as beta carotene which is easy to excrete, is the reason why fish liver oil isn't safe for pg) - but all 'ordinary' fish liver oils can have too much vitamin A for pg/ttc - so its just safer to stick to fish body oils and premium brands like eskimo are definitely gentler on the stomach than some of the cheap supermarket ones.


----------



## Ourturn

Agate - you are a font of knowledge   I'm pretty sure I took too many fish oils on a previous tx (x4 zita west dha) + aspirin but at the time was told not to inject heparin until a bfp. 
I take just x1 dha capsule per day as I'm on 40mg celexane and 75 mg apsirin. Does that sound right to you? 

I have a stiniking cold..pretty sure its sinusitis. I know all I can take is paracetamol. Drinking lots of water. Anything else I can do? Are vicks or albas oil safe? I am really bunged up  

Anna x


----------



## agate

Anna

I can't find anything which says how much fish oil is safe with clexane - I assume its an individual thing - 1 capsule doesn't sound v much - but of course I don't know the dose in the capsule - and tbh if you told me the dose, i wouldn't be any the wiser. 

It would be better not to use olbas oil or vicks if you can cope without- like other full strength aromatherapy oils they haven't been shown to be safe in pg - and you are at a stage where I THINK the embryos could be v sensitive to volatile oils - the same reason why lots of embryologists ban ladies from wearing perfume on ET/EC day.  These oils don't actually reduce the amount of phlegm blocking up your passages, they just create a 'cooling' feeling which makes you feel as though things are less blocked - so you won't be missing out on anything physically, although it will feel as though you are - which I guess is just as bad?  if you can't avoid them, I guess you should use as little as possible and don't get it on your skin.

Can you use steam inhalation instead?  (either a posh electric thingy from boots or a bowl of hot water with a towel draped over your head). Would a warm or a cold pack on your forehead help?


----------



## Donkey

Anna you poor thing.  I get sinusitus from time to time....it's so painful and makes me feel soooo ill...can't stand light in my eyes, feel so sick, awful, awful headache and faceache and toothache....YUCK.  If it's like that you probably need antibiotics, I'm sure there are some you can have in early pg.  

To help the symptoms inhaling works (bowl of boiling water and towel).  You don't need vicks or albos oil as it's the steam that does the trick.  When I'm bad I have to do it every couple of hours, I hate it but it REALLY helps.  It's a bit disgusting as there's so much snot but it gets rid of the pressure in your sinuses.

Hope you feel better
xxxx


----------



## Ourturn

Thanks Doks. I usually feel better after a shower. I get sinusitis a fair bit (bloody snot is the give away tmi). But I'm pretty sure last time the gp said they no longer think anti-b's help with sinus infections?


----------



## agate

I think your GP is right, anna.  Antibiotics are zero help if its a cold or any other kind of virus causing sinusitis (they only work on bacteria, not viruses) and there are big downsides to taking antibiotics unnecessarily.


----------



## Donkey

Anna, luckily I haven't had it for a while so didn't know about anti biotics not helping, although to be honest I found they did  

I hope the inhaling works and you feel better soon  


Diane, good luck for the hysteroscopy on Tueday morning, you're very brave doing that before the LIT.  We shall park you on the sofa and wake you up when it's your go  

Lots of love
xx


----------



## niccad

Hope you all had great weekends... Dawn, Saffa & Sobroody - how are you getting on 

I’m hoping some of you will understand this… Just got my uterine biopsy results through. From what I can understand it all looks ok, but I might have got this completely wrong:

Endometrial biopsy shows:
1.	Late secretory endometrium POD 10-11
2.	1 CD57+ cells identified/high power field
3.	2-3 FoxP3+ cells identified/high power field
4.	no evidence of inflammatory change seen
5.	no evidence of necrosis
6.	no evidence of hyperplasia or atypia

Comment: CD57+ cells are not increased while FoxP3+ cells appear adequate suggesting appropriate stromal regulatory activity. Positive and negative control sections have been evaluated demonstrating appropriate tissue reactivity with the CD57 monoclonal antibody.

Any clue?? 
Nic x


----------



## agate

ok... I will TRY to translate:

1.  Late secretory endometrium POD 10-11  = means the tissue is consistent with the biopsy being 10-11 days after ovulation
2.  1 CD57+ cells identified/high power field = they only saw 1 uNK cell (which is not a lot)
3.  2-3 FoxP3+ cells identified/high power field = this is good - you want to see some of these cells
4.  no evidence of inflammatory change seen = again good - nothing inflammed suggesting endo or infection
5.  no evidence of necrosis = again good - nothing showing 'dying' tissue
6.  no evidence of hyperplasia or atypia = again good - nothing showing too much tissue growth/cancer etc

CD57+ cells are not increased while FoxP3+ cells appear adequate suggesting appropriate stromal regulatory activity. (this is good - no evidence of uNKs and enough good FoxP3 cells) Positive and negative control sections have been evaluated demonstrating appropriate tissue reactivity with the CD57 monoclonal antibody. (not sure about this bit but I think it means that the test kit that they use for identifying the CD57 cells was giving the right positive and negative response - they use something called CD57 monoclonal antibody to mark the CD57+ cells)

I have never seen one of these before, but I THINK Dr G will confirm in due course that this is a good result, Niccad.


----------



## niccad

You are such a guru Agate... thanks so much. I've managed to get my GP to do karyotyping and do a full thrombophillia (they didn't do it all last time). So pleased that the NHS are helping out. Also getting all my level 1's redone, and as the nurse had lost the list of bloods to do I also added a few extras!! Seeing my NHS clinic, ARGC and Dr Gorgy tomorrow... full day. 

Diane - quick question  re PGD - are you having a polar body biopsy or an embryo biopsy? And did you have DH's sperm tested as well separately?  

Hello to all xx


----------



## agate

i think diane is in athens.


----------



## Saffa77

Well did a sneaky test this am and got a BIG FAT NEGATIVE.  Knew it tho as one cant feel this normal and be pregnant.

Dont know what do to know has have spent a fortune on 2 cycles one only had the 1 to transfer and now a whole new cycle with only the 2 to transfer.  Cant afford to pay another 8000 euros to not have any to freeze!!!  I believe my DP has slow morphology sperm which we only just found out!!! that is why we are having below normal fertilisation rates.  Should I ask them for a discount?  otherwise am thinking of moving clinics what would you do?  8000 euros is a lot of money for 2 embies only.....  Just feel like maybe my endometriosis with all my operations just wont let me get pregnant.  My head is swimming now!!! I know the portuguese doctor will tell me not to give up but am not willing to pay that amount for nothing to freeze.  AAAAARgh what to do?!  Also did this cycle with immune drugs etc should I do these immune drugs with the next cycle??

Hi to all else - newday are you still hanging in there?

Good luck to all else!

S


----------



## Bling1975

Agate - you really know so much! I am very impressed. I hope everything works out for you this time.

Saffa - I am so sorry. I understand that you use donor eggs? Then the result must be very disappointing. My husband had really really poor sperm, but with ISCI they managed to fertilise all eggs and we got 9 blasts for the freezer. Du they do ICSI for you? Is there any possibility to get a "proven" donor that has had a high success rate previously?


----------



## Saffa77

yes its donor eggs.  Yes they did ICSI and yes she was a proven donor both times!!!

Sx


----------



## niccad

Saffa - I'm really praying that the test changes tomorrow. It is perhaps a bit early to get an accurate reading...


----------



## Newday

Not good day 7 af is due tomorrow and I have bad period pains yes I did test this morning and yes BFN!

I just feel this hasn't worked and this will the end of any child for me I had to pressure Dh into this one!
Dawn


----------



## Saffa77

newday - I hear you!!! what do we do now! its such a guttless feeling!!     what irritates the most is you do all the immune drugs on top of it all thinking it will definately help then it dosent! so you left with black bruises from Clexane, sore bum muscles which you can barely touch from gestone and scared veins from trying to find a vein to get intralipid and then still have to wean yourself off prednisolne!!!  PS how does one start weaning yourself off prednisolne??  Dr Gorgy had never told me I had to wean off just know by reading on here.

Sx


----------



## niccad

Oh Dawn....   . Isn't it too early still? You're 7dp5dt aren't you? I thought that it should be at least 9dp5dt to get an accurate result. Testing early is sooooo awful, but saying that testing at all is awful when the result isn't the one we all dream of. I'm praying for you and Saffa.... Please please please let it just be too early... xxx


----------



## niccad

On the pred front DrG would say to just stop if you've been on it for less than 3 weeks. I never listened to him on this front though and always wean... reduced by 5mg every 2 days... xx


----------



## ells

Saffa and Dawn sending big     and a top up for your PMA      .  Anything could happen ladies, dont give up yet!         

Niccard, your results look really good hunni.  You must be pleased.  

Sobroody hope you are doing well and that you are taking things easy.  How are you feeling?

Agate hun, how are you?  Hope you havent been doing too much and are still resting (well inbetween FF   ) .  

Peanuts hun hope you are okay.

Mags hope that bug has clearer up and left you alone now.   

Deegirl how are you sweetie?

Berry how are you doing?  When is your next humira shot?

Missy minx, how are you doing hun.?  Hope you had a relaxing weekend.

Pinpin, Lalaby, Cath and Cozy hope you are all well - bump rubs to you all. 

SarahH, Shellie, Sflower, Zeka, BP. Dippy, Louise, Thumbelina, Fi7, Bling, Peg and Diane hope you are all well and those of you going to Athens have a safe trip.  Hope everyone else is okay.

AFM, well I had a call from PA's secretary this morning offering me an appointment on 12th March but I think that is going to be too late.  I think EC is going to be around the 15th.  I have to ring her back to tomorrow to let her know if I want the appointment.  I'm due to see the clinic tomorrow morning to check that the buserelin has done its thang.  What do you ladies think?  
Also when should I stop the spirulina?  Am I okay to take it during the 2ww?  Hope everyone is having a good Monday!

Ells


----------



## agate

niccad said:


> On the pred front DrG would say to just stop if you've been on it for less than 3 weeks. I never listened to him on this front though and always wean... reduced by 5mg every 2 days... xx


It is standard advice that its ok to stop pred cold if you've been on it for less than 3 weeks (unless you were on it recently before that).

Dawn/Saffa: if these are only urine stick tests it is definitely still possible to still get a positive result. only blood tests are conclusive for early testing. Some brands of tests eg clearblue need 50 iu of HCG to show a positive (which is a lot for early on). I really hope your early tests are just too early.

Saffa: I hope none of the following comments will be relevant and you just need to be patient for another pee test or a blood test.... but you should reasonably expect ok donor eggs and ok sperm to give you an ICSI fertilisation rate of at least 2/3rds. I definitely don't think you should give up but at this point, I would a) consider changing clinics to somewhere which is more open about its fertilisation rates and can demonstrate a good track record of at least 2/3rds fert rate for ICSI and b) get a more thorough sperm analysis done - maybe at a new clinic - I am pretty sure that the reputable clinics in Spain for example always do a full sperm analysis (and freeze of a back up sample) together with tests for DNA fragmentation before you start your DE cycle. If sperm MOTILITY (movement) or MORPHOLOGY (shape) are not normal, then it sounds like there could be issues with sperm DNA fragmentation, in which case, a) you'd want a clinic who have a good track record in picking out the best sperm to use for ICSI and b) you'd want to know if you have sperm DNA issues in case there are lifestyle factors that your DH needs to address to improve your chances.

also: for next time, you'd ideally want to get your progesterone levels up a bit earlier (its possible that your uterine linining wasn't at the right stage for implantation if the progesterone levels weren't high enough early enough - progesterone helps develop the lining but also has anti-inflammatory properties which are more important for immune issues ladies) and maybe reconsider any bits of Dr G's recommended Tx that you decided to skip this time (if there were any - I can't remember if it was just the gestone - although I know you started it later)?

Unfortunately, even if the egg donor is proven, the only way you can be sure whether its sperm genetics or an implantation/immunology issue that have frustrated you, is if you had done PGD/CGH on the embryos.

Even with immune help to fix implantation, not all embryos will be genetically viable, and I can think of several ladies who did pg with Dr G's immune Tx, but not on their first cycle with him.

Ells: I guess it would be better to have LIT than not to have it, but it does sound a bit late. Re spirulina: I think I continued it - I still take it.


----------



## Newday

Interesting I only started utogesten 2 days before ET which was a 5 day transfer
Dawn


----------



## agate

Dawn: is that what Dr G recommended?


----------



## Saffa77

Agate - once again thank you for all your advice exactly what I was thinking too.  Need to do gestone from the word go.  I did ask the nurse if my progesterone being low would affect things and she said it was still early days so would have enough time to get them higher who knows?! but yes you right.  So yes it was only the gestone which I started but a week and late was on 1oomg progesterone shot every second day for the other week.

Yes I will look into the DNA fragmentation test.  Can I ask the GP for this or how would we go about having this done?

Sx


----------



## Saffa77

just been to loo and I wiped pink and feeling hot flushes can just feel af is arriving tonight!


----------



## agate

Saffa: I don't think the NHS will offer DNA frag tests. There are several different ones which also makes it confusing and different clinics will use (and prefer) different ones - different clinics disagree on which tests are meaningful. The general meaning of a poor DNA frag result is that it tends to be associated with lower fert rates, lower pg rates and higher mc rates - and is sometimes (not always) associated with alcohol consumption, smoking, exercising too hard (esp cycling), not enough antioxidants in the diet - therefore it can sometimes be improved by changes in lifestyle and diet.

TDL do one type of DNA frag test (your DH would have to go there in person with an appointment though) - but given the distance maybe you should phone round whatever private IVF clinics are near to you and see what tests they offer. Alternatively, if you are thinking of changing clinic (and some aspects of yours haven't sounded great - particularly the issues with fertilisation - although it might not be their fault, I guess) - you could ask the new clinic what DNA frag tests they offer and if you get a good clinic - hopefully they will tailor their Tx not just to the results but also to their experience of dealing with other patients with similar results. I would GUESS that some clinics would have more experience than others in selecting sperm that basically look better under the microscope and are more likely to be genetically viable - but some clinics are supposedly developing other techniques to pick out the best sperm too. The skill of the embryologist in doing ICSI is also a factor in getting a good fertilisation rate.

but at the end of the day the only way to be absolutely sure that the embryo being put back is genetically viable is to find a clinic that does not just the DE that you need, but also PGD/CGH on the embryo - you might not want to go that far though - especially before exhausting other avenues.



Saffa77 said:


> just been to loo and I wiped pink and feeling hot flushes can just feel af is arriving tonight!


speaking from the experience of having full on AF on BFP day (and for ages afterwards) I can honestly say that might not mean anything.


----------



## Saffa77

Thanks agate - yeah will find out from the IVF clinic here how I would go about getting one done..... My dP is very fit and healthy he goes to gym 3 times a week and eats healthily and does not drink or smoke he was even taking some male sperm tablets forgot what they called but you only get them in Australia and NZ - when I think of the name I will let you know.  But they are well knownon these boards.  

yeah will ahve to wait and see about AF but can feel she is around the corner lower back ache too!  You see I dont usually get period cramps she jsut starts and that is what Im feeling now.  Did you have full blown AF on test day?? bet you had thought it was a BFN??

Sx


----------



## Pinpin

Saffa & Dawn   just wanted to say I am   that the BFNs are down to early testing and will both turn out to be BFPs.

Saffa - I hope you find Agate's comments about the spotting you are experiencing right now reassuring and I think it's too early to cut/stop the meds yet    As for AF pains I had them too and REALLY thought it was coming, it felt like it was just round the corner.
I am hoping you will not need a next cycle, if you did I think I remember you decided not to go for LIT in the end so maybe something to consider in the mix of immune Tx as well?

  to both of you Dawn and Saffa we have had exemples of early test BFNs turn into BFPs on OTD! I remember Cath was one of them  

Pinpin x


----------



## agate

I got the BFP (on an early blood test - not a peestick) and then started full bleed.  thought it was early loss/biochem. cramps at that point could mean anything.


----------



## Saffa77

Thanks Pin Pin yeah Dr G had said I could get LIT on a BFP - as mine were 39.6%  but may consider doing it before yet will have to speak to Dr Gorgy.


----------



## Pinpin

BTW Niccad - I wanted to say I'm glad to see that the results of the uterine biopsy are looking good, that will be one less thing to worry about for your next go


----------



## Saffa77

Guess Dr Gorgy is going to be doing LIT in London am I right is it going to be donor LIT too?  when will this be starting maybe I could do it in London sounds like a better plant to me!!! wonder if it will be mighty expensive

Sx


----------



## Ourturn

Dawn - really hoping you have tested too early   With my last pg I only had a VERY faint + with a FR test 14dpo, my levels that day were 23. I lady on the Poor responders thread (also having immune tx) had a very low hcg on her otd and has just seen a hb on a scan. Its not over yet.

Saffa - really hope its too early for you too  .  Agate had given you some fab advice. 8000 euros   I would be peed of to not have any frosties for that price. IF this doesn't work out you should complain. 

Re steroids I would rather wean off by 5mg every two days to be safe.

Niccad - good biopsy result  

Ells - I'd continue with spirulina, its a protein made of seaweed (I think) 

Agate - how are you feeling? Are you steroid free yet? 

Dr G had me on gestone from the day after ec. I took cylogest from the day before ec. I had a day 2 transfer..do you think this wil have been ok? (I take 100mg gestone am, 400mg cyclogest pm) 

Sent our blood to tdl via royal mail special delivery by 9am, but our naughty black lab has chewed the receipt! Need to see if I can tape it together so I can track it  

The embies are 7 days old today and I have been feeling sickie since yesterday. I feel better after eating then within 30 mins (sorry tmi) burp up sick in my mouth..but I'm not actually full on sick. Trying to not to get my hopes up but can't help but dream   Boobs have remained sore & large since trigger shot but I imagine that's the gestone? Think I will have driven myself made by Sunday. OTD is 3rd March but Sunday will be 14 dpo so will do a test then.

Anna x


----------



## bunagirl

Hello ladies 
Saffa/Newday - really hope that things change for you guys over the next day or so.  Keeping everything crossed  .

Pinpin - My little French sister!  What a lovely surprise to see you on Saturday at Dr Gorgy's.  Your little bump looks great and so, so pleased you've made it this far.  Even though it is still such a worrying time what with retests and having to have IVIG.  Here's hoping the next 20 weeks are trouble free for you, DH and your not so little prawn    
Agate i take it your still 'resting up' judging by the amount of posts you manage to post - you really are the Stephen Fry of FF's - you know absolutley everything!!!   
AFM - Went to see Dr G on Saturday for my lining scan and oestrogen levels.  My oestrogen levels came back very good according to Dr G and my lining was 5.7mm, which, considering my period only finished 2 days before and was CD6 I was pretty pleased with that (my best ever was just over 6mm, I put this down to the viagra and progynova).
So the date for my very medicated FET is the 8th March.  I will have IVIG and IL before my FET on the 8th which will be CD22.  Am also taking baby aspirin, progynova, Buserelin, oestrogen patches, viagra, prednisolone, clexane, gestone and progesterone pessaries. 
Along with the usual, folic acid, fish oil, B12, B6.

What I would like to ask you lovely ladies is 1) Has anyone ever had a transfer this late? I'm sure Dr G knows what he's doing just wondered if anyone has had transfer this late with success?
                                                          2) How long should I allow for my IVIG (am 5'5" and about 60 kg's, not sure if this helps) will be traveling down by train so need to know which train to book.

Wishing you all well on this very tough fertility journey.  

P.S.  Saffa - Dr G did say that he hoped to be up and running by the end of March.


----------



## wanabemum

Hi all

Saffa & Dawn- hope you get better news in day or two, fingers and toes crossed for you.

Agate- hope you are ok

Deegirl- did you get LIT sorted out? 

Hi to everyone else, hope you are all ok

Can anyone help me with my immune results please?

TNf a-Il -10                  23.9- hopefully this means no more humira!
IFN -g- Il-10                  5.2(5.8-20.5)


NK assay
50:1                          12.6(10-40)
25:1                            7.9(5-30)
12.5: 1                        4.5(3-20)
IgG conc 12.5 50:1        4.8
IgG conc 12.5 25:1        7.6
IgG conc6.25 50:1          10.6
IgG conc 6.25 25:1          3.6
%CD3                          93.4(50-85)
%cd 19                        1.9(2-12)
%cd 56                        3.0(2-12)
%cd 19+ cells, Cd 5 +      5.3(5-10)


50:1 w Intralipid  7.5
25:1 w intralipid    3.3

flowcytometry negative
T cells IgM 3.2
T cells IgG 7.9
B cells IgM 56
B Cells IgG 41.6

Any help appreciated. I had ivig few weeks ago as part of IVF cycle so this might have reduced my cytokines? Hopefully the fact I had IVIG doesnt mess up the results?


----------



## Ourturn

Wanabe Mum - those results look really good to me   I imagine the ivig would have had a positive effect, but I'm not sure how long the effect of ivig lasts?


----------



## agate

bunagirl said:


> 1) Has anyone ever had a transfer this late? I'm sure Dr G knows what he's doing just wondered if anyone has had transfer this late with success?
> 2) How long should I allow for my IVIG (am 5'5" and about 60 kg's, not sure if this helps) will be traveling down by train so need to know which train to book.


1) don't know - sorry
2) really hard to say - if its your first ivig, he might want to run the first bottle through really slowly (unless he opts to give you antihistamines beforehand). - also the time it takes v much depends on how busy he is/timing of when your bottles need to be changed over vs when he is in between appts. You would probably have 2 x 10mg bottles and 1 5mg bottle. you could guess at maybe an hour each for the large ones and half an hour for the small one but it could vary quite a bit from this.

Wanabemum: your results look good. no problems except maybe the high CD3 (T cells) although they aren't linked to a particular problem and don't normally merit a particular treatment. IVIG is supposed to help lower TNFa and its effects are supposed to last for (very) roughly 4 weeks. If would be good if your B cells IgG were over 50 but they are really close to that, so are proably ok.


----------



## Mrs Shoe

Hi girls

I wonder if you could help me with our test results please. I have an appointment soon with Dr Gorgy but would like to feel as well informed as pos when I go to see him. This is a completely new subject area for me and I’m in awe of your knowledge!

My understanding from Dr Beer’ s book and reading through the posts on this thread are that my TNF is too high so I may need IVIG/IL/Humira(?), my CD19+ cells CD5+ is too high and my B cells should ideally be over 50. Am I on the right track?

TH1:TH2 intracellular cytokine ratios

TNF-a:IL-10 (CD3+CD4+) 40.! *  (13.2 – 30.6)
IFN-g:11 (CD3-CD4+) 13.9    (5.8 – 20.5)

NK Assay (% Killed) Panel

50.1       11.1	  (10 - 40)
25.1 7.9	  (5 - 30)
12.5:1         5.9	  (3 - 20)
IgG conc 12.5 50:1 **	      10.0
IgG conc 12.5 25:1 ** 7.6
IgG conc 6.25 50:1 ** 7.8
IgG conc 6.25 25:1 ** 5.8
% CD3 81.6	  (60 - 85)
% CD19 4.6	  (2 - 12)
% CD56 10.9	  (2 - 12)
% of CD19+ cells CD5+ 13.0 *  (5 - 10)

** > 10% reduction in killing at each effector/target ratio

% of CD19+ cells CD5+ 13.0 *  (5 - 10)

Leukocyte Antibody Detection

Flowcytometry Negative
(T-cells) IgM+ 1.0
(T-cells) IgG+ 2.3
(B-cells) IgM+       18.2
(B-cells) IgG+       39.8

DQ Alpha Genotype

DH	4.1 4.1  0505, 0505
Me	1.1 1.2  0101, 0102

NK assay w / Intralipid

50:1 w / Intralipid 1.5mg/ml	24.6    *
25:1 w / Intralipid 1.5mg/ml	19.3


Any help would be very much appreciated. Thank you.


----------



## agate

yes Mrs Shoe that's right - you are likely to be recommended to have a course of 2 humira shots 2 weeks apart and then a retest 3 weeks later for the TNFa ratio, extra progesterone from EC onwards because of the high CD19+5+ (and maybe ivig or intralipid 7-14 days before EC as well to try and bring down your CD19+5+), and to consider whether you want to have LIT (probably paternal blood) before you cycle to try and raise your IgG B cells LAD over 50 (although over 30 isn't so bad already).


----------



## wanabemum

Thanks very much sobroody and agate. Maybe the ivig helped my cytokines or a delayed reaction to the humira, although last humira was in October/November.
Delighted they have reduced so much. Do I respond better to IVIG/Intralipids do you know? I think its ivig?

Still waiting on rest of results but its good to have some of them back. Thanks for all your help.

Good luck mrs shoe too, sorry I cant be of any help.
X


----------



## agate

wanabemum - your NK activity response is a bit mixed - there doesn't seem to be a clear winner between IVIG and ILs for you - IVIG looks best at the highest concentration, but its less clear at lower concentrations. ILs PROBABLY don't help with other classes of cells e.g., CD19+5+ as much as IVIG.  I expect Dr G is likely to say a mixture of both IVIG and ILs would be the best thing to try at the start of cycling and then to see how things go on BFP retests.


----------



## Saffa77

So had the pink slight show yesterday then cramps and today feel absolutely normal!  Stomach has shrunk, lower back ache gone and feel normal!  AAAARgh must be the gestone.  This is too much of a mind game.  Thought I was coming on last night?

Sx


----------



## agate

Saffa: have you got a pg blood test booked?  how long do you have to wait?


----------



## Saffa77

tomorrow at the Gp at 2.15pm only time they had - should I still go??  Can one feel totally normal?


----------



## agate

of course you should still go, Saffa. 
most ladies have no symptoms at this point in pg. most non-ivf ladies wouldn't even be thinking about pg at this point. 
you will find loads of diaries on these sites with ladies who have been absolutely convinced they are not pg at this point only to go onto announce their bfp in a few days - the hcg levels at this point are so tiny, that, almost always, any symptoms could be just explained by wishful thinking in hindsight or symptoms that could be due to meds etc and are not meaningful

you need to go so that if the test is positive you can start making arrangements with Dr G for your drip - so you can get the prescription lined up and talk to him about whether you should have the drip asap or whether you can afford to wait until a 2nd blood test - which depends on things like: whether you have any spotting/bleeding, what your NK results have been like in the past, how long since your last drip, how high your blood hcg is, etc


----------



## Saffa77

Yes you right Agate.

I had the Intralipids drip 7 days exactly before my ET.  So yeah ok will go tomorrow and see what the outcome is.

Will let you know.  Thank you for always being there to answer all my questions you truely are a star!

Sx


----------



## Mrs Shoe

Hi Agate

Thanks so much for your reply. It's reassuring to know I'm beginning to understand some of these immunology issues. You are an incredible source of information! Thank you.

Thanks for your note too Wanebemum.

Mrs Shoe


----------



## Zeka

Agate, thanks so much for answering my questions over the last couple of days on the Lit thread. 
Zeka x


----------



## Ourturn

Saffa -


----------



## Newday

Tested tis morning day 8 negtaive clinic says it's too early! well I knew they would say that. AF is due today so we will see if she arrives have to pick up more steroids and clexane today £78 could do with knowing so I don't waste money!
Dawn


----------



## Saffa77

newday    its horrible isnt it!!! are you going to give it another go after this?  Does Dr Gorgy know already.  Last time my af took over a week to arrive its frustrating!

I feel your pain x

Sx


----------



## Zeka

Newday - hoping its just a bit early for you x


----------



## mag108

Saffa    hope its good news for you

Newday    It does seem a little early, fingers crossed for you ! 

Just been to the GP, I had an epic 9 points to bring up with her including getting her to agree to prescribing Clexane and Prednislone ! Hurray. Had to skip yoga tonight to go see her so she had to 'be worth it'. Going to do some stretching now. Eat well, take supplements but havent quite ticked the excercise box this year and it's sooooooo cold out! and snowing again!

PS Anyone know of a way of getting HIV HEPA&C done (gp doesnt do it) and our local Sexual Health clinic will do them but WONT give results! I need to update our results for forthcoming IVF

XXX


----------



## agate

that's odd - gp's surgeries are normally able to send those bloods off to the local hospital - it is normal for GUM clinics to refuse to give a copy of the results - even though that seems stupid to me.  other than that, you are looking at private hospitals, private path labs like TDL.... or wouldn't your IVF clinic do it for you when you do your down reg scan/down reg bloods? - I THINK they only need to get the results in before EC day to cover themselves - am sure my clinic were always happy to wait to do them on down reg scan day.

ps I think you probably want HepB not HepA?


----------



## Ourturn

Newday - praying its still too early.    

Mag - great news re getting those drugs from the gp! 

Sicky feeling has gone today. But at 8 dpo its was probably down to nerves as opposed to early ms   Thing is I know have had really early sicky sypmtoms with some of my past pgs...but then the one that lasted to 7 weeks and my hcg was 20,000+ I had none...so I know I need to stop torturing myself. 
Driving myself   Work is not distracting me...going home soon.
Anna x


----------



## ells

Hi Ladies,

Saffa hun dont give up         .  Like the ladies have said it is very early to expect to have symptoms, IVF just puts more pressure on us to expect symptoms.  In a 'normal' pg most women woudnt know for several weeks that they are pg so I wouldnt stress about having or not having symptoms.  Easier said then done I know but keep positive.  I really   that you get good news from your blood test tomorrow. 

Newday, sweetie    I think Agate has already said but the HCG will be too low to register on HPT.  Keep up with the matra ' Im a pregnant, this is working, I am pregnant, this is working'.  Sending you big     .

Sobroody, its sooooooo stressful with all this waiting   .  I really hope that you get your longed for and deserved BFP     .  I am not looking forward to my 2ww - I think I will be tearing my hair out!! 

Sending all the PUPO ladies lots of                           

Mags,   glad that the appointment was worth cancelling your yoga class for!  That px will save you some pennies!

Agate sweetie, how are you feeling?

Zeka, how are you doing?

Hi Mrs Shoe - welcome to the thread   .  The ladies on here are just great.  Agate is our honorary immune doc   she's brill!

Hi to everyone else, hope you are all keeping warm.

AFM I got the call from PA's sec yesterday offering me an slot on 12th March which will be too late so I rang her today to say that i couldnt do it unless she managed to get a cancellation for the week before as it will be too close to ET.  She was actually quite nice - for a change!  I also got the call  from the clinic to say I can start stims.   .  I do my first one tonight and then carryon doing all the jabs in the morning.  I will be phoning Dr G tomorrow morning to try and get in for my IVIg and get a px for IL as I just cant go to London 4 times next week and get all my scans and blood tests it will kill me   .  It feels like its coming around so quickly.  

Right off to pack up and go home.    to everyone that needs them.

Ells


----------



## Zeka

Saffa, Sobroody, Newday - really feel for you ladies going through 2ww.   ....who's gone back to work and who is resting up? This year will probably be the first time I try to cycle whilst working so I'm interested in what everyone gets up to! ....Channel Four and Five on Demand helped me through last time watching things like Misfits and True Blood back to back!  

Hi Ells, congrats on starting stimms! Good luck with all the jabbing  

Zeka x


----------



## Newday

I'm getting af pains strong now she's on her way!
Dawn


----------



## Bilberry

Hi Girls,
Hope you don't mind me joining this thread. 

Just got my results from Dr Gorgy and had a phone consult with him last week, looks like I need LIT as me and DH have a partial DQ alpha match ( 4.1) and my LAD is low ....B cells are only 12%. Just put my name down with Dr G for this tx.  Also need IVIG, Intralipids, clexane, gestone and steroids. 

I had some immune tests done last year and it looks like my 50:1 have increased, not sure what has caused this to happen. It's only when I got off the phone to Dr G that I thought of questions I'd wanted to ask him, so hoping some of you girls might be able to help.

Below are my results from Dr Gorgy, most of my NKC’s have increased ( my 50:1  was 22.5 last year and my CD19 CD5 was 26.7) except for the CD 56 which has gone down ( was 17 last yr). My TH1:TH2 was normal last year ..TNF Alpha was 29 and IFN –g was 14.2 so this wasn’t repeated.

Breakdown of my results are as follows:

50:1    31.3%  
25:1    24.6%  
12.5:1  16.5%  

IgG 12.5  50:1  26.6%    
IgG 12.5  25:1  19.1%    
IgG 6.25 50:1    28.5%    
IgG 6.25  25:1  16.5%  

50:1 Intralipids  17.7
25:1 Intralipids 15.7  

% CD3  80.1 
%CD19  6.5  
% CD 56  10.9  
% CD 19+ CD 5  32.3  

CD 57 uNKC – not elevated

I’ve been taking high doses of eskimo oils for the past few weeks and I was on them 6 weeks when I had the tests done with Dr G. I’ve also been taking Bromelain, ginger and  Vit D3 to help with lowering my NKC’s

Could the fish oils have increased my NKC’s (I thought fish oils would improve them?) Or are they helping reduce my CD 56?
Any reasons why my 50:1 may have increased? Could  our failed cycle (with immune tx) last Nov have caused this?
What does the 50:1 actually mean? My CD 56 are normal now however my CD19 CD5 are up, does the 50:1 represent the CD 19 CD5 cells?
I’m putting on loads of weight on the fish oils should I just give them up or is it worth sticking with them?
Can CD 57 cells be affected by fish oils? 
I'm also worried that neither IVIG or Intralipids reduce my 50:1 to below 15 ....feel so frustrated as I'm trying my best to help reduce my immune system and it seems to be getting worse, feel like I'm fighting a losing battle! 

Sorry for the long post girls

Saffa, Newday and sobroody, hope your are all doing ok , keeping fingers and toes crossed for ye.

xxx


----------



## agate

Bilberry said:


> Could the fish oils have increased my NKC's (I thought fish oils would improve them?) Or are they helping reduce my CD 56?
> Any reasons why my 50:1 may have increased? Could our failed cycle (with immune tx) last Nov have caused this?
> What does the 50:1 actually mean? My CD 56 are normal now however my CD19 CD5 are up, does the 50:1 represent the CD 19 CD5 cells?
> I'm putting on loads of weight on the fish oils should I just give them up or is it worth sticking with them?
> Can CD 57 cells be affected by fish oils?
> I'm also worried that neither IVIG or Intralipids reduce my 50:1 to below 15 ....feel so frustrated as I'm trying my best to help reduce my immune system and it seems to be getting worse, feel like I'm fighting a losing battle!


Bilberry: ok... I'll have a go - remember I am layperson not a doctor though!

In immunology different types of cells are identified by what patterns of proteins are expressed on the surface of the cell. So CD57+s happen to be activated uterine natural killer cells, CD56+s are NK cells in the blood and CD19+5+s are B cells (antibody making cells) which tend to be associated with making autoimmune antibodies e.g., antihormonal antibodies. The + just means that the cells have a given marker (as opposed to not having it).

When you look at your NK Assay results from chicago, first you see measurements of how much killing power your NK (CD56) cells have. The test is done by mixing different dilutions of white cells from your blood with a solution of specimen target cells and incubating them in the lab for 2 hours. Then an analysis is performed to see what percentage of target cells have been killed off.

So the results which say 50:1 have the highest concentration of your white cells to target cells, 25:1 contains less of your white cells (so the % killed is lower) and so on.

The next bit of the test is the same again at 2 dilutions but with the addition of a solution of IVIG to see how much the IVIG suppresses the killing power of your NKs.

In your list, the same test, but with 2 dilutions of intralipids is shown next (but its normally on a different page in the chicago tests).

The next thing is a list of the percentage of different white cells that can be identified in your blood (so its a measure of the number of these cells in your blood, as opposed to how active they are).

CD3 cells are T cells - they are often elevated if there is a problem but there isn't a specific tx for them (except IVIG).

CD19 are B cells (the ones that make antibodies) - again, they can be elevated if there is an immune issue but there isn't a tx for them except IVIG.

As I've said, CD56 is a measure of the number of NK cells you have in the blood - its less of a problem if they are high if their killing power (measured in the assay further up the page) is low. Some docs say there is no point measuring them because the only thing that matters is how much killing power they have.

As I mentioned, CD19+5+ are a class of B cells (CD19+ cells) which are associated with autoimmune antibody production e.g, anti hormonal antibodies.

So to answer your questions. The 50:1 is nothing to do with CD19+5+ cells.

Fish oils are not supposed to increase NKactivity or NK number if taking for a short time - the evidence is not so clear if you take them long term. I'm a bit surprised to hear you are putting on weight taking them - although for this sort of alternative tx to work, you need to also reduce your intake of saturated fats (so no cakes, biscuits, butter, pastry, sausages, chocolate etc - you also need plenty of fruit and veg to get your antioxidants -some of these e.g,. the ACE inhibitors in pomegranate juice and the lycopene in cooked tomatoes have antiinflammatory properties). When your blood is loaded with saturated fats your NKs will become more active (one of the signs of this is increased TNFa but NKs are not the only cells that make TNFa). By contrast, if your blood is loaded with 'good fats', the signalling that activates NKs is supressed so your NK killing power should drop (that's how intralipids are supposed to work).

It might not be safe to continue with high dose fish oils once you start taking clexane (they thin the blood too)- a lower dose might be ok but you should probably check with Dr G.

Lots of things could have increased your NKs since last time - and remember you are only measuring them at one off points in time. NK killing power goes up and down all the time depending on what bugs you are dealing with, what you are eating, how stressed you are etc, fluctuations in autoimmune activity, inflammatory conditions e.g., endometriosis and infections and also the kind of immune sensitisation from failed implantations of DQa matching embryos. So there are really two many things to guess at as to why your NKs have risen, I THINK.

I know nothing about the effects of bromelain or ginger but I THINK vit D is a good one to take (so long as you take it in a high enough dose - you need at least 25mcg per day).

Your IL assay results look pretty promising IMHO. These tests are only a rough estimate of what would happen in your body (as opposed to in a small sample in the lab), but at the LOWER dilution they got pretty close to 15% killing power. So it does suggest that IL should be effective for you for reducing your NK killing power.

I would GUESS that Dr G wants you on gestone (high dose) because of your high CD19+5+ cell levels (in case these cells are producing antiprogesterone antibodies). He wants you on ILs to suppress your NK killing power and IVIG to do the same but also to reduce your CD19+5+ cells and steroids also for the NK activity.

I can't comment on the clexane because I don't know the dosage or your inherited/acquired thrombophilia results but basically, Dr G prefers all his patients to take some clexane and the more severe your thrombophilia results the higher the dose you need.

I hope some of this helps.

Dawn: I hope you are wrong and its just early pg cramps.

Ells: am mainly ok but struggling with the MS to keep enough calories and protein down (I'm not dehydrated though - am fine drinking water and milk - just when I eat more than a couple of ryvita I just chuck it up again), and I am stressing myself out big time on horrible non TTC stuff that's weighing on my mind and won't go away...also because I am so frightened of coming off the cyclogest/gestone and going back on the clexane - it doesn't matter how many times I tell myself that its logically fine to do it, I just keep thinking about all the blood a few weeks ago and am terrified it will happen again... but Dr G says its time I came off the progs and went back on the clex so I MUST do it. I am such a coward. So basically there is nothing wrong, but I am getting myself in a state anyway! I think I am going to get by blood prog run (post to TDL)- I am sure I don't need it - even Dr B said it was safe to stop prog at 16 weeks but maybe if I saw the level in black and white I wouldn't be so scared and I might start believing its ok.


----------



## lalaby123

hi girls just dipping in quickly

Bilberry - what dose of fish oils are you taking? you shouldn't really take more than 5ml a day if in liquid form - if taking normal dose it shouldn't really affect your NK activity - I think NK activity goes up and down throughout our life, just during this pregnancy mine has been yoyoing so I wouldn't worry that its gone up the fact is it is higher than it should be so needs to come down and looks like intralipid works well for you lucky girl ;-)

Saffa, sobroody,newday - sending you lots of         i am very behind with the thread and not uptodate with others news

Ells good luck with your stimms

Im 18 weeks now, both babies fine and hematoma wasn't found in last scan so yeepeee and as a result feeling more positive and starting to believe in the pregnancy....bump is huge for the time and i have put on 10 kg gone from being skinny to very curvy  DH is liking the boobs in particular 

have i missed any BFPs


----------



## agate

that's great lalaby!

you haven't missed any BFPs yet - but we are hoping for some asap.

they couldn't find my hematoma on the last scan either, so like you, that was a big relief.

gosh 10kg - I have a serious bump but my weight isn't going up (but that's probably the puking and the complete inactivity) - but then I only have a singleton not twins!


----------



## Bilberry

Agate, you are a font of knowledge, you know more about this than my gp and some consultants I've met in the past. Thank you so much for taking the time to respond to me in so much detail. That's interesting how the food we eat can affect the immune system. I did a blood test (IgG) last year for food intolerances and my IgG was raised for loads of food types. At the time I was told I had leaky gut and to go off the foods for 12 weeks. There were so many foods I had to eliminate that I lost nearly 2 stone in 12 weeks so had to stop. I now limit my intake of dairy and eggs but that's about it . Yeast was also high but I found it impossible to eliminate yeast from my diet....it's in everything!

Lalaby, I'm taking 5g of EPA which is about 7 spoonfuls a day of eskimo oil! I read on the yahoo forums that 5g is good for reducing NK activity so I've been taking that dose for 9 weeks now.

xxx


----------



## lalaby123

Bilberry - I honestly think you are overdosing on fish oil. Have you checked this dosage with any medical professional? It is an anti-coagulant after all and you don't want to take too much of it. 
Also re your food intolerances, I too did the York test a year ago and found I was intolerant to yeast and dairy mainly. I then did another test (bio-resonance) which gave me much more detailed info of what i was intolerant too. I too had leaky gut as a result of gut dysbiosis (too much bad bacteria (yeast) vs good bacteria). I strictly avoided my intolerances and supplemented with high quality good bacteria and all my long standing ailments disappeared. I am sure if you are intolerant to foods and you continue to eat them this causes an inflammatory reaction in the body which we don't want. So if your yeast intolerance was high I suggest you do try and cut down on yeast containing foods and take some high quality (more than 10 BILLION) probiotics. 

Agate - so pleased your hematoma has gone too - phewww what a relief  

I had forgotten to bookmark this new thread so have fallen very behind!


----------



## Newday

Saffa god luck you get your results today don't you?

Well after all the bad af cramps last night I expected to see blood this morning but there isn't any. Still testing negative day 9
Dawn


----------



## ells

Good luck Saffa     .

Dawn   .  Keep     .

Lalaby great news on the haematoma.   .  Glad to hear that you are now enjoying your pregnancy.  Sneding bump rubs your way   .

Agate, massive     to you hunni.  It must be such a nerve racking time coming off some of the meds.  I am sure the clexane will be fine hun, you have to trust in your body now, it has got you this far.  You will also be able to have your regular scans which will help reassure you.  I hope the TTC stuff settles down so that you dont have to worry about it   .  The stress if IVF is enough for a life time supply let alone anything else!  Keep relaxing and taking it easy hunni.   

Hi to everyone else, hope you are all well.

Ells


----------



## agate

lalaby123 said:


> Bilberry - I honestly think you are overdosing on fish oil. Have you checked this dosage with any medical professional? It is an anti-coagulant after all and you don't want to take too much of it.
> Also re your food intolerances, I too did the York test a year ago and found I was intolerant to yeast and dairy mainly. I then did another test (bio-resonance) which gave me much more detailed info of what i was intolerant too. I too had leaky gut as a result of gut dysbiosis (too much bad bacteria (yeast) vs good bacteria). I strictly avoided my intolerances and supplemented with high quality good bacteria and all my long standing ailments disappeared. I am sure if you are intolerant to foods and you continue to eat them this causes an inflammatory reaction in the body which we don't want. So if your yeast intolerance was high I suggest you do try and cut down on yeast containing foods and take some high quality (more than 10 BILLION) probiotics.


I had a quick look at the stuff on yahoo groups about fish oil doses. It seems that Dr B's clinic recommend smaller doses (1-2g) and the Dr who promotes taking the high dose (5g), Dr Sears, seems to be promoting his own brand of fish oil which makes me a bit suspicious of his claims - but I honestly don't know anything about him. In my quick look I can't find any proper studies that try to prove what dose is optimal for NKa reduction. I'm pretty cautious all round, so I'd probably echo what lalaby says about checking this high dose out some more - or reducing it down to something more conservative?

Regarding food intolerances: anything that causes irritation and inflammation e.g., in the gut, would potentially increase NKactivation, so if you can avoid food that you know irritate your body you would be more likely to drop your NKa and TNFa. Yeast is in a lot of foods, but the highest doses by far are in beer and bread (inc pizza etc)- so if you could avoid those, you'd be on your way to removing yeast from your diet. Avoiding yeast is trickier if you tend to buy lunch/sandwiches out each day, but much easier if you can make your own lunch because it gives you more options like salads based on rice, quinoa, beans etc


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## Saffa77

ladies my head is swimming.........

Did a pee test today a boots one and I got a  

OH MY GOSH!!! dont know what to think now!!!  having a blood test this afternoon but should only get results tomorrow.  Should I believe this test I am in such shock!!!!!!

Cant even concentrate at work!


----------



## Bling1975

Saffa - that's wonderful news. I got tears in my eyes when I saw it. I am so happy for you! Congratulations!


----------



## Ourturn

Saffa - CONGRATULATIONS! You are pregnant, you cannot get false positives! 
Was it a boots test you did 2 days ago? If so that would explain the negative as they are not very sensitive. Have you called Dr G?

Anna x


----------



## ells

Whooooo hoooooooo Saffa                      .  Congratulations hunni you are PREGNANT!

Ells


----------



## Cozy

Saffa,

 on your    

I know you will worry about it, but try and relax and enjoy

Cozy


----------



## Newday

Saffa

congratulations!!!!! What day was this past transfer? was it a 5 day transfer?

Dawn


----------



## lalaby123

Saffa!!!        on your       that is wonderful news i am sooooooo pleased for you. It looks like i have timed my reappearance on the thread right just in time for good news! hopefully there will be more good news from Newday and sobroody soon. Remember to take things very easy. xxx


----------



## agate

Saffa - congratulations!!

if you get a peestick positive, today's blood test will also be positive - because a peestick needs a pretty high value to register - depending on the brand, something like 25-50 iu.  You need to call Dr G and decide whether to wait until you do another blood test in 48 hours or whether you need your drip before that.   its wed today (I think) so your second test would be friday - but then I guess you wouldn't get your 2nd result until at least monday - so if you wait for that to get your drip organised it will be into next week - so you need to talk to Dr G - don't forget to mention to him that you had spotting yest - it will be a factor in how soon you need a drip - and if it comes back you might need to discuss upping the prog.  Ideally you want your 2nd blood test to show a rise of at least 66% from the first one.   If you have to get an answer faster, then most private path labs should be able to get you same day blood results (4 hours).

set out what you have to do step by step in case you are too flustered. 

Do I get a gold star for my lectures to you yesterday? 

this is really excellent news.

continue to treat yourself with kidgloves and keep up your healthy eating/drinking plenty of fluid - its REALLY important not to get dehydrated in early pg.


----------



## Saffa77

thanks ladies!!!!!

Yes head is definately buzzing.  I am 13 days past 3dt.  The clinic had told me to test today.  Had the transfer on the 11th of February.

I am going for a blood test this pm at 2.15 but only getting the results back Thursday.  I will phone Dr Gorgy tomorrow once I get the results and if I need another intralipids am sure I can get them to come on Saturday as I had asked the nurse last time and they do come saturday.

I didnt have spotting yesterday I had the pink show only when I wiped two days ago then nothing after that.

Do you just call Dr Gorgy does he call you back or do you just leave a message with secretary telling him results??  how soon after your first intralipids do you need the second one I had the first intralipids on the 4th of February which was exactly 7 days before ET.  I thought Intralipids last 4 weeks meaning i still have about a week to sort it out?

S


----------



## agate

you'd probably want to ask him to call you - so he can get your file out and advise you properly.  yes it will probably cost you a consulting fee (unless he has nothing really to say yet) - but you need to get things sorted.

[email protected] will do saturdays but they do need some notice - they have to get the drugs sent out to the nurse and they won't do this until you get the prescription to them and you pay for it (it does cost extra on saturdays as well but I don't know how much).

yes, ILs are supposed to last about a week - but its really best to talk to Dr G - just in case. he will have your chicago results and be best placed to advise you - if your levels are pretty good, then there probably wouldn't be any urgency, but maybe if there are issues, he might advise you to get on and have the drip asap.  It also might be better to get the prescription sorted out and provisional arrangements made with [email protected] rather than leaving it - in case it takes longer than you think to get organised with [email protected] 

You'll also want additional prescriptions from him for continuing your meds up to your first scan (unless you've got this covered already) and make arrangements to have your NKs (and maybe your LAD) retested on the appropriate day after your drip - assuming that's what he thinks you need.

And there's your first scan to arrange at 6.5 weeks (ish) - about 2 and a half weeks time (you add on 14 days to EC date - to calculate how 'officially' pg you are).

gosh I make it sound like all drudgery and things to do, don't I? but I expect you will be all flustered and muddled. 

do try and enjoy it too!


----------



## Cozy

Saffa,

what Dr G told me to do, was to have an IVIg/Intralipds infusion the week I got a BFP then to have another one when I had a confirmed heartbeat on a scan 2 weeks later. Which is what I did.

I have been having them 4 weekly since.

He may tell you to do the same thing, or he may advise something different.

Phone Dr Gorgy and ask to speak to him. If he is not available tell Akvill your news and ask her to tell Dr G and ask him to call you back. He will then tell you what to do and send the necessary prescription to HCAH, if that is who you will be using.

Shame you have to wait until tomorrow for your blood results. Have you booked a 2nd appt?

Cozy


----------



## niccad

Saffa....       That's such great news. I am so happy for you... YIPPEEEEEE!! 

Dawn & Sobroody -    for both of you x


----------



## Saffa77

ladies no have only booked the one blood test when should I book the other one for then?  Friday??

Should I wait for the blood result then phone Gorgy or just phone him anyways?  Like you say to get ball rolling with Intralipids

My NK were in the normal range think they were 10 it was only my cd19+5 which was a bit high and my LAD was 39%.  so yeah maybe he will say to have Intralipids within this week.


----------



## MissyMinx

Saffa                        

Congratulations!!!! 

Dawn and Sobroody - keeping everything crossed - sending you   and  

Sorry no more time for posts, but sending lots of  to all the F&G ladies.

Em.x


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## Saffa77

Phoned Dr Gorgy and have left a message telling them I did a Pee test and will do my bloods this afternoon and she said she will let me know and will phone me back to let me know what do to next.

Sx


----------



## agate

yes, saffa, book the next test for friday and try to get it at about the same time of day as the first test (makes the maths easier - but not essential) - you'll be wanting the result to go up by at least around 66%, preferably.

I would say phone him... but then I am always wanting to err on the side of caution and I don't know how much hassle it will be to get your drip sorted, or how urgent it is in your case.  odds are it will be fine to wait, but I wouldn't want to take any chances, personally.


----------



## Saffa77

thanks Agate!  What would a good first result be anything over 50?

Sx


----------



## agate

there isn't really a sensible answer to that, saffa. 

assuming you are 15 dpo then successful pregnancies have had HCG results reported varying from 2 iu to 2088 iu - early hcg results vary hugely between ladies - although studies have shown that ivf pregnancies on average have a lower early hcg result for the same dpo as non ivf pregnancies.  what matters more is to see that the level goes up by at least about 66% in 48 hours.  If you can't get the tests done 48 hours apart and have to go with a different spacing between tests there are online calculators you can use to calculate whether its equivalent to that sort of rise in 48 hours (unless you good at maths - then you could do it yourself).

my first beta was closer to 25, but it was at 12 dpo


----------



## Louiseb26

Saffa -   Lovely.Thats fantastic news...well done.

     

Fingers crossed for more   I new this year was a lucky one  

Hi to everyone  

Lou xx


----------



## niccad

I had my monster day of appointments yesterday…. So so tiring. I still have an NHS funded cycle so went to see them to find out dates etc. It was a total disaster. Forget that I can’t cycle until June, but they (bearing in mind it was a nurse I saw) are completely against all NK stuff (even though the consultant I saw before told me he would be fine for me to go on steroids and clexane), no interest in PGD or polar body biopsies (even if we pay the extra, and even though they use the lab at the Bridge and it’s the Bridge who recommended I go down this path), and they won’t change their protocol. I know I should use this go.. it’s free.. but in my heart of hearts I already believe that it won’t work and I’ll have yet another negative, 5 months will have passed and my AMH will be even lower. 

We then saw ARGC and Dr Gorgy … (Agate – he said my LAD was border line but should be fine if I cycle again soon, and also confirmed what you said about my uterine biopsy – all good). Now just have to decide between the two… ARGC seemingly are moving away from prescribing such high doses of prednisolone and instead start with dex..something and will then give a max of 10mg of pred.. They seemed really concerned about over suppressing immunes and how this can also stop implantation. They also use humira far more than I realized. If I go with them I will have to have my immunes done again and have a hysteroscopy…. Um… Dr G suggested that DH do DNA fragmentation and aneuploidy of sperm – so he’s doing that tomorrow. Both ARGC and DrG are more against polar body biopsy.. and I’d already got my head around this thinking it was a great idea. I just hate that each clinic has such different ideas over what I should do. Now we just have to make some decisions. Have any of you done ARGC and DrG?? Would love to hear from someone who’s experienced both…. I love DrG but I’m not sure about LWC, and then I look at the success rates at the ARGC and get swayed…. 

Wow - that's a long post... apologies... it was a long day...

Ells - guess stimming has started.. How are you doing? 
Agate - thank you so much for all you advice. 
Lalaby - so glad that the bump is growing nicely. Can't believe so much time has passed already!!

Love to all x


----------



## Saffa77

niccad sorry cant help you there.  I also hate it how each clinic/doctor has different views

Is it normal to have headaches on BFP?  been having this headache for the last 3 days its bearable but can constantly feel it here...

Sx


----------



## Ourturn

Niccad - tough decisions. NHS clinics do tend to be nurse led. With this tx I only saw a doctor on the days of ec and et. 

Re success rates what you could really do with knowing is what success rates Argc and DrG have with immune cases. Not sure if you can find this out? Re dex I think that's another form of steroid? What is the total combined dose of dex and pred..20mg? I know Dr Quenby in liverpool only prescribes steroids from a bfp or from et as she belives it can inbit implantation too. But I think Beer would not agree. I would now be nervous on taking steroids later. 

Saffa - your headahses could be down to tension and or dehydration. make sure you drink lots of water.

Hi everyone

Anna x


----------



## Bling1975

I have now had my phone consult with Dr G. And it was pretty much what you all told me. I need Humira (x2) and LIT(x2) to start with and he recommended paternal. 

Now I have to find someone in Sweden that can take the TB test. The downside of all NHS and no private alternatives is that it is hard to find somewhere to do testing for things they don't believe in even if you offer to pay for the test.

Apparently it has been really hard to get hold of Dr T in Athens lately so I hope Dr G will get his LIT treatment up and running soon. He didn't promote it at all but I asked.

All our IVF clinics close in july and august so I am a bit torn about how to proceed with the time management. I wish I lived in London.


----------



## niccad

Anna - thanks for your message. ARGC are really up on immunes and chicago test absolutely every patient as part of their protocol. Not sure how many of them actually end up needing treatment though. I was told they give 1mg of the dex thing prior to EC and generally a max of 10mg of pred after. They also don't do intralipids which is a bit annoying, but I guess I could sneak to DrG for that if i cycle with them. I guess Dr Taranisi collaborated with Dr Beer when he was in London and that ideas on immune treatment will keep progressing... I think I'm leaning towards ARGC, but perhaps that's because I've had 2 cycles with immunes from DrG and it's not worked...   Decisions decisions.... 

Saffa - no ideas on the headaches I'm afraid... 

x


----------



## Saffa77

ladies just been for my beta eeeeeek hope it brings good news tomorrow.  Booked another beta for Friday.  

Dr G phoned me back and he said to see him tomorrow.... Im like i cant im in Scotland... so he is like make a phone consult tomorrow and will go through all my notes.  Told him I had had a Intralipids 7 days past ET so he is like ok good and will go over all notes tomorrow.  Thinking im not desperate for intralipids then.  Dont know what he is going to say abou the LIT? my lad was 40%  hope i dont have to go to Athens!!!!  

I am still taking my utrogestan (same as cyclogest) at night so jab am and 4oomg at night.  If we have the high cd19+5 and we dont absorb the cyclogest then what is the point in taking them or is it because your body does absorb just not enough as gestone and its just a back up?

Sx


----------



## agate

Saffa - if your CD19+5+ is high, you are more likely to have anti-progesterone antibodies - that means that the progesterone you do get into your bloodstream is more likely to me destroyed/made ineffective more quickly than for other ladies. That's why you need to take in more, consistently, to make sure there isn't a shortfall/sudden drop that triggers a bleed - don't change anything for the time being.

Niccad: 1mg of dexamethasone is equivalent to about 7mg of prednisolone.
Some doctors think that dexamethasone is more likely to help ovarian stimm/egg quality than prednisolone.   I can't help much with your dilemma - but it does seem that NHS clinics usually seem to be stubbonly opposed to any kind of Tx that they don't do - which you can sort of understand as its a bit like saying that the Tx that they give is not good enough - and also they get nervous because its not clear who is in charge if you are getting consults and advice elsewhere.   Can you do your NHS cycle, get immune tx from Dr G, and just not tell them anything you don't need to?  Or could you do a private cycle with one of the other clinics you are thinking about and then still get your NHS cycle if it doesn't work?  It seems a shame to waste something you are entitled to?  Although its v stressful having Tx at an NHS clinic and immunes with Dr G (although it did get me (and lalaby) pg).

Really can't help you with your dilemma of ARGC vs Dr G - I am really bad at making decisions these days myself, but I guess for the best prospect you need to 'buy into' the Tx that your doc recommends so you feel right about it.  Regarding the lower dose of steroids - it makes some sort of vague sense to me - only if you are expecting to rely on having plenty of IVIG/ILs instead though - because those, particularly IVIG, are more likely to 'normalise' your immune system - whereas steroids have much more complicated effects.   Other than that, I really don't know... and I don't know enough about any of the PGD techniques.  good luck for the sperm genetics.


----------



## Saffa77

Thanks Agate - when does the body start producing some progesterone too?  

Sonia


----------



## agate

it should have started already - the placenta produces it - but the amounts will be small initally and increase as the placenta gets bigger - ladies who have a non IVF pg will produce more because they will have an ex-follicle in the ovary called the corpus luteum that makes it until the placenta can take over - if you have normal ivf then the follicles are damaged when the eggs are aspirated so there isn't enough prog.  If you have DE, then you don't have any ex-follicles to do the job either.  you will need to stay on the prog meds until at least 12 weeks (particularly if there is a CD19+5+ issue) - Dr B said you should stay on it for at least 16 weeks though.  hopefully your NHS doc will give you a maternity exemption certificate when you show her the pic from your first scan.  then if she is happy to prescribe your meds (including progs), you will get them free on the NHS - all NHS prescriptions are free when you are confirmed as pg - you also get some NHS dental procedures free if you need them whilst pg e.g., checkups.


----------



## Saffa77

Thanks!  am so worried tho something will be wrong like ectopic or miscarriage cos of my history (severe endometriosis)      am feeling so hot and flustered on my face today and slight headache like I did yesterday am drinking heaps!!!!!

Sx


----------



## agate

hot and headaches is probably due to progesterone.  it should raise your body temp by 1 deg ish - which can make you feel hot/flushed/sweaty/a bit generally under the weather.  try not to take anything for the headaches (only paracetamol if you have to).  drink lots of water, diluted juice (pomegranate is good) and milk and increase your fibre intake.  you might find the longer you are on it for the less bread and pasta you can eat without feeling really bloated and uncomfortable (which in a few weeks time will make morning sickness worse) and the more fruit (including dried fruit), veg and bran type stuff you have to eat instead to avoid feeling yuk.


----------



## Ourturn

Agate - I am feeling hot and sweaty and for the past 3 mornings have woken up with a sweaty pj top   I have been thinking and worrying this is down to the gonapeptyl (down regging shot) I had..but do you think its more likely to be the progesterone at this stage?
Anna x


----------



## agate

it will probably be due to prog not DR drugs at this point - DR drugs normally cause sweats due to absence of prog/estrogen but having been through stimms and now being on gestone your hormones will be pretty high.  so it should be a prog side effect. 

if you had been checking your basal temp (waking up temp) every day you would have seen it jump by 1 deg-ish when you got to EC and started taking prog supps.  

on natural cycles some ladies chart their BBT and see it jump up once when they ov (initial release of prog), and then jump/climb higher when they get implantation (further increase in prog).  it doesn't really work to chart your temp when you do IVF because the progesterone supplements raise your temp too much to see the natural trends (and your body doesn't produce the ov surge of prog anyway because your follicles were mucked about with to get the eggs out).


----------



## agate

Saffa77 said:


> am so worried tho something will be wrong like ectopic or miscarriage cos of my history (severe endometriosis)


I think for us ladies that have 'hard won' pregnancies, the worrying never really stops. when you are doing ivf you worry that it won't work, then on 2ww that it hasn't worked, then waiting for 1st scan that its ectopic/biochem, then you worry about 12 week scan and nuchals, then 20 week scan and anomalies and so on and so on - and every time you have cramps or blood you worry about mc. I don't really have any good strategies for not worrying - but maybe someone else will? The really good bits are when you see the baby on the scan at each stage. That's the few minutes that all the worry goes away.


----------



## bunagirl

Hi Ladies, still at work so just a quick one to say 'CONGRATULATIONS SAFFA'!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
     
Much love Bunagirl. XXXXX


----------



## Ourturn

Hi Agate - yes my temp has gone up from 36.4 to 36.6/7. Which is excactly what happens during my natural cycles. That's reassuring...it being progesterone. Thing is I have never had these sweats during my previous natural cycles. Hope this just means that the gestone/cyclogest combo is being effective.
Thanks again wise one!  
Anna x


----------



## Peanuts

Saffa - congrats on your fab news hun, sopleased for you.       I hope you can get stuff sorted with DrG and can try to enjoy things over the coming days and weeks  

Sobroody & Newday - keeping fingers and toes crossed for you girls     

Had LIT yesterday and have a puffy, itchy arm!  Trying not to scratch!

Big hugs to everyone  
Dxx


----------



## Saffa77

thanks all am getting like dull pulling feeling on my right side hope this is ok feels like my ovary or something!! am t hinking maybe its ectopic as that is the side my tube sits on as only have 1 tube and ovary AAAAAAAAAARgh overthinking it all need to relax.  Is it normal to have only pain on one side?

S


----------



## Zeka

Massive congrats Saffa. Such fab news!!!

Zeka x


----------



## agate

I've had pains on my right hand side all along - I've felt nothing at all on my left.  I think its normal. If it starts to really hurt - sharp stabbing pains, or you get a fever or get really sick, or pain in where your shoulder joins your arm, I think that's when you would need to worry about ectopic pg (the right course of action in that case would be to get medical help asap).


----------



## mag108

Saffa! So so happy for you hun!
Agate is right it is all worry, but maybe taking each day at a time and trying to trust ones body again
xxxx


----------



## Clarabelle34

Hi all, I hope you don't mind me joining your group. I am just about to finish our 3rd cycle of IVF at the Lister and I suspect that it is going to be a BFN despite thyroxine, 75mg aspirin and 25mg prednisolone (after being tested for immunes). So to have a follow up plan, we have an appointment with Dr Gorgy on Tuesday to get the full Chicago tests done.

Is there any advise you lovely ladies could give me?
We have one frozen emby at the Lister, a nice 5AB (we had a 5AA and a 5AB put back last Wed) and I don't see the point in having it back if there are still implantation issues.

Has anyone used the immunes treatments during a natural cycle with any success? What about during FET?
I am such a loss at the moment as I was SO confident that we all the weaponry we needed this time and so any words of advice would be so so appreciated.

Saffa, we haven't met but congrats. I am so so happy for you. 
Many thanks,
Clare


----------



## agate

Cath34 and Choice4 are both pg at the moment after fet with immune tx from Dr G.


----------



## Newday

Well I am now convinced it's ove negative again this morning day 10 so embies 15 days old.

This is the end of the road for me
Dawn


----------



## ells

Dawn hunni     dont give up sweetie      .

Ells


----------



## lalaby123

Dawn why Has AF showed up proper? 

Niccad if u go nhs route just don't involve them with dr g's plans instead take his prescriptions to your Gp and ask to convert to nhs presc mine did it 
If u go private I know Diane has cycled at both argc and dr g sadly neither worked but she can tell u the differences, other than the fact that argc will only want to treat u with ivig I think they don't give the ivig early enough if I remember correctly ..if I was in your shoes I would do ivf with lister and immunes with dr g

saffa as agate says the worrying never stops specially first 12 weeks I was only happy for one day and then was hit by all sorts of worries after that but I can say that things get better after 12 weeks and after u com off all the drugs ..when worrying too much remind yourself of the half full cup the fact that u r pregnant for now and that is a huge positive step forward good luck with hcg results today 

Agate hadnt time flown by? Can't believe u r 17 weeks and me 19! I am now worrying time is running out on me! I've started prenatal yoga and aquanatal to help my stiff back n hips 

Sobroody when is your test day?? 

Clare I think combining lister with dr g is a good plan forward u will get the best of both clinics that way but let's hope this cycle will work for u why u giving up hope already??
Hi to all else


----------



## Clarabelle34

Lalaby123, congrats on being PG. That is such wonderful news. Thank you also for taking the time to reply to my post. I was pleased to see that you reccommend cycling at the Lister and treatment with Dr G. Tomorrow is test day for me but I started my usual spotting yesterday and I tested this am and nothing! So I suspect very very strongly that it hasn't worked.

I am just so heartbroken after having such amazing embies put back and taking all that medication. I just don't know really where to turn next other of course than Dr G. But then I get really worried that his tests are going to throw up loads of other problems which mean more treatment, more raised hopes and pssibly still no happy pregnancy to walk away with. Sorry, am now just rambling.

Dawn, my thoughts are with you sweetie and I hope you are ok.
Clare xx


----------



## Ourturn

Dawn - I hope you're wrong honey   

Clare - I hope its not over for you either   If this does not work the chicago tests will show whether you need LIT, Humira, clexane, gestone, IVIG & or intralipids on top of what you've been taking.

Lalaby - otd is wednesday, but I will test monday as I will be 14dpo. Determined not to test any earlier than that even though I have a stash of fr tests. 

Did anyone else have really bad skin during the 2ww? Presuming its the progesterone. Have loads of hard little spots under my skin on my chin and even some on my cheeks (were I never get them). Had a horrid dream last night. A doc was trying to give me a gyny exam and I was crying and screaming the place down!  

Anna x


----------



## ells

Morning ladies,

Clare I am sure that when you see Dr G and he gives you his opinion you will feel much happier.  I am sure the other ladies here will tell you too, he is a lovely man and is very caring and sympathetic.  I know I felt better having seen him and getting some answers.  From what I have heard and read the Lister is great and has some good results but I know a few people on here have seen Dr G for immunes whilst cycling with them.  Good luck with your decision.  I really do hope that you get good news tomorrow as anything can happen   .

Lalaby, 19 weeks wow that really has flown by.  I hope the yoga and aquanatal helps.  I bet your bump is nice and round and growing well.  How are you feeling?

Agate, hunni how are you today?

Sobroody, my skin gets quite spotty during the 2ww and I get hairs too   !  I hope that yours are due to your hormones kicking out lots of HCG!   

Dawn hunni thinking of you     .

Saffa how are you feeling this morning, I bet you must still be on   .

How is everyone else, hope you are all well?  Are the Athens ladies back yet??  I hope you all had a good time and a safe trip home.

I have a stupid question, does it matter what time of day I take clexane?  I wanted to take it at night so that I didnt have to do all my jabs at once.  Also, can anyone recommend a good flavour solgar protein shake?  Thank you ladies.  I hope you all have a good day.

Ells


----------



## Saffa77

Ladies

quick one just back from GP and she said my results were not in yet but were in the lab and she said im pregnant and my levels were in the 1000 whatever that means!!! can anyone help?
She said to have more done tomorrow.  Am so nervous
Sx


----------



## agate

Saffa: there is a chart of HCG levels for different days of early pg here
http://www.betabase.info/showBasicChart.php?type=Single

there is another chart of HCG levels for twin pgs on the same site.

High values sometimes mean twins but values vary widely even for ladies with singles so a high value often doesn't mean twins.

The most important thing is to get a good rise between that test and the next one.

Ells: I've tried honey nut and vanilla and both are ok - vanilla is a bit less sweet because honey nut has real honey in it. It doesn't really matter what time of day you take your clexane - but if you have to have your clotting tested for any reason (because of problems with the clexane), then the clotting test has to be done within 1-2 hours of taking your clexane - so it would have to be taken in the morning for that - and its not ideal to switch what time of day you take it. I used to take mine at night - then I wanted to take it in the morning in case I needed a clotting test - have settled for lunchtime.

MAJOR NEWS for everyone: Omni has had a healthy baby girl!!! thanks Dr G.

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----------



## ells

Congratulations to Omni thats is fantastic news!       .  We hope to see some piccy's when you are ready!!!!


Thanks Agate   , I will try those out.  I will stab away in the morning then just to be on the safe side.  Please pass on my best wishes to Omni if you get a chance to speak to her.

Is anyone going to be at Dr G's on Monday?  I am going in for my first IVIg at 12.  

Ells


----------



## Saffa77

my progesterone levels came back as 79.6nmol do you think this is ok?


----------



## agate

Saffa: right... well you need to convert nmol/ml to ng/ml so you can look it up - unless you can find tables in nmol/ml.

The conversion factor is 3.18 so I think you divide your figure by 3.18 (you multiply ng/ml by 3.18 to get nmol/ml, so it should be the converse).

79.6/3.18 = 25 ng/ml (I THINK - I am not good at maths at the moment).

Then you can look it up here http://www.fertilityplus.org/faq/hormonelevels.html#progesterone

and here

http://www.repro-med.net/repro-med-site2/index.php?option=com_content&view=article&id=25rogesterone-levels-during-pregnancy&catid=2ages-ett&Itemid=33

(looks ok to me - but you should check my maths!)

After OMNI'S NEWS, it should be Choice4 next, then Cath34, then Pinpin, then Lalaby and so on.....

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----------



## Saffa77

Thanks ladies ok problem number 100..... LOL spoke to Dr Gorgy who had another patient so couldnt really speak and when I told him levels he is like wow that is good and seems like twins!!! EEEEK exciting!  (*but calm down*)he said my progesterone was fine and to keep with the gestone one day and  3 x utrogestan the other day!  Cool.

Problem is now he wants me to have a drip (intralipids asap)  so i said dont think [email protected] can help me tomorrow so called them and they could MAYBE help me on sat (extra £150) or at the earliest on Tuesday eeeeek what am i going to do! 

do you think Tuesday is too late.  I ask Dr G if Saturday is ok and he was like yeah that is fine.

How soon after BFP did you ladies get your intralipids IVIG?

Sx


----------



## niccad

Dawn -        I'm so so so sorry that it hasn't worked. We're all here to support you .... I know that you had convince DH to do this one and I can't begin to imagine what you're going through. I know you think it's over but I'm still busy praying for a miracle...                
xxx

Ells - DrG told me to change mine to the morning (so I had to move them by 2 hours every day until I got to the am). Think it was purely so that if there was any an issue he could do the clotting test. How is the stimming going?? Good luck with the IVIG on Monday. It look ~5 hours to do mine so take a good book with you xxx

Welcome Clarabelle. I think it's a great idea to do the Lister and Dr G. I would have gone to the Lister but it's really inconvenient for me which is a shame. You say you 'suspect' it's a negative... When is your OTD? I hope your suspicions are wrong xx

Omni - YIPPEE!!!!!! Can't wait to see some pics. Pray that we're all not far behind... 

Saffa - not sure about the progesterone levels i'm afraid... 

Sobroody - Not too long to go now. I've heard that the progesterone can give you bad skin. Those hard bumps are horrid aren't they. I'm having a massive breakout at the moment too, but think it's as I'm fasting so am guessing it's just a load of toxins trying to escape... I'm suddenly aware of where the sun is so it doesn't shine across my face... 

lalaby - 19 weeks already!!! Thanks for the advice about the Lister & ARGC. Lister doesn't work for me unfortunately & I guess that now I've done 2 cycles with immune support from DrG I might try something else... 

Hi to peanuts, bunagirl, zeka, guru agate, pin pin and everyone else
xxx


----------



## agate

Saffa77 said:


> How soon after BFP did you ladies get your intralipids IVIG?


I had IL on 16 dpo/dpEC, then IVIG 2&1/2 weeks later when I had the first scan. If it was me I'd pay the extra and get it done sat, cos if anything went wrong I'd never forgive myself (unless a flight to Dr G for sat am is cheaper?).

Dawn: if you are testing with peesticks, its still possible that the cycle has worked for you. Early levels can be very low - too low to see on sticks - and yet a healthy baby can still result. Studies have shown that IVF ladies often show lower levels of HCG than non IVF ladies, particularly if the transfer is from a day 5 blast rather than a day 2-3. If you want to be sure, you need to get your blood level done. I hope you are wrong about this cycle, and if not that your DH will let you try again - if that's what you want, in time.


----------



## Saffa77

ladies problem solved spoke to Dr gory faxed script through to [email protected] and getting drip tomorrow hopefully.

Nurse said she could come tomorrow or Saturday.

Lets hope thats true.

Sonia


----------



## ells

Niccard, thanks hunni   I will be doing in the morning, just to be on the safe side.  5 hours   for IVIg - I hope it doesnt take that long my DH will be sooooooo bored.  I got my px for IL's from Dr G today so waiting for [email protected] to ring me back.  Stims are going well, I havent had any twinges yet.  I am on low dose of gonal f so I am not expecting much to happen yet.  I normally stim for a couple of days longer to what the clinics think.  I am   that all these vits and supps make the difference and I have less empty folliies this time and get some nice juicey eggies and that all this immune tx will result in a successful outcome.  
How are you feeling?

Dawn sending           vibes to your embies to start kicking out some more HCG for you hunni.  

Saffa hope you get it all sorted out.

Ells


----------



## Ourturn

Omni - CONGRATULATIONS!!!!!       

Saffa - great news on sorting the drip and congrats on the fab hcg! 

Dawn - still hoping for you    

Niccad - Monday feels like a life time away..might need to get dh to hide the FR pee sticks. 

Els - I take my celexane in the morning because I take aspirin in the evenings. With my 1st ivig I had [email protected] She arrived at 2pm and left before 6pm.

Agate - your 20 week scan will be here before you know it. Are you going to find out the sex?
Anna x


----------



## Toffee Girl

Hello Ladies!

Sorry long time no post and all that, but just thought I would say a quick hello to everyone!  

So nice to hear of so many ladies making progress, and lovely to hear Omni's news.   .

Ells - I didn't read right to the end of the previous page but I know Dr Gorgy thinks taking the Clexane in the morning is better if you can as I remember asking him that a while ago.  I think it's better from a sleep point of view.

Clarabelle  - I just wanted to say that I went to the Lister after 4 unsuccessful cycles at Holly House.  They do go someway down the immunes route but just not all the way - 25 mg of prednisolone and IVIg as I understand it.  I decided not to stay with them when I presented them with a problem (a womb lining that looks like a strawberry) and they were not prepared to help me establish what could be the cause once we knew it was not an infection.  I then found Dr Gorgy.  With Dr Gorgy I have since done 1 IVF, 1 IUI and another ICSI this week.  He subcontracts in to whichever centre you agree on together.  We have done the last two procedures at London Women's Clinic and the first at London Fertility Centre.  This is at least another option to consider if you feel that you might be coming to the end of the road at the Lister.   The London Women's Clinic is the nicer of the two, and I think a little nicer than the feeling I got at the Lister.  The brilliant thing about going with Dr Gorgy direct is that he speaks to you on his mobile each evening regarding your blood results and you can ring him on the mobile anytime if you are unsure about anything.  

At the very least if you get the Chicago tests done you will know where you stand.  The worst case scenario is that your LAD levels may be low and that may involve the hassle of LIT.  Equally, you might find that you have something else that is easily medicated for (MTHFR etc), so don't feel that you are opening up a huge can of worms. 

I have to say I tried to get Dr G to test me for absolutely everything in the book but in the end we compromised  - as IVIg, steroids and clexane deal with a multitude of sins and cover the majority of disorders.  

Everyone - I am terribly sorry but I have not had the time to read through everyone's posts since I last popped up, so am not sure what info had been shared recently.  I have found it interesting this cycle that as I have a consistently high TNF-a (over the last year it has gone from 39 pre-humira to 56 post humira and 53 post second lot of humira) Dr Gorgy decided on 2 lots of intrallipids for me and only 1 IVIg.  He took a long time to decide to do more intrallipids than IVIg but when I quizzed him on it he said that there is some evidence coming through that intrallipids might be more effective for the stubbornly high TNF-a cases.  Worth knowing - we will see!  

Oh and just before I sign off - thought you all might like to hear of my terrible trauma on Tuesday which was ET day for us at the London Women's Clinic..... I had taken the time to arrange the pre and post transfer acupuncture at the Zita West Clinic (reputed to increase success rates of IVF from 26% to 48%), and had done my pre transfer session.  I got to the London Women's Clinic (the people are all really lovely there), and found that we actually had 3 viable embies (first time for us to get that far since we started the immune stuff a year ago).  I stayed all nice and relaxed through the ET (and you know how it is with the full bladder...), and just as Dr Gorgy is waiting for the little treasures to finish floating out of the pipette thing, the fire alarm goes off.  We ignored it for a minute but then everyone decided we would have to evacuate - so pipette and speculum were whipped out pronto and I was dragged off the table and had to walk up the stairs and out of the building before being unceremoniously dumped in a wheelchair and wheeled across to another building.  Apart from being freezing and  mucho humiliating as I am sure I bared my backside more than once - I have to say that I found it all rather distressing (horrid negative thoughts of embies dropping out all over Harley Street)!  

Dr Gorgy was a dear and everyone tried their best to console me, but they all knew it was far from ideal.  Still they eventually went back in and checked the pipette and there were no embies left apparently.

So after I got dressed etc and the nurses had stopped apologising, I managed to get myself back over to the Zita West Clinic and thankfully the acupuncturist and Zita herself worked hard to minimise the trauma.  Zita was fab and I was so glad I went back there.  I am not sure what the moral of the story is  - take nothing for granted and you won't be disappointed!!??  Book in with Zita West coz they are worth every penny??  Anyway, after a day of sleeping it off yesterday, I am feeling normal again now and have decided to just move on from most of my negative thoughts about fire alarms!!

Anyway, hopefully I am the one in a million that this has happened to!

Much love and take care

Toffee Girl xx


----------



## Saffa77

ladies my face feels hot!!! my cheeks are so red is this normal   feel flushed!  

Soniax


----------



## Saffa77

also when i spoke to Gorgy today he asked me everything I was on and then if I had LIT and im like no and he is like thats ok and didnt tell me I need to have it done so PHEW.  My levels were borderline though and am thinking the intralipids is sorting this out well the NK activity out a bit?

Sx


----------



## agate

Saffa77 said:


> ladies my face feels hot!!! my cheeks are so red is this normal  feel flushed!
> 
> Soniax


get a thermometer and take your temp. find out if you are just a bit hot or if you have a real fever. if you are just hot its fine - just hormones. if you have a high fever -get medical advice locally just in case.

noone can tell you for sure whether you would benefit from lit -its always an unknown. you can't know whether your borderline levels are really a problem or whether the effect of having it on your nks etc would be worth it. dr g won't be able to tell you whether you should or shouldn't have it - but i am sure he will talk it through with you if you want to - but in the end you have to just make your own decision and get on and have it or don't. if you have your drips and nk retests though fairly soon at least you can take corrective action - more drips - if you do get an nk surge.


----------



## Diane72

Good Evening All,

Saffa, congratulations. Agree with Agate on the hot flushes.

Toffee Girl, Gosh what a nightmare, poor you, I can't imagine how distressed I would be if I had that huge fire alarm trauma. Sending you lots of  

Sobroody, how are you feeling? sending you lots of fairydust  

Ells, good luck with the stimming, grow follies, grow

Omni, congratulations    

Agate, hope all is going well with you, thinking of you

Clarabelle, I do know how you feel, it seems like such an undending list of 'other possibilities' that just lead to disappoinment. But maybe, just maybe, we'll find the winning formula this time.

Niccad, as Lalaby said I have experience of Mr. G. and ARGC but haven't done a full cycle with Mr. G. yet (but I am next). I did 3 cycles with ARGC, 1 at Herts & Essex and my most recent one at CARE Nottingham (because of the CGH) but with Mr. G. supporting. ARGC are not as comprehensive as Mr. G. on the immune front, don't do intralipids and as Lalaby said they were not doing immune treatment on Day 6 of stimulation (intralipids or IVIG) which many clinics here and in the US now seem to think is important. The other disadvantage is you don't see the same doctor each visit. What ARGC are good at is getting a good crop of eggs and I do think their intensive blood monitoring and daily dose adjustments of drug help this. Also I think they are good at EC, which I wasn't so convinced CARE was as good as it should have been at. I weighed up all the options and have decided to do everything with Dr. Gorgy this time including CGH of the embies at LWC (with a little help from Greece on the side for LIT (Dr. Tsagaris) and other testing (Penny at Serum)).

Lalaby, lovely to hear you are 19 weeks and it is going well  

Hello to all my Greek LIT buddies-I'm still tired and can't wait until the weekend for a good sleep!!! Hope everyone got home OK! 

Hugs to everyone else  

As for me, well Penny at Serum in Greece did uncover I have an infection in the womb and alot of scar tissue as a consequence. So they have cleaned it out with a hysteroscopy and we have a months's worth of antibiotics to take before re-testing. It may also be the infection that has been causing my DH's sperm DNA fragmentation issues. I need to talk to Mr. Gorgy as its probably not wise to take my 2nd injection of humira while fighting an infection. More drugs-I really think at this rate I should be guaranteed no redundancy for at least a year in the pharma industry as I feel like I'm re-investing most of my wages and more back into the industry anyway!

Diane x


----------



## mag108

ladies just bobbed on quickly to say hi. What a fab bunch of women. On my way out tonight so not much time...

Am a bit burnt out to be honest. Way too busy for too long. TX plus immunes is soooo much to manage, even before I officially 'start'. Also all my old habit like drinking coffee etc creep back when I am busy and stressed....
Chatted with my GP re time off sick and she is happy to sign me off. Have had enough of being stressed and its not going to change any time soon.I said I didnt want 'stress' on the note, she said how about 'gynae issues' or 'gynae investiagtions', not happy about them either. I basically dont want central personnel knowing anything (it's become apparent that they use temps and one of them now works for my section!)...any creative types/thoughts on what I could put which is suitable vague but sounds sick enough to be off for 2 mths?
XXXX


----------



## Cath34

Wow Onmi huge congrats to you. I have been thinking it must be anytime soon.      I am so pleased for you.

Choice you should be next I think?

Agate how are you doing?

Saffa - wow great levels, def worth getting excited about, it could be twins!!!!!!

Toffee - well what a mare!!! poor you, but you never know this could really be the one, fingers crossed for you hun.

Hi to everyone else.


----------



## Angels4Me

hi all

can anyone tell me whether is ok to take spirollina whilst pg? i have been taking for tnf but think i read here that should be continued if pg

thanks
angels


----------



## Seven

Hi,  just wondered if anyone knew what Dr Gorgy charges for Intralipids infusion and how long it takes?

Thanks

K


----------



## agate

4angels: I've carried on taking spirulina whilst pg. 

Seven: He charges £350.  It takes less time than an IVIG - about an hour or an an hour and a half maybe.  but it does vary a lot because he sets up the drip in between consult patients so it depends when his gaps between patients fall.  If its your first drip it might also take a bit longer if he wants to run it through more slowly to see how you get on.  He'd probably want to give you an initial consult to go through your history which would be £120 but it would give you the opportunity to talk through any tests that you might have missed in the past that might be worth doing - although of course, if you decide you do want tests run, there would be charges for them.  If you live a long way from his clinic, he's usually happy to give you a prescription to have Intralipids with healthcare at home if its appropriate.  They charge £285 for ILs including the nurses fee.

Cath: good to hear you are ok.

Mag: can't help with your sick note dilemma. In the end, what matters is getting pg, not your job though! 

Diane: I really hope that that is the info that you need to make everything work!


----------



## Ourturn

Toffee - OMG what a mare! CONGRATS on being PUPO!          

Mag - hmmm. Don't put stress on the note. In your shoes I would say gyny issues...it could be an infection of anything.

Diane - good that you know and were able to get the scaring cleared up. With the anti-b's this may do the trick!    

Evening all 
Anna x


----------



## lalaby123

Saffa - sounds like twins to me??!! I was also flushed 

Toffee girl god owes u this cycle to work after your hilarious but I'm sure traumatic firealarm ordeal good luck on the 2ww

sobroody I got covered in acne on my neck chest and back at end of 2ww and lasting till now! I believe it's the hormones 

Diane glad u hav uncovered something new hoping this next go will be the one for you 

Els hope those follies r growing nicely 

Omni many many congrats what wonderful news


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## Newday

Well I think I can safely say this is over negatove again day 11 embies 16 days old this was my last go ever. Have to move on and get some kind of life
Dawn


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## Diane72

Dawn,

I'm so sorry to hear that     I know you have said you have decided to move on, but if you did want to investigate a bit more then Penny at Serum in Greece (look under the Greece board on ff) has discovered stuff that no-one in the UK has. One of my ff friends had 8 cycles, mostly BFNs and a few early m/cs and Penny turned it around for her, she is now at the late stages of pregnancy. Mr. Gorgy knows of Penny and I think he may even be able to arrange some of the tests she does if you'd rather go through him.

Hugs to everyone else, catch up later but better get ready for work now.....

Diane x


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## Ourturn

Dawn - sending you huge


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## lalaby123

Dawn       I am sorry for the negative test 
I don't want to giv u false hopes but unless AF has arrived it still could be too early my first pregnancy I only tested positive 18 dpo ... Which stix r u using 25 iu or 50 iu if 50 then I would say there is still a chance ..... Otherwise I hav also heard great things about this Penny! XXXXXXX


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## berry55

Dawn    thinking of you xxxxx


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## Saffa77

dawn   like others have said AF is still not here so there may be some hope still.  

Ladies I have headaches everyday should i worry.  It sits on top of my eyes and goes down my neck a bit like a tension headache have upped my water consumption?!


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## Newday

Thanks for kind words af hasn't turned up bu I just know I have done this too many times now.
There will be no more txc this has to be the end for us
Dawn


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## MissyMinx

Oh Dawn, I'm so sorry         Thinking of you. xx


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## Ourturn

Dawn - I'm so sorry


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## ells

Dawn hunni I am soooo sorry to here that its negative       .  I really do     for you that it does change and the hormones havent kicked in fully yet.  Sending you lots of      .

Diane, sounds like you have got some answers from Penny.  I   that this 'fixes' it for you and you have a sucessful pg on your next clycle.  I think we can all help prevent redundancies in the pharm industry!!   .  Glad you had a safe trip back from Athens.

Toffee, what a nightmare   I think you are brilliant not to be stressed out about it all.  Blimey!   Congrats on being PUPO sending you lots of sticky vibes and          and      .  This is the one hun!!!

Mag's, can you put down anxiety / 'surgery' or post op recovery?  Technically EC is surgery as they are 'going in'!!   .  I work in HR and I wouldnt question post op and anxiety too much and wouldnt really need to start investigating until 3months off.  I hope that helps hunni.

Saffa, I believe the headaches are caused by the increased hormones running through your veins and should settle after a couple of days once your body has adjusted to the hormones but I think Agate and Lalaby have said that if you are worried then you should speak to your GP.

Lalaby, hello hunni, when is your next scan?

Agate hun, I hope you are well and not stressed with the non TTC stuff.   

Sobroody, sweetie how are you feeling today?  I hope the spots are not too bad - the things we ladies have to put up with   .     

Pinpin, Cath, Cozy how are you all I hope that you have nice bumps and are feeling well.

Bling, Peanuts, SarahH, Deegirl, Shellie, Berry, Missyminx, Zeka, Blue Primrose, Niccard, Nix, Louise, Thumbelina and everyone else, hope you are all well   .

AFM, still not had any twinges but I am sure that thats a good thing as hopefully my follies are just waking up and growning nice and evenly.  I am only on 150 of gonal f so a low dose, first scan is next Wednesday.  I have paid for my IL for Wednesday just waiting for the nurse to ring me and let me know what time she can do, I hope it will be early evening as I really cant have more time off from work - we are moving offices so its a bit of a nightmare trying to organise everything etc -and we have lots of men and we all know that they dont always have the best organisational skills      .  My crohns had a blip for a few days and it had me a little   but it seems to have settled down again now so hopefully it was just one of those things - I think it might be all the drugs and the increase in my immuno supps but hopefully no more probs   .  I have my acu session this morning so I will mention it to my lady as she usually helps it. 

Hope everyone has a good day,

   to everyone who needs them.
Ells


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## Angels4Me

Hi Dawn

sending you


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## Cath34

Dawn - Im so so sorry for you.


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## Cozy

Dawn,

so sorry it has not worked out for you   

Cozy


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## Newday

I am very very hot all the time sweating will this be the utogesten?
Dawn


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## Louiseb26

Dawn 

I'm so sorry lovely.I want to say things could change...but you know your own body   

Lou xx


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## Saffa77

Hi ladies

Just had my drip! PHEW stress over and my order of gestone has arrived too.  Also had my repeat bloods at the Nurse today   they doubling!

How is all else?  Agate you very quiet today?! Hope all is wellx

Sx


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## lalaby123

Dawn it cud b utrogestan or it cud b from pregnancy I pray it's the latter

saffa what was your hcg level and how many days past EC r u? 

Els grow follies grow grow 

I went shopping today it's great that so much of fashion is loose long tops so I don't hav to buy frumpy maternitywear my boobs hav gone from 32c to 36d woohoo dh v pleased never mind the extra 10 kg on my bottom!


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## Saffa77

Lalaby123 - i was 13 days past 3 day transfer and they were above 1000 did more bloods today  hoping they doubling!!!


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## Skybreeze

CLICK HERE for your new home


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