# Fertility & Gynaecology Acadamy (Amin Gorgy) : Part 6



## Skybreeze (Apr 25, 2007)

*New Home Ladies*
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## niccad (Apr 28, 2009)

just book marking 
Hi everyone x


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## Cozy (Jul 17, 2008)

me too


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## Pinpin (Nov 4, 2008)

hi girls 

bookmarking also!

Coming to the end of the 2ww... now waiting either way... Dr G doing HCG blood tomorrow at the TDL next door... that's if no AF by then but been feeling some AF cramping for 3 days now and my (.Y.) much smaller than just after EC so AF may turn up any minute. Appart from that no symptoms whatsoever if a little on the constipated side - sorry TMI.
I am absolutely not tempted to do a home pg test as i can't face looking at a -ive on a peestick but DH wants me to do one before going up for bloods tomorrow... I can't see as far as that tomorrow seems like a million years away TBH and feel like my world will fall appart...

How are you doing Diane?

Pinpin x


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## Maarias (May 4, 2005)

Hello ladis,
Just popping in to wish Pinpin good luck for the beta tomorrow.
I would say if you decide to do a test make sure it's something very sensitive like first response. I had a very  low beta on my first blood test which hardly showed up on the hpt.
Good luck
Mariax


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## Han72 (Feb 15, 2007)

Pinpin -         hon it's normal that your (.Y.) would go down after EC, don't forget the trigger jab will have affected them and as that wears off they're bound to shrink a bit. Cramps don't mean a thing either hon so please please please try not to think it's all over - it can't be, I haven't sung yet!  I understand you not wanting to test early but if DH does persuade you then pls make sure you get First Response Early Result test, not those flash looking ClearBlue digi ones. They look great with all that about conception dates and all but they're just not as sensitive.  It gave me a -ive on the day my HCG was 22!

Take care hon    

Love to all!
xxx

Ah and Maarias has pipped me to the post there! Hi hon


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## Ourturn (Oct 8, 2008)

Pinpin - good luck


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## Diane72 (Oct 29, 2007)

Hello Pinpin, 

Good luck for tomorrow.    

The HCG blood test will be the best measure as you are doing it at the earliest time possible (Day 14 post EC), only do the HPT in the morning if you are strong enough to take a negative with a pich of salt (and as others said Early Response is much more sensitive than Clearblue). I have had one time where it was negative until Day 14 post EC on the HPT and only showed another line on Day 15 post EC, so the blood test is the most definitive that early on.

I will have my hcg test Day 15 post EC (Saturday), slightly later than yours as mine was a Day 3 rather than Day 5 transfer and also I wanted to do it the same day as I have done my other rounds so I could compare the figure.

I have to confess I did do a test this morning and nothing showed but I am fully aware it means absolutely nothing until closer to my test date-I am so wasteful once I get those Early Response tests into my grips!  

Diane x


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## Sprinkles (Nov 6, 2008)

Hey ladies

Pinpin wanted to wish you every luck in the world for tomorrow.

Diane hang in there you've got quite a few more days yet until OTD    

Went to see DrG this morning and got the low down on what to do for this cycle and am off to MFS tomorrow to go through their plan so will post properly tomorrow, am shattered and just got back.  However, word of warning for anyone wanting to do the LAD retest.......

Take your DH with you!!!!! I didn't and apparently they take both your blood still even though you could have had donor LIT, so I didn't get to do my retest today but not to worry came away with lots of tubes from TDL to do here and send down.  Oh dear you gotta laugh eh!


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## Diane72 (Oct 29, 2007)

Sprinkles,

Thanks for the tip. I definitely would not have brought DH for a LAD re-test as I presume your DQ Alpha doesn't change over time and the LAD test was just for the female-bizarre- did he say why?

Yours slowly going  

Diane


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## FJ (Aug 9, 2008)

Hi sorry to butt in but I have made an appointment with Dr G for the week after next. I have had two failed ICSI Cycles, we have unexplained infertility. Just wondered if anyone has any advice on what to ask Dr G etc. We wil not be able to have a cycle with Dr G I don't think because we live too far away I just want his advice on Immunology problems and the tests. The NHS clinic I have had the two cycles with does not beleive in immunology problems. Many Thanks


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## Sprinkles (Nov 6, 2008)

Hey Diane

He said they they use it to benchmark your levels against or something like that, dont know why as havent even had DH LIT had donor, and would wonder if males can have LAD levels anyway if they are to do with pg    I dont know it was all very confusing but DrG said thats what they need to do the test so needs must and all that.  Got tubes to do it with gp at home and then send down which didnt really want to do after last times escapade with TNF test, (which I got my money back from royal mail by the way), so will give it another shot.

Keep going girl x


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## mag108 (Jun 28, 2008)

Pinpin: good luck for tomorrow, its all so excruciating. Sending you lots of strenght to deal with whatever the outcome is.


Not much to say today. Feel a little out of sorts with the world, like I really NEED to be ALONE. Met an old friend I had previously fallen out with today for lunch with her new baby. He was cute and it was ok. She seemed to be glad to meet, personally it matters not to me. I am all consumed by all things IF related and not much time for out else....

Started my yoga class again and feel better for it. Told one of my sisters last night just HOW expensive tx and immune tx may well be...dropping in the idea as I may need to borrow money next year (on the back of my parents house selling at some pt).......


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## ells (Mar 19, 2008)

Evening ladies,

Pinpin sending you lots of            for tomorrow.  Dont give up hunni.  

Cath, that sounds like good progress, seeing the midwife and getting an early scan.  Glad to here that you still have 'symptoms'  hopefully the ms will slow down soon.

Sprinkles, I hope that its not too traumatic with the bloods.  Does sound odd that you have to have DH's blood too   .

Diane, hi hunni, how are you feeling?

Lalaby, how are you?  Glad to hear that you are still on for this cycle.  How are you feeling?

Nix, your posts do make me giggle!  How are you doing?

Omni, havent heard from you for a while sweetie.  Hope you are okay and that your bump is growing nice and big now.

How is everyone else?

Well I feel better at last   . Still have 5 more days of antibiotics, doc thinks I may have a a kidney stone   .  Have to go and have a scan when we get back from Poland.  My mum's op was postponed to next wednesday as they didnt have any intensive care beds due to all the swine flu patients.  We are all quite relieved as we wouldnt have wanted her to get swine flu.  The bad bit is that we will be away when she has the op   .  I am sure she will be fine but just cant help but worry as its a big op.  Anyway girlies, I am going sign off.  Thinking of you all   .

Ells


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## siheilwli (Jan 18, 2006)

Very quick post (from work!) to keep my place in the thread.

I'll be doing Short Protocol hopefully in a few weeks, on BCP at the moment until we start TX. I'm a bit annoyed with myself, Mr Gorgy kindly wrote me a list of all the blood test I and DH needed before we start (including the LIT ones), and I went and flippin lost it....
know it was AMH, chlamydia, karyotyping... any ideas what else I might have needed!   Think I'll have to go in and ask for another list  
Cat


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## Peanuts (Apr 29, 2007)

Hi girls

Sorry I've been AWOL and will take a while to catch up with you all. Took a long weekend home to visit my folks - really needed the break.

I finally got my results back from DrG and have been trying to interpret them using DrBeers book , but could do with some help if you don't mind.

NK Assay:
50:1 13.4
25:1 6.1	
12:5:1 4.8

IgG conc 12.5 50:1 13.3
IgG conc 12.5 25:1 11.8
IgG conc 6.25 50:1 9.6	
IgG conc 6.25 25:1 9.3

%CD3 83.0
%CD19 9.1
%CD56 11.1
% of CD19+cells,CD5+	14.3

NK Assay with Intralipids:
50:1 w/intralis 1.5mg/ml	10.4
25:1 w/intralis 1.5mg/ml	7.6

LAD	Negative
[T-cells] IgM+ 34.8
[T-cells] IgG+ 1.0
[B-cells] IgM+ 17.6
[B-cells] IgG+ 3.5

TH1:TH2 intracellular cytokine ratios
TNF 34.8
IFN 9.1

DQ Alpha
Me - 0201:0302
DH - 0101:0201

So far I've figured out that Intralipids work better for me (phew as at least that's cheaper!)
And I'll need Humira for TNF results and LIT for low LAD - will it be donor due to DQ Alpha match?
Any thing I've missed?
Still getting my head arond things so any help would be great.

Thanks you and big hugs to all 
Dawnxx


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## Seven (Nov 30, 2004)

Hi Ladies,

Hope you dont mind me posting here,  Im a newie with Mr Gorgy and found him via reading posts on here!

Wondered if anyone has tried a natural cycle with immune treatment with Mr Gorgy.  Think we have done with IVF after 8 attempts but 2 months running have managed a bfp naturally although only chemical.... s*ds law isnt 5.5 years trying, not a natural BFP in site!

Dont think im upto any more ivf but thinking of trying a natural just incase.

Any help greatfully received.

Thanks

Seven


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## Cozy (Jul 17, 2008)

Sprinkles,

This is what I got from Rosalind Franklin about the LAD retesting.

In order to complete the Leukocyte Antibody Detection we would need 3- 10ml viles of blood from your husband and 1 red top tube from you. This test can not be performed without your husbands blood.

Dr G did tell me I had to bring DH with me, but he didn't say why

Cozy


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## Peanuts (Apr 29, 2007)

Pinpin
Just wanted to wish you lots of luck for your HCG tomorrow - keeping fingers and toes crossed for you hun         
Dx


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## ells (Mar 19, 2008)

PinPin thinking of you today   .  Hope its good news        .

Hi Peanuts   , I luckily respond better to intralipids too but Dr G has said that he would like me to do a combination of IVIg and intralipids.  I think the logic is that a mixture of the 2 will work as a double wammy and keep everything in normal levels.  I am sure a few more ladies will come along today to help.

Morning to everyone else, hope you are all okay.  Gotta get my   in gear and get ready for work   - really dont fancy it today but I only have today and tomorrow before we are on holiday so I cant complain too much   .

Ells


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## Han72 (Feb 15, 2007)

Hiya

just a quickie to say good luck to Pinpin!      

xxx


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## hickson (May 1, 2006)

Hi ladies.

hope that you dont mind me asking you all, but I have neg lad, and I am looking at having LIT. Does Dr G do it?..

How easy is it to see Dr G?. I am under Care at Notts .

H x


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## Maarias (May 4, 2005)

Seven
Dr. g has quite a few patients who have had immune tx alongside trying naturally.
I'm not sure how many of them still post but you could try sam22 or missyg - try pm'ing them as I'm not sure how much either of them post on her anymore - they are both pregnant!
Mx


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## Sprinkles (Nov 6, 2008)

Hope you're ok pinpin, thinking of you hun xxx

Cozy oh my now I'm confused.  The lady at TDL when she gave me the kits said that the three tubes were for me, and one for DH, but your note says otherways round?


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## Diane72 (Oct 29, 2007)

Hello All,

Pinpin, any news? Thinking of you.

Hickson, I too am at CARE Nottingham but went to Gorgy in addition to have my DQ Alpha/LAD tested. But he does not do the LIT himself- if you are having LIT with DH then Paul Armstrong can do it or if you need donor LIT you will need to go to Greece. Yes its straightforward and many have done it on here.

Ells, enjoy the holday-not long now! Hope you are feeling better.

Sprinkles, maybe you should phone them and check.

Seven, I've never got pregnant naturally but I'm sure Gorgy would be able to help

Peanuts, your NKs really don't look too bad to me (15 is considered borderline), in this situation I think your history will probably help determine whether prednisolone alone and/or intralipids are needed, so I'd take Gorgy's advice. How much of an issue your LAD is will really depend on whether you have been pregnant before and therefore expect it to be positive. Re: your cytokine ratio, humira can be used but someone like Ndukwe in CARE Notts. would say the intralipids would be sufficient, so discuss it with Gorgy. 

Cat, good luck!

Mag, I think its OK to just put your foot down and have 'alone time'. DH's Mum wanted us to come to hers for a big family do at X-mas with DH's brother's family (3 kids) and I just am not going to put myself through it, this journey (and X-mas) is tough enough.

FJ, welcome! If you look back a few pages, someone asked the same question a couple of days ago so you'll find some posts. Good luck!

As for me, still going   as you would expect last few days before OTD!  

Diane x


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## Cozy (Jul 17, 2008)

Sprinkles,

the Rosalind Franklin website says 30-40ml of whole blood collected in green top tubes with heparin from the donor (male) and one 10ml red top tube with not additive or in a serum separator tune (gel barrier) from recepient (female).

Dont know if that helps or not  

If you need clarification you could email Lorraine she will advise you, she is their client services co-ordinator and the earlier email is what she sent me.    [email protected] 

Its a minefield all this stuff isnt it

Cozy


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## sarahh (May 20, 2006)

Just having a quick update & read through - just wanted to say   for you Pinpin, I'm really hoping that no news is good news....

Rubbish news from our sperm re-test last wk as DH's sperm count has got worse (now 1.5million) & there are only 2% normal forms.  GGGGRRRRREEEEAATTTTT!!!  Just what we need.  Me with countless immune issues and DH with virtually no decent sperm... Hmm, ever get the feeling someone somewhere is trying to tell you something??    Anyway, I will not be defeated .... yet!!!  

Diane - really feel for you during that dreadful 2ww - hold on in there girl & try to keep yourself sane - somehow! 

Sorry no more personals. 

Sarah x


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## Newday (Apr 27, 2005)

anyone know how long itralipids stay in the system for/ I had two before sept one last month but have had to delay FET Dr G said I should have another one. But I am having trouble being able to fit the time in just thought if it stops in your system it may be Ok
dawn


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## lalaby123 (Sep 21, 2008)

Just a quicki from me to wish pinpin good luck for testing today I'm off to EC this morning will catch up with all after xxx


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## Cozy (Jul 17, 2008)

Hello Ladies,

Lalaby, good luck for your EC, I hope you get lots of good quality ones  

Pinpin, good luck, I hope you get a BFP   Have you tested yet?

Newday, sorry I cant answer your question. Hopefully someone will know

Sarah, sorry to read your DH's sperm test wasnt so good. Has he been taking anything to try and improve it?

Ells, I hope the antibiotics are working and you are feeling better?

Hi to everyone else 

Cozy


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## Jofie (Aug 7, 2008)

Hello everyone,

Hope it's OK for me to join you all. I had ET yesterday with Dr Gorgy and feeling a bit despondent because the two transferred weren't great quality (2+, one 5 cell and one 2 cell on day 2). I was on the highest dose of stims, and still only got 4 eggs (same as last time), 3 mature and 2 fertilised. Last time I got a BFP but then miscarried before the first scan. Admittedly, that was before any immune treatment and with unaddressed hypothyroidism but, on the other hand, last time we had 2 embryos that were "textbook pretty". 

Frustrating to go through all this for the second time and not have any margin for error. Have been feeling like I might as well have just gone for IUI, despite being minus a tube! We could have had about 6 cycles for the cost of one ICSI. Maybe we'll do that if this doesn't work, before seeing whether I can persuade DP to go the donor egg route.

Can anyone cheer me up with tales of BFPs with poor quality embryos?

Just for info, I'm on the works drugs-wise for raised NK cells and MTHFR (homozygous) - IVIG (2 during stims), prednisolone, clexane, gestone, folic acid, aspirin. I did 3 months of Humira (which did nothing for me) and LIT. I'm also on thyroxine and Armour thyroid for antithyroid antibodies. 

One bit of good news - my local surgery has agreed to do the Gestone injections for me, so at least that'll relieve the constant worrying that I'm not doing it right!

Anyway, better go and keep myself busy - finding it impossible to concentrate on anything!


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## Pinpin (Nov 4, 2008)

Hi everyone,

Thank you all so much for your lovely messages of support  

Well I can't believe i am actually writing this but the amazing Dr G told us yesterday that we have our very first BFP!

I'll give you the full story... I got to Dr G at around 9.30am yesterday and although we didn't have an appointment he called us into his office to review our file and write down all on fertilsation/number of eggs as this bit was done by The Bridge clinic on NHS... We then told him that we chickened out on the pee stick testing in the morning (he knew I might chicken as i'd spoken to him on the phone a few days earlier) and that I knew it had not worked because AF pains and small boobies he smiled and just wrote a prescription for a HCG blood test to do at the lab next door and told us to come back 4 hours later. Off we went, had the blood taken and then went to shop in John Lewis and have some lunch. The longest 3 hours passed and we were both geared up to receive some bad news, I'd told my DH my AF was not far as I could feel some radiating pains and pulling, anyway I had given a 1% chance of good news.
By 1pm we both agreed there was no chance we were going to pace Wimpole street up and down for the 1 final hour left so we decided we'd do the final 1 hour of waiting in Dr G's very comfy sofas in the waiting room.
We walked through the door and found Dr G standing by the desk of his PA in the reception/waiting area (which was empty from people appart from Dr G and his PA). He looked at me, smiled and raised his crossed fingers so I said to him "oh yes we are crossing fingers!" he immediately replied "the results are in" he then uncrossed his fingers and displayed 1 finger then raised a 2nd finger accompanied by the words " the results are very good - there is 1 maybe 2 in there with these numbers!"
I went into shock, managed to ask if he was joking, my DH was trying to ask the same question, he couldn't really talk either and he just gave my DH the sheet with the results showing HCG 282.6 for day 14. I jumped around Dr G's neck and hugged and kissed him so much and I cried... he was smiling! Then I hugged and kissed my DH we were just in shock. Then a couple appeared out of nowhere holding paperwork and they must have thought we were mad    but they disappeared straight away with Dr G probably working on getting their own BFP! Maybe they are some of you here!
We just sat there whilst they had their consultation trying to let the news sink in but all we could say was "I can't believe it" "I can't believe it either". Then Dr G gave me a drip of IVIG for immunes and this am we went back to test our LAD to check that following LIT treatment with PA has worked   

It is very early stages so we have to be cautiously happy right now and we are just so stunned that we got as far as getting our BFP, this is further than we have ever been and now we'll need to take it one day at a time as I know how fragile this could be with my immune issues.

I hope this gives you some inspiration, please     with me for my embie/embies to stick  

I'm going back tomorrow am for another HCG test to check that they increase 48h later.

Jofie - have you done a full cycle with Dr G before? Do not focus too much on the quality of the embies please trust Dr G. I wish you the very best of luck  

Diane - I am thinking of you hun     when are you testing?

I want to say a special thank you to Choice and Cath for your amazing support and the inspiration you give me  

Lots of love to all the other lovely ladies
Pinpin x


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## lalaby123 (Sep 21, 2008)

Pinpin -      that is FANTASTIC NEWS, i got tearful reading your rundown of the events, with that level of hcg you would have got triple lines on an HPT    so so pleased for you and I       that it/they!! stick for good , really really good news

Diane - good luck for saturday's test hope you are keeping sane, pinpin's news should give you some hope

Sprinkle - good luck with MFS I hope it went well today and i hope you get DH blood tests sorted

FJ - Dr G will basically taken down  your history and suggest what investigations you will need which could pinpoint possible causes to your failures - make sure you tell him everything even things that you may thing are unrelated

Mag08 - hope you're ok, you should do exactly what you feel like doing and nothing else

Ells - glad you're better hope no kidney stone?? and hope your mum's op will go well 

Siheilwli - sorry can't help with list of tests as he suggests different ones for everyone

Peanuts - as others have said your NK's aren't bad at all it seems the Cytokines are your problem and LAD

Seven - I tried naturally last month with immune treatment sadly it didn't work and I was already lined up to have IVF this month otherwise I would have tried again naturally. I think given your many attempts at IVF and the fact that you have had chemical pregnancies it is definitely worth giving trying naturally a go or perhaps IUI?? Dr G will advise

hickson - there is a thread on LIT with more info i believe

Sarahh- you have the right attitude and remember you have your age on  your side 

Newday - this is what i read in an medical report about intralipids:
In 47 patients the suppressive effect of the Intralipid after the normalization of NKa lasted between 6 and 9 weeks, in two patients this benefit lasted 5 weeks, and in one patient the effect was 4 weeks.

Jofie - good luck on the 2ww and remember sometimes the best quality embryos don't result in pregnancy when poorer quality ones do, its all down to nature from now sending you lots of     vibes

Cozy, Choice, Nix, Omni anyone else i have missed out hope you are all well

As for me ladies, EC was nice and easy with sedation though out of 15 follies only 6 eggs were retrieved, they believed because of the lose dose of drugs i was on due to my reaction the small ones hadn't caught up, now just have to pray that we get at least one decent embryo to go back in on Saturday, i was hoping to have some for the freezer but i doubt it now with 6, they went on about how good DH's sperm was and nothing about my sodding eggs so i presume they were rubbish quality as they didn't say anything and when i asked they said we will know tomorrow   thank fully though it seems now that the menopur has left my system i no longer have the chest/heart symptoms and am feeling more normal again 

ps i had intralipid through Health Care at Home yesterday which was a really pleasant experience and highly recommended

love to all
xxx


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## Jofie (Aug 7, 2008)

Pinpin - what fantastic news! Congratulations, that's so wonderful.   

With the right immune treatments you have the best possible chance of the embryos sticking for good! Sending sticky vibes and lots of  

I haven't cycled with Dr Gorgy before. My last ICSI was at the Lister before any of my immune issues were diagnosed. Hoping so much I can make it to a BFP this time because I feel I might have a better chance of it sticking now that I'm being treated for the immune stuff. Thanks for the support, and to lalaby123 as well, I really appreciate it.


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## Han72 (Feb 15, 2007)

Hello hello!

WOOOOHOOOOOO Pinpin - See I TOLD you I hadn't sung yet                                   Congrats to you and your DH and bless Dr G with his little secret smile   

Lalaby - 6 follies is fantastic, especially considering the low dose you were on! And they can't tell you anything about the quality of the eggs until after fertilisation so please don't feel that your sterling effort was being ignored! I bet they're all fantastic quality and The Call will reveal 100% fertilisation and you'll have some lovely blasts to go back in AND to freeze          

Wish I could have Intralipids at home   I've got to trek over on Monday, still desperately casting round for a cheap one-way ticket (got the rtn journey with eurostar frequent traveller points but the outward journey is nearly 200 squids  )

Jofie - congrats on being PUPO honey sending you loads of  And I've heard of several cases where "poor quality" embryos have become perfect babies so don't you worry about that, they're in the best place possible now!       

Ells -  hope you're feeling better hon

Sorry no more persos got BIL and his GF visiting as well as my cousin lodging with us at the moment and need to start the dinner 

Love to all!

xxx


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## lalaby123 (Sep 21, 2008)

thanks Nixf that's reassuring  sorry you have such a long journey from gay Paris I thought mine was bad from Manchester 

Cath - hope you are well too realised i had missed you out in last post 

xxx


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## Pinpin (Nov 4, 2008)

Oh thank you Lalaby, Nix and Jofie 

Jofie, as this is your first cycle with immunes and with Dr G you have some very good chances i really believe this.

Lalaby - 6 eggs is good, remember you want quality not quantity. Also it's good news that you're feeling better now you're off the menopur  Sending some  for your eggs and DH super sperm to get jiggy overnight in the lab 

During my cycle Choice4 who used to post on this board and is now pregnant has provided me with amazing advice that i am convinced have contributed to bring my BFP. 
Although she doesn't post much on here this days I have kept in contact with her through PM and she knows so much, she is an incredible lady. I call her Dr G's assistant because she just knows all about his protocols and in a lot of detail and provided me with extra advice.
*[fly]Choice4 if you read this - THANK YOU ![/fly]
She is a great loss to the thread but she is amazing at answering PMs, a true star.

Oh I    he/she they stick

Pinpin x*


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## Donkey (Nov 24, 2007)

Pinpin that is so wonderful        

You have given me hope!!!!!

Lalaby 6 eggs is GOOD!!!!  I would be thrilled.   for fertilisation tonight.


Lots of love
Donkey xx


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## Saffa77 (Feb 6, 2008)

Hi ladies

Just had my bloods done on Monday with Dr G and now am waiting for results which take about 2 weeks.  My Dp wasnt there so there are a few blood tests that we need to get done here and courier back to london - has anyone had this done before?  Did they get to lab ok?

Just so worried about all these tests dont know why - maybe because I have had all the issues with my endometriosis in the past and ops etc that I am worried these tests are going to come back with major issues.  I asked Dr how I would do the drugs etc (drips especially) if I am here in Scotland and he said to go to London for the week before I cycle in Portugal and then I can head to Portugal from there,  just so much to take it just hope im not going to freak out LOL sorry but just overwhelmed by it all, also the cost of it all EEEEEK paid quite a bit for the tests and scan but hopefully will have some of it back from insurance - if you require IVIg is it about £1350 for each dose how does one afford it all?

Hope you all well and PinPin wow that is such good news!  Congrats!!!

Sx


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## Diane72 (Oct 29, 2007)

Hello All,

Pinpin, what a wonderful story, I am over the moon for you    , fantastic!!!!!!!!! Good luck! That is a really excellent HCG level for Day 14, really strong, which is reassuring. As Gorgy said could easily be two. Tremendous!

As for me well I tested tonight (evening of Day 13) with the Clearblue digital and got a 'pregnant 1-2 weeks' but trying to keep it balanced in my mind as I know I could lose it any day and my HCG on Saturday will give me a better indication of how stongly its hanging on there. Been here 4 times before in the last few years and it led to alot of heartache so I'm just going to 'keep it real' and see what each day brings one day at a time. Really praying the outcome can be different but realise the odds are against me.  

Hugs to everyone else,

Diane x


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## lalaby123 (Sep 21, 2008)

Oh Diane that is great news I can see why you don't wAnt to get too excited but I hope the LAD and immune support will keep this one for you xxx


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## Peanuts (Apr 29, 2007)

Hi girls

pinpin - congratulations    , so happy to here you're lovley news, especially the whole story in DrG's waiting room!  Fab news!

Diane - I think you're allowed to get a little excited about your +ve test, keeping fingers and toes crossed that it all become real for you on Saturday        Thank you so much for the advice on my results, was thinking that my NK levels looked ok, but still getting mt head around things

Sarahh - sorry to here about the sperm analysis, but you've got a great attitude, don't let thing get you down  

Ells - hope you're getting through work of and you're all set for your hols!  off somewhere exciting?  How high are your NK levels that DrG is wanting a double wammy of Intralipids and IVIG?

Lalaby - Thanks for the advice hun, hoping to speak to DrG on Monday, so will hopefully all become clear - just so much to take in!  Well done you on your 6eggs, thats a great number, keeping fingers and toes crossed for fertilisation, hoping that super sperm does the trick!    How does [email protected] compare to DrG's prices for Intralipids?

Jofie - congrats on being PUPO hun  .  Try to keep your chin up through you're 2ww, I have a FF who only ended up with 1 low grade embie to put back and now has a lovely baby girl.  Its what goes on inside your incubator that counts, not how cute they are under the microscope!   

Saffa - well done on getting your blood done today.  I was a bit scared by it all too, but now I've got the results and help interpreting from the lovely ladies on here, I feel a bit better about things.  Its all a bit overwhelming, but when you get your results you'll be able to come up with a plan to deal with everything  

Big hugs to Cozy, Niccad, NewDay, Nix, Sprinkles, and anyone else I've missed  

Got my phone consult with DrG on Monday, so will see what the great man comes up with.  Not planning to cycle until Feb/March next year, so I've got time to work everything out!
Take care
Dxx


----------



## Cozy (Jul 17, 2008)

Pinpin and Diane


 on your     

I hope you both have happy and healty pregnancy and  that everything goes ok

Cozy


----------



## Jofie (Aug 7, 2008)

Diane, beaming   your way that the immune support will make the difference this time. 

Lalaby - keeping everything crossed for a good rate of fertilisation today. Not long to wait! 

Peanuts - thank you so much, you put a much-needed smile on my face. Hope Dr Gorgy comes up with a good plan for you on Monday.  

Good luck to anyone else who is waiting for news / getting ready for the next stage. Hope to get to know you all over the next few weeks.


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## Pinpin (Nov 4, 2008)

Diane -   I am so happy for you !!!   I understand about being cautious as it is scary but I have everything crossed that your HCG will be high and reassuring for you. I'm going in to Dr G again now to check mine after 48 hours from the last one.

Lalaby - I have everything crossed for your for some good news on fertilisation today   

Will be back later to catch up with everyone else  

Pinpin x


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## lalaby123 (Sep 21, 2008)

thanks Pinpin  did you have a 2 day or 3 day transfer? mine is going to be 2 day and I am worried it is too early to know which one is good quality.....i know i know i analyse everything but i can't help it, i fear that had it been midweek they would have done a 3 day transfer but because it falls on a sunday they will do a 2 day transfer


----------



## Pinpin (Nov 4, 2008)

Lalaby - as long as they can identify the strongest embies on day 2 or 3 i am sure it will not make much difference. I had my transfer on day 5 as there were still 5 of the same quality on day 3 they would not have been able to pick. Diane I think had day 3 transfer.
How many have fertilised? Have they definitely confirmed to you they are doing a day 2 transfer?
I know it's easier said than done but trust the embryologist and if you have any questions or doubts ask the advice to Choice4 or ring Dr G as they would give you some good advice like they did with me.

I've just come back home from central london for my Blood test at Dr G and will call him later to find out my HCG...  

Pinpin x


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## Donkey (Nov 24, 2007)

Diane congratulations    that it sticks  
xx


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## lalaby123 (Sep 21, 2008)

thanks Pinpin all the best with your second blood test I hope they are multiplying as they should     

Diane how are you doing I     this is your lucky one and it will lead to a   this time

as for me I got the call today to say that out of the 6 eggs retrieved only 3 were mature enough to be fertilised (thanks to my body reacting to menopur) and that all 3 fertilised but only 2 are normally fertilised (one has overfertilised due to DH keenness on making family!) so as only 2 they are going for day 2 transfer tomorrow as they believe my body is best place for them (though i don't agree   not with my NK cells and the fluey symptoms I started getting as of yesterday   ) 

anyway glad at least we got two and hope at least one will be good quality for tomorrow morning. Meanwhile overdosing on vit c and hot water lemon to get rid of chest congestion as can't be having any inflammation while trying to get pregnant.....on the upside i am feeling normal again since yesterday and no tight chestedness or heavy heart feeling so I know it was all a reaction and not anxiety as they thought it was....


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## Ourturn (Oct 8, 2008)

Pinpin - Wooohoo! CONGRATULATIONS! Your post has given me hope. Well done you  

Dianne - I am always the same as you as I know what its like to mc often   But I'm going to CONGRATULATE you anyway. You must belive that the immune treatment will make this one stick! Negativity be gone that's an order!      

Lalaby - considering your reaction to menapur and the low dose you have done REALLY well. Having 2 to transfer is a great result, will keep everything crossed    

I am so glad we are going to see Dr G, this thread is giving me hope  

Anna x


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## Diane72 (Oct 29, 2007)

Hello All,

Choice, if you are reading it was lovely to see you  

Ms.Anon, (my new name for the lovely lady that did IVIG with me who reads but doesn't post), wishing you luck and hoping the LIT all went well after the IVIG. Good luck!

Pinpin, I hope that the HCG has risen nicely!  

Peanuts, good luck with th phonecall

Lalaby, good luck with the transfer!!! I hope you feel better soon

Donkey, Jofie, Cozy, sending you and everyone else hugs  

As for me I ended up going in today (Day 14) rather than wait until tomorrow to get my HCG test done. It was 29.1 so not great but early days and I go back in on Monday to see how its done  . I also had IVIG today so hopefully that will help. Mr Gorgy really was so kind, I don't know how he puts up with women like me turning up un-announced in a panic at 8.30am in the morning!

Diane x


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## lalaby123 (Sep 21, 2008)

Diane 29 is good for day 14 I am sure dr g and ivig will do the trick for you this time stay embie stay
please don't do too much activity or running around take it easy until next test xxx


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## niccad (Apr 28, 2009)

Diane... Yippee!! Many congratulations. I'm praying that the ivig will work. DrG seems to be a miracle worker so you're in great hands.

Pinpin.. Hi hon. Good luck on the bloods. I'm sure you'll be fine and I'll see you on the other thread

Lalaby... 2 embies is great news. After the hard time you've been through it's such a great result and they are definately better off being looked after by you x

Mrs anon .. Great to meet you briefly today. I hope the LIT wasn't too painful. On the plus side our arms look great for halloween! I hope dh is ok xxx

Have great weekend everyone. I will be busy jumping up and down waiting for AF to arrive so I can start my FET

Nic xx


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## bluprimrose (Sep 1, 2009)

book-marking

bpxx


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## Peanuts (Apr 29, 2007)

Hi girls

Diane - thats great news , keeping everything crossed for you that the IVIG has done the trick and wee embies are snuggling in nicley     Good luck for Monday    

Lalaby - thanks for the PM, really appreciate it.  Good luck with ET today    .  You have done so well so far, I know you're disappointed, but its time to focus on those wee embies and looking after them.  I'm sure the Intralipids will have kept the NK's at bay and your embies will be making themselves at home     

Jofie - glad I made you smile - now keep it up for the next 2weeks!  

Big hugs to everyone , gotta go, DH is dragging me out for a bike ride - seems to think it'll do me good!!
Dxx


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## mag108 (Jun 28, 2008)

hi all
Havent been around for a few days, been out socialising for a change! Off out tonight to a space monsters party, will have an hour to rustle up some costume or other. 

Jofie: welcome, I am new to this thread too. Sorry that you are feeling down about your response, people do say that noting can hapen with the best grade embyos much the same way as gr8 things can happen with poor quality embryos, non of it is an exact science. Just as a matter of interest have you tried the poor responders thread 
http://www.fertilityfriends.co.uk/forum/index.php?topic=211062.675

PINPIN: WHat fantastic news, I am so so chuffed for you!   

Sprinkle - good luck with MFS

lalaby123: glad the EC seems to have gone ok, 6 eggs is gr8! Hope ET went ok  

Diane: I know you have to be cautious and I completely get that, but just to say how very happy I am for you, you are over one big hurdle! And I agree 29 is good! Someone on poor responders I think was around that same figure on day 14. and she is now at 158 ( 48hrs later)  

Ells - Were are you off to for your hols?

hi to everyone else Peanuts, Nix, Anna, Bluprimrose, Niccad, Donkey, and happy halloween. 
For anyone who resents this 'Amercian' import, it actually started in Ireland and was picked up by the US. In my day as a little Irish girl we went around knocking on doors, dressed up of course saying 'any apples or nuts, cigarettes or butts'..... that was along time ago. If you got a grape it was exoctic, no sweets you are kidding!
x


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## mag108 (Jun 28, 2008)

........oh, just  2 quick questions from me.
Want to get interuterine NK cells checked (I have to say it was news to me that DR G didnt do ALL of the tests there and then). I am thinking of Liverpool womens as am up north, is there anywhere else I should consider?

and also my clinic, the lister, say I should have CD69 done, that Dr G doesnt do these...any thoughts on that?
X


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## Cozy (Jul 17, 2008)

Mag,

I had the uterine biopsy done at LWH with Dr Siobhan Quenby in 2007 and I have raised uNK cells. In my opinion it is well worth getting it checked out.

I thought Dr G will do it if you ask? I think when I asked why he didnt do it he said because not many people have this problem.. or something like that  

I'm not aware of anywhere else that does it.

Cozy


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## mag108 (Jun 28, 2008)

thanks Cozy thats really helpful
MAG


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## lalaby123 (Sep 21, 2008)

Mag dr g will tell u to do it if he thinks u need it basically if your tbd alpha is high and u need humira then he saves u torture of having it done as the treatment is the same ie humira but if your tnf comes back borderline as in my case he suggested I do the biopsy to determine if I need to take humira or not 
as it's not a pleasant experience I would wait and see what your bloods say 

As for me ladies I am PUPO with two 4 cell embies  the waiting game begins and my test date is sooooo far away 16 nov I would know well before then if I am or not as my period will show before if I am not but keeping everything crossed that it won't    

pinpin and Diane hope your keeping well and holding on tight 

Love to everyone 
xxx


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## mag108 (Jun 28, 2008)

........lalaby123 thanks for that, I suspected there werent many places that did it and I think my TNF are borderline. Congrats to you on being PUPO!, lets hope the 2ww is not too tough


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## Sprinkles (Nov 6, 2008)

Hi all

Thanks Cozy for info on blood tubes will ring to double check

Sarahh sorry about sperm retest keep going hun x

Jofie good luck

Pinpin fantastic news what a lovely tale as well certainly had a tear in my eye whilst reading

Lalaby congrats on being pupo 

Nix hope trip goes ok and isn’t too laborious

Diane again congrats and have everything crossed for you mrs, take it easy  

Hi to everyone else hope you are all well x

I have had the tx week from hell, have been so upset and havent slept since Wednesday, dont want to go through it all now, but to cut a weeks long turmoil short am back at St Marys and waiting for AF to arrive to start tx.

Someone mentioned uterine NK cells, is it right that the tx for these are the same as in the blood, humira?


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## Cozy (Jul 17, 2008)

Sprinkles,

I have raised uNK cells and am having Humira to treat them. I have had steriods on my previous cycles. The treatment for nk cells in the blood is not treated with Humira its steriods, and IVIg and/or Intralipids. High TNFa is also treated with Humira.

Sorry to read you are back at St Marys, I hope it all goes ok for you there

Cozy


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## lalaby123 (Sep 21, 2008)

Sprinkle what happened sorry uve had disappointment atleast u can still start thus cycle I gather St Marys r back in action then good luck with the txt xxx


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## Sprinkles (Nov 6, 2008)

Thanks guys, yes Marys and up and running again


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## bluprimrose (Sep 1, 2009)

hello ladies

hope you are all well.

i'm sorry if i'm repeating myself - i have posted all over the place and can't remember what i've posted where!  

i am about to start my SIXTH!!! cycle (5TH fresh) and am slightly panicking that it'll never work as i've not had immune testing after so many failures.

i have recently had these blood tests done:

FACTOR V, II & MTHFR
FASTING INSULIN & GLUCOSE
APA
TEG

and i'm getting the results next week.

can somebody please give me a comprehensive list of all the blood tests/tests that need to be done for full immune testing?

also, i am hoping to make an appointment to see dr gorgy asap - is he a leader in the immune field?  and he has a clinic in london doesn't he?  

could you please tell me how many tests there are, how long it takes to get results, how much they cost - and if you can have them when on the bcp (have just started it for my next cycle).

does mr ******* have the same credentials as dr gorgy?

i feel like i'm running out of time and am going into this next cycle unprepared - but am scared to postpone it due to my age...

aarrrgggghhhh!

thank you so much in advance for all your help.

bpxx
p.s. am seeing my gp first thing monday morning and once i have the blood test list i am going to see if i can have any of the tests with him to save me money.


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## Diane72 (Oct 29, 2007)

Hi Bluprimrose,

You'll find a full list on this thread:

http://www.fertilityfriends.co.uk/forum/index.php?topic=80433.45

Yes Gorgy will be able to do comprehensive testing for you,

Diane


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## lalaby123 (Sep 21, 2008)

Blueprimrose I understand your sense of urgency but a couple of months won't make any difference in terms of your age but the right immune treatment could make the difference so get the rest of the level one tests done with your Gp but don't wait for results as these are not as important as level twos which dr Gorgy will do for you 
my first consult and bloods came to 1090 
as Diane had said the list of bloods is in the first thread under the investigation and immunology section called guide to immune testing in the uk
don't panic and just be happy that u r taking the right steps to increase your chances of success
also I just realized in the part 5 of this thread I had replied to your question about LIT and LAD but addressed it to feistyblue by mistake hope u saw it 
good luck
xxx


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## bluprimrose (Sep 1, 2009)

thank you so much diane and lalaby - i will have a look at the link.

i don't think i did see the reply in part 5 - i will search for it though!  thank you.

i have been away with work so had a few days with no mobile phone reception and no time on my hands!

thank you again    

bpxx


----------



## bluprimrose (Sep 1, 2009)

diane and lalaby...

p.s. have just had a look at the link, thanks so much.

which tests are classed as level one and which level two?  there seems to be such an extensive list - am not sure what to go to my gp with.  (so far i have only looked at the top of the thread so maybe the answer is further down.)

are the tests i have already had done, the ones i listed yesterday, classed as immune tests?

thank you again

bpxx


----------



## Sprinkles (Nov 6, 2008)

Morning ladies

Yes figured out it is one tube for me and three tubes for DH for LAD test, the colour code on the blood forms told me.

Read this interesting article in Now magazine in a waiting room through the past week, which was based on Lady GaGa and her fetish for tea cups "research by the University of Harvard US found tea contains I-theanine which causes cells in the immune system to secrete up to 15 times more Interferon.  Interferon stops viruses replicating and triggers the release of immunity cells."  

Knew tea was great but didnt realise this, know its not Marie Claire or anything but interesting all the same...


----------



## bluprimrose (Sep 1, 2009)

p.p.p.s diane and lalaby!!!

will the fact that i'm now on the bcp mean i can't have any of these tests done?

THANK YOU SO MUCH

bpxx


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## lalaby123 (Sep 21, 2008)

BP I am on my iPhone so can't copy and paste the list of tests but if u scroll down on the guide to immune testing in the uk thread it lists them clearly saying 'my level 1 tests were...' and those are standard and level twos dr g will tell u what u need 
not sure about bcp I don't think it should affect your immune test results 

Sprinkle glad u got bloods sorted has af started yet? interesting re tea it makes sense as I recently read that one cup a day is good because it has high antioxidants which r good for immunity and fertility


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## Diane72 (Oct 29, 2007)

Bluprimrose,

As Lalaby says check the immune thread, I personally don't know what is Level 1 vs Level 2 but here's what I've had private vs. NHS

Private
NKs
CD3
CD19
CD56
CD19+CD5+
TNFa:IL10
IFN-g-IL10
Histone antibodies 
Thyroid antibodies
ANA
DNA Antibody
Cardiolipins
MTHFR
Factor V Leiden
Protein S
TSH

NHS:
Karyotyping
Prothrombin/Thrombin time
APTT
Claus Fibrinogen
Lupus
Anticardiolipins

Hope this helps, Diane x


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## Cozy (Jul 17, 2008)

Hi Ladies,

dont know if you know, but I have been told that Dr Gorgy is away for a week from 14th November... just in case anyone was planning on going then.

Thanks for letting us know Choice  

Cozy


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## deegirl (Jan 17, 2009)

Hi Girls
Off to see Dr G tomorrow morning.  I've already posted him all my notes, test results etc. so hopefully he'll have me all worked out by now!!!  

Hope you're all well.

Dee


----------



## lalaby123 (Sep 21, 2008)

Cozy and choice thanx for letting us know that's when I will need him if I hav a Bfp  
I better get in touch with him to know what to do xxx


----------



## lalaby123 (Sep 21, 2008)

Dee - all the best for tomorrow's appointment and hope your blood tests give you some answers


----------



## Peanuts (Apr 29, 2007)

Hi girls

Lalaby - congrats on being PUPO!  Hoep you've got looks of relaxing things planned for your 2ww.     

Pinpi9n & Diane - wishing you both lots of luck for tommorw, here's hoping your levels are rising nicely   

Dee girl - good luck with your appt tomorrow  

Blueprimrose - best to give DrG a call and ash him about tests and when its best to do them  

Off to bed - got my sister and wee cousin acros with me, so knackered!  Nervous about phone consult tomorrow, but hoping it'll give us a plan to go forward with.

Big hugs to everyone  
Dxx


----------



## Jofie (Aug 7, 2008)

Mag and Sprinkles - thanks for the good wishes. Mag - I haven't been on the poor responders thread. Those big threads intimidate me!

Lalaby - hope the 2ww is going OK so far. I'm one week in and analysing every tiny symptom like mad.  

bluprimrose - I agree with what lalaby said. FWIW, I ended up having more than a year between cycles. I had LIT and Humira and then ended up not starting when I planned because I realised fixing my poorly treated thyroid issue had to come first which was totally interlinked with the immune stuff. It's taken months but has been totally worth it. The Humira didn't work for me, but the protection from the LIT was still around after 8 months, so it was time well-spent. 

Waiting is difficult, and I am worried about my age too, but I knew I didn't want to go through all this again and risk another miscarriage without doing everything possible to avoid it. 

Think I've given myself the best chance with Dr Gorgy - I would def. recommend seeing him and getting the full Beer tests and protocol. The tests don't take that long to come back and he will send you for only the ones he thinks you need based on your history / previous tests.


----------



## lalaby123 (Sep 21, 2008)

thanks Jofie  , so far so good, each day i am visualising the progress of the embryos ie today day 4 'morula' to help make it real! you gotta try anything   my test date is a long way away as they told me to test 18 days past EC. I wonder when has Dr Gorgy told you to test? It seems he is going to be away when I am due to do my pregnancy test so i need to get prepared.....good luck with your 2nd week that will be the toughest I hope you can stay calm and positive and stave off anxiety and    you will get a BFP


----------



## Jofie (Aug 7, 2008)

Lalaby - Dr Gorgy told me to test on day 14, which is next Monday. I wonder why they told you day 18 - seems a long time  

Have been staving off anxiety with DVD marathons. I know I'll be tempted to test at least a day or two before the official date because I'm so impatient, but I'm going to try and hold out for the blood test.    for us, also Pinpin and Diane with their levels and anyone else at a waiting stage.


----------



## lalaby123 (Sep 21, 2008)

Thankx jofie I pray u will soon join the ranks of pinpin and Diane and hope all your hcgs keep on growwwwwwing xxx


----------



## bluprimrose (Sep 1, 2009)

hello all

i just wanted to thank you all for your help with my questions about imuune testing.  i've had a very productive day! 

i went to my gp this morning before work and he took 7 vials of blood (i printed out the lists of tests you all pointed me to and he did the ones he could), then i popped out of my office at lunch and went to dr gorgy's clinic as it's nearby.  i called this morning to see if i could have the nk and th tests done in time for my next cycle and someone was going to call me back - but no-one did.  so i thought i'd pop in - before i knew it i was sitting in front of dr g (he'd had a cancellation), then i was 3 doors down having my bloods taken, then i was much much poorer!  now my blood is winging its way to chicago and i'll have the results in 3 days.  it was all a bit quick and i'm a bit stressed about the cost but i'm thrilled i've managed to have all the tests done in time to get the results and hopefully act upon them before my next tx.

so thank you thank you thank you for taking the time to help me.

sending lots of hugs to you all and pma to those who need it.

bpxx


----------



## niccad (Apr 28, 2009)

Bluprimrose - amazed that you managed to fit everything in, and also amazed that your GB was happy to do all the tests (mine rolled her eyes and said no!)

Lalaby - Many congrats on being PUPO... I hope they are settling in nice & snuggly

Jofie - I'll be praying     for you... not long to go  

Cosy - thanks for saying about DrG being away... He's out the week of my ET by the looks of things so I'm not sure what to do about ivig...  

Diane & Pinpin - hope those numbers are doubling nicely... 

Hello to everyone else also. My AF finally appeared (over a week late) so I'm now officially on my FET cycle. Feels really odd having no DR and stimming. My FET is NHS and they just do a scan on day 10 & leave you to do an ovualtion test & contact them when you get the smiley face   I'm really worried as I only have 2 embies & they might not defrost. Waiting to hear back from DrG with new dates for intralipids & when to start clexane, prednisolone, etc. I had LIT with Dr A last Friday and have found the side effects quite hard... anyone else had this? 

Big hugs to all 
Nic xx


----------



## lalaby123 (Sep 21, 2008)

Bluep so glad u got all the tests done well done and I'm amazed dr g said tests will be back in 3 days as they normally take 8-10 days well done u for popping in and cutting the chase 

thanx Niccad ...I suggest u ask dr g for a prescription for ivig or intralipid and with that u can hav it at home through healthcare at home that's what I am hoping to do I dont think he likes to do it but if he is going to be away then u/he hav no other choice good luck on this FET


----------



## Ourturn (Oct 8, 2008)

Ladies - I have raised uterine nk cells, had the biopsy at liverpool, result was 6.1...anything over 5 is raised. Dr Q said whilst they were raised they were not super high and she felt confident steroids (20mg) would do the trick. Do you think Dr G will prescibe humira? Been reading up about it and its scary stuff!  

Thanks 

Anna


----------



## Cozy (Jul 17, 2008)

Hi Anna,

I have raised uNK cells @ 8.3%. I have had steroids for my previous cycles but for this next one I am on Humira. I have had one injection so far.

Dr Beers protocol recommends Humira for raised uNK cells/CD57

Cozy


----------



## lalaby123 (Sep 21, 2008)

Ladies just to let u all know I hav been reimbursed by bupa international for ALL my claim from dr g which included an intrilipid I sneakily put in there 
I am soooooo pleased as that will pay for my last ivig now tempted to claim for ivig anyone had any luck with this


----------



## Cozy (Jul 17, 2008)

Hey Lalaby,

thats good news getting Intralipids paid for... what did you say that was for? I'll have to try it

I have Intralipids and IVIg done next month

Cozy


----------



## mag108 (Jun 28, 2008)

hi everyone 
a bit under the weather (is it my body or my annoying DH?)

also very very dissappointed.....Called Dr Quenby at Liverpool, spoke to the sec. She said they are not doing the tests anymore privately! !!! (anna when did you get yours done) 

If I wanted it I would have to be part of a double blind trial (so I may or may not get treatment) I said I didnt have time for that !

Any other ideas for uterine NK cells including London? am stonkingly fed up!

thks


----------



## lalaby123 (Sep 21, 2008)

Mag why don't u do it with dr g I had mine done by him
hope u feel better soon 

Cozy I just sent them the claim form and on the invoice which dr g's accountant had sent me I wrote a little description in front of each line and for intralipid I put treatment to suppress immune issues as he had put immune issues in his diagnosis... Let us know how u get on with your claim xx

hi to everyone else xxx


----------



## mag108 (Jun 28, 2008)

lallby: thats what I thought! He does them too! Why didnt he suggest it when I was down in London!


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## lalaby123 (Sep 21, 2008)

Prob because it has to be done on day 26 of a 28 day non conception cycle or a few days before your period is due u better email him to clarify this to you so u don't miss this month xxx


----------



## lalaby123 (Sep 21, 2008)

Hi Shelly 
your nk activity is slightly elevated should be under 15
your cd19/5 is v elevated....are u a poor responder? Both of these are treated with ivig/intralipid are luckily u respond equally well to both so he will suggest a combination

your main issue I think is your tnf-alpha which should be under 30 for this he will prescribe humira but ivig can also help with this 

your LAD is low but not too bad as your b cell is 40 and he wants it over 50 so he may suggest LIT as well 

On top of above he will prescribe u aspirin, steroids and maybe clexane

I hope this will help u with your questions on saturday 
good luck xx


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## Cozy (Jul 17, 2008)

Shelly,

Your NK cells are elevated and need to be under 15. Your tests show you respond better to Intralipids, so he may just put you on that, but I know Dr G likes to use a combination of Intra/IVIg to get the best possible effect. Though your numbers are better with Intralipids.

You will be advised to have LIT. Your (B cells) IgG+ is  25.0% and that needs to be above 50.

Your CD19+cells CD5+  are high, you will probably be given Gestone and pessaries and your IVIg/Intralipids will also help lower this.

Your TNFa is high - Humira is usually given for this

You will also be prescribed steroids and clexane

Do you have Dr Beers book? this will help you get your head round it all

Cozy


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## Diane72 (Oct 29, 2007)

Morning All,

Shelley,don't think I can add anything.

I was feeling a bit   yesterday and just wanted to say thanks to those that PM'd me  

My HCG result was only 43 vs. 29 on Friday, so not great, I'm praying for a miracle for tomorrow's test but know the odds are stacked against us.  

Dx


----------



## lalaby123 (Sep 21, 2008)

Oh diane I really feel for you   
I've been there before know how it feels 
I really   your hcg does a somersault and jumps to 100 for the next test 
hav u had ivig/ intralipid since BfP?


----------



## Diane72 (Oct 29, 2007)

Hi Lalaby, yes I had IVIG on Day 14


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## Cozy (Jul 17, 2008)

Diane,

I'm sorry to read your numbers arent doubling and I   that things change   

Cozy


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## Ourturn (Oct 8, 2008)

Diane -     I am praying your numbers shoot up!    

Mag - pm'd you. That's a bummer. I had the biopsy done on cd21 I think. It does need to be done around that time of your cycle. 

Cozy - How are you feeling, any side effects after the shot? So for an ivf tx when do you take humira? Is it pricey or can you get it via your gp? Also how do you now if its worked...you don't have to have another biopsy do you? (I nearly passed out when I had mine done) Sorry for all the questions! 

I am in awe of your ability to interpret test results! 

Anna x


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## Cozy (Jul 17, 2008)

Hi Anna,

my uterine biopsy was def one of the most painful things I have had done... and will never repeat 

I've had no side effects from Humira, other than getting a stinking cold 2 days after I had it. I have my next shot on 10/11. Humira was about £740 for 2 injections... not cheap! I dont know if it will work as I wont be having another biopsy to find out, I am hoping the proof will be when I get my BFP  .  My GP wouldnt entertain the idea of helping me out with any of my drugs, so I've had to pay for everything myself. 

Are you going to have Humira or steroids?

Cozy


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## Ourturn (Oct 8, 2008)

Cozy - I will go with whatever Dr G recommends. I have to have all the other immune tests with him. We know I have unk's. Knowing my luck the tests will highlight a bunch of other immune issues too. 
But I will do what ever it takes. I think an 8th miscarriage would send me over the edge! 

I have a very sympathetic gp who prescribes me steroids so she may prescribe me the humira BUT as its so expensive may not be able too. Will try.


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## Diane72 (Oct 29, 2007)

Sobroody, just want to say thanks for the   and to send you a thousand wishes of good luck, I'm amazed that 7 miscarriages haven't already 'sent you over the edge' you are very brave and deserve success    

Cozy, thanks for the   I was thinking of doing the uterine biopsy if this doesn't work out, sounds painful-eek!

lalaby thanks for the   too, I hope all is going well with you  

Hugs to everyone else,

Diane x


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## niccad (Apr 28, 2009)

Diane... I'm   that the numbers shoot up...  The numbers are increasing rather than staying the same so please keep some  . Thinking of you    x


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## Diane72 (Oct 29, 2007)

Thanks Niccad


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## lalaby123 (Sep 21, 2008)

Shelly glad to hav helped I'm sure u will get more from dr g 
your high cd19/5 cud be why u didn't respond well as it usually points towards having antibodies to hormone and the high cytokines wouldn't hav let any embie survive or so says dr beers book 
it's great u can address these now before your next try xxx


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## Donkey (Nov 24, 2007)

Hi girls

Diane    I really hope that your numbers go up  

Well I booked my LIT today with Paul Armstrong.  Dr G had told me to wait until I had my final zoladex implant (next monday) and I would then have a few weeks before I started stimming to get it done.  Luckily I was impatient because initially his secretary said there weren't any appts til the new year.  I had a major panic, a few tears and said that I'm having an nhs cycle which is totally inflexible and they don;t agree with the immunes so won;t work with me.  So the lovely lady phoned back and has squeezed me in on the 4th Dec.

As for high results, I think I have the record cd19/5 results.....50%!!!!

I hope you are all well
Donkey xx


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## mag108 (Jun 28, 2008)

Hi everyone, just a quickie from me. DH wanted me to buy his birthday present tonight so only just in the door!

Diane: I am praying those numbers go up hun  . Its so tough. 

I did alot of research into hcg in Sept as I had a m/c with hcg levels that fell and then started rising. In 80% of pg hcg double every 48 hrs. In the rest its not so.

see also ...http://blogs.webmd.com/healthy-pregnancy/2005/11/hcg-levels-and-ultrasounds-in-early_30.html
'however, and an HCG that does not double every two to three days does not necessarily indicate a problem with the pregnancy. Some normal pregnancies will have quite low levels of HCG, and result in perfect babies'

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


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## sarahh (May 20, 2006)

Hi all, just wanted to say Diane - really   your numbers go up - after a chemical pg for me last cycle I know how agonising those few days waiting are to see if the levels are going up or not.  Sending you lots of  . 

Also, Pinpin - I think I am reading right that you had a BFP.  Huge congrats and also   that your levels rise nicely.  

We are seeing yet another dr - a consultant urologist regarding DH's sperm on Friday this wk.  What with his rubbish results and my huge immune issues I think the odds are really against us!!!!  

Lalaby - hope you're not going too   yet during the 2ww altho suspect it has kicked in now!!  The 2ww lunacy.  We all know what its like!!  Really feel for you.  But keep away from the pee sticks!!!! 

Will try to keep up with the chat but finding it difficult to read sometimes when I'm desperate to get on with another tx!!! (God I never thought I'd say that I was desperate to get on with it!!!!).  

Sarah xx


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## Trueblood (Aug 31, 2009)

Seeing Mr G on Thursday, DH had Sperm DNA Fragmentation test and we will be getting out results.  I'm having a endo biopsy, lets hope it doesn't hurt too much.


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## Jofie (Aug 7, 2008)

2ww madness has really kicked in over the last 2 days (on day 9 now). It's 4am but I'm wide awake and completely fed up because the faint symptoms I was having up until 7 days post-EC (probably remains of the Pregnyl) have completely disappeared - no more twinges, backache, sore boobs, faint metallic taste, sleepiness, not feeling at all hormonal - just completely normal. Went to bed early to try and persuade myself they might come back, but woke up when DP came to bed and no chance of getting back to sleep feeling like this. I know it's early to give up hope, but I know this is different to last year when I got my BFP when I was having twinges from the start, really sore boobs, and strong implantation cramps earlier than this.

The hardest bit is going to be going through the motions until OTD on Monday - especially the gestone and clexane injections because I'm bruising quite badly (I'm on 60mg clexane). I just want to get it over with so we can start coming up with a plan B. Hoping DrG will let me do an IUI asap while I still have the remains of the immune treatments in my system!

Diane - really sorry to hear your levels didn't double. I'll be keeping my fingers crossed it turns around


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## Saffa77 (Feb 6, 2008)

Hi ladies

Just phoned Dr Gorgy and my NK assay and MTHR and cytokines or something like that are back eeeeeeeeeeeeeeeek am going to get the receptionsist to fax the results thorugh to me this pm and no doubt will be on here needing help with the experts LOL.  As my dp was not with me at the consultation i was sent home with tubes to have bloods done and to courier them.  The bloods are LAD, and DQ alpha ( what are these for)  we havent managed to do them yet because dp wasnt around and also royal mail has been on strike so am sort of waiting for that to setlle but am hoping to get them done on Tuesday.  Am so nervous about my results.

Sx


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## lalaby123 (Sep 21, 2008)

i'm only 6 dpc and mine has also kicked in so Jofie I know how you feel, i have already suddenly overnight lost all positivity and hope and think its all a waste of time and money so I know by the time I get to your stage I will driving my husband and my self crazy.....anyway wanted to wish you luck and patience for the next few days I haven't got any words of wisdom to offer at present as am not in good place myself all i can say is try to distract yourself as much as you can and go for nice walk or something that will clear your head of any negativity all the best and here's hoping you will come on here soon with some good news which will cheer us all up and give us hope    xx

Saffa, we'll wait to hear your results later today, good luck xx

love to everyone else hope you are all well xxxxxxxxxxxxx


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## Jofie (Aug 7, 2008)

Lalaby - thank for responding. I really appreciate the support. Sorry to hear you're feeling low as well - I hope things get better for you.  

Sorry to be such a misery - hope everyone else is having a better day.   to all.


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## niccad (Apr 28, 2009)

Jofie - I think it's really usual to lose all symptons. Look at Pinpin's posts during her 2ww. She was convinced it hadn't worked as all symptons had gone... In fact she said she was 99% sure ... and now she's busy growing a lovely bump which perhaps 2 in there...   
Lalaby - hold in there. You're bound to have a load of ups and downs. I'm sending loads of PMA your way       

 to both of you
Nic x


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## mag108 (Jun 28, 2008)

lalaby123: It's a tortuous journey, no two ways about it. its also so hard to analyse PG symptoms or lack of because its all so different for everyone. All I can do is send a big hug and to say hang on in there. Until you test there is really no way of knowing.  big hug 

Saffa: good luck with the test results. It took a couple of weeks for me to come to terms with the fact that I will need LIT and IVIG but I am ok ish about it now. big hug 

Jofie: So sorry that this is all so tough. I just said to lalaby123 that pg syptoms/or lack of, are such a mixed bag and dangerous to use as forecast. Most people dont really get any til at least 3-5 wks in. Hang on in there (easier said than done).
big hug 

SarahH: really hope the meeting with cons goes ok on Friday

Donkey: good luck with LIT. Be good to hear how you get on with Dr A.
I may be right behind you


xxx to everyone. Had my phone consult with Dr G. IVIG and LIT, only what I expected.


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## deegirl (Jan 17, 2009)

Hi to all
Had my appointment on Monday with Mr G, he's such a lovely man and very thorough, I'm so glad we went to him.  My husband and I had blood tests (LAD etc) so now we await the results.  Dr G will be away soon until the 22nd I think so I guess I'll have to wait until after that to get the feedback.  Thanks to those of you who gave me directions, advice etc.

Lalaby and Jofie, hope you both get your positives soon.  Diane, how's things with you?  

Dee


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## Diane72 (Oct 29, 2007)

Hello All,

Deegirl, glad you had a good appointment, good luck with the test results

Mag, glad you have a pathway forward for treatment. Thanks for the blog, I read it and it really helped.

Jofie,   Symptoms really mean nothing,  I know plenty people with BFPs who had no symptoms, however I know how hard it is not to obsess over everything during the 2ww. Sending you  

lalaby, the 2ww (or 4ww as I call it in my case!) is sooo frustrating. I feel like I am still 'waiting' to hear my result too as I know with such a shakey start and my history I could start bleeding anyday and more than likely some time in the next few days to two weeks. Sending you lots of     

Saffa, good luck with the results, knowing is the first step.

Trublood, good luck on Thursday

Sarahh, thanks do much for the  , it is appreciated

Donkey, glad you managed to get the LIT booked in

Niccad, Shelley, Cozy, Sobroody and everyone else, sending you hugs! 

As for me, my hcg was much better today-100.8, so it doubled, but I know that after such a shakey start and my history it could all go wrong but has given me back some hope for a miracle 

Diane x


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## Bettysjourney (Jun 11, 2007)

Hi Nix

Just saw your news on Berries thread, great news about your follies my lovely.
Oh please let this be your turn hun - I'm really hoping for some good news - you deserve it.  

Love
Betty xx


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## bluprimrose (Sep 1, 2009)

diane -      your hcg keeps going up...  i know this must be a really anxious time for you and am thinking of you.

and sending loads of luck and     to every one on their 2ww or about to embark on it.  

sorry for lack of personals.  am multi-tasking!

bpxx


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## mag108 (Jun 28, 2008)

diane- really glad for you with your hcg. I know how it is, getting + pg once there's been a m/c is such a mixed bag of emotions. We all deserve medals for what we put ourselves through i honestly believe that. Most people would crumble. sending you a massive


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## mag108 (Jun 28, 2008)

ladies............Pix on the PR thread posted this article. It's about DHEA. Very positive angles on IF

http://www.centerforhumanreprod.com/about_chrupdate.html

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


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## lalaby123 (Sep 21, 2008)

Quiki from me in bed to say great progress Diane with the hcg let's keep everything crossed for you xxx


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## Saffa77 (Feb 6, 2008)

Ladies eeeeek would like your help before I speak to doctor today at 1pm

Here is my NK assay
50:1 - 11.4
25:1 - 5.4
12.5:1 - 2.6
IgG Conc 12.5 50:1** - 14.1
IgG conc 12.5 25:1 - 8.2
IgG conc 6.25 50:1 - 12.9
IgG conc 6.25 25:1 - 9.2
%CD3 - 88.6
%CD19 - 8.6
%CD56 - 2.9
% CD19+cells, CD5 - 11.6

NK assay with Intralilpid
5o:1 with intralipid 1.5mg/ml - 5.3
25:1 with intralipid 1.5 mg/ml 2.2

Will i need intralipids instead of IVIG

TH1:TH2 Intracellular cytokine ratios
TNF-a:IL-10 (CD3+CD4+) 24.0
IFN-g:IL-10 (CD3+CD4+) - 12.0

These seem to be fine as I see they within Limits?

Anti histone antibodies negative

MTHFR c6677t Mutation (positive heterozygous) ? should I worry?

Thanks for you help ladies.

Sx


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## bluprimrose (Sep 1, 2009)

hello lovely ladies 

Hope you're all well.

I wrote a very long post last night which i've just realised didn't post - aaarrrggghh!  So here i go again - but from my phone which isn't easy!

I too need help from you knowledgeable ladies please - my head is spinning with confusion and decisions - and that's before i've even had all my immune tests back!  I know that when i get them all back i will have a lot of decisions to make as i will have conflicting advice from different consultants.  My main consultant doesn't believe in IVIG etc. at all.  For my last 2 cycles i took aspirin, clexane and prednisolone but had had no immune tests done.

I have had some results back from one consultant who has told me to take high-strength folic acid (5mg) because of my MTHFR result, and also to use clexane from day of ET because of another result (i use clexane anyway), and to take 150mg of aspirin only if i get a bfp (i usually take 75mg from day of baseline scan, so that's my first worry - which to do). 

What's your experience with aspirin and how much to take and when?

I have an appointment with mr gorgy wed so will of course know then about what he suggests for me.  
May i ask, when in your cycle do you have IVIG, intralipids and humira?  I am starting down-regging on the 13th so am anxious to get it all right and in time.

Think that's all for now, bit will probably think of loads more questions once i press post!

Thank you so so much in advance for your help.

bpxx


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## Jofie (Aug 7, 2008)

Thank you to everyone who sent me much-needed positive messages yesterday.  . I know it's previous to assume the worst and I'm not quite in such depths of despair today - trying to tell myself that maybe I wouldn't get the same symptoms as last time because of the prednisolone, clexane, aspirin etc. Also, I read that it's possible to have implantation cramping in one pregnancy and not in another.

Diane - so happy to hear you're numbers have doubled. Sending you lots of    to keep them going in the right direction. 

Saffa - wish I could help with interpreting your results but I'm afraid I don't know what all the numbers mean. I had my tests done at different places and a while ago and all the information has long since disappeared out of my head  .

bluprimrose - I am homozygous for MTHFR, and I'm supposed to take the high-strength folic acid - but I don't and this is why. The doctor I go to for my thyroid problem (Dr Mouton at the Hale clinic) told me there is evidence that the artificial form of folic acid which is in all the supplements in this country (and from the NHS on prescription) can build up in the body because we can't deal with it as well as the natural form (called Metafolin but is not available in this country). He tested me (he tests for EVERYTHING  ) and my folic acid was way high and this can apparently increase the risk of certain cancers. So, I ordered Metafolin off the Internet (Solgar brand) - imported from somewhere in Europe and I take 800mcg of that each day. Because I'm getting regularly tested to make sure I have enough, I'm not worried. Same with the B vits. I don't think it's a good idea to have an imbalance in either direction, and seeing as I'm paying through the nose for all these tests, I might as well use the information! 

Dr Gorgy started me on clexane from day 7 of stims. 40 ml for 2 weeks, then up to 60 ml. 

Aspirin- he told me to take 75mg every day - like you already do. You can discuss with him if you should increase it if you get a bfp. 

I had two IVIGs during stimms. I am allergic to eggs and soya so can't have intralipid. I had my NK cells tested with both steroids and IVIG and they reduced more with IVIG so I do believe it's worth it for a relatively tiny risk. I think some doctors make decisions based on cost as much as what is right for the individual patient - Dr Gorgy, thankfully, is not like this. He will let you make up your own mind, but he will suggest everything he thinks could improve your chances. 

Humira should be before cycling, although IIRC Dr Gorgy says it's OK to take it while stimming. Others will know better than me - it's a few months since I had it. But it doesn't work for everyone - did nothing for me and was a waste of money. 

Hope this is useful. 

Jo.


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## Diane72 (Oct 29, 2007)

Saffa, Your NKs etc. look OK to me, but do take Mr. Gorgy's advice. For the MTHFR (I am also heterozygous as are ~ 40% of the population) I am taking 5mg folic acid (over 10 times the does in normal pregnancy supplements) along with B12 and B6. However, Jofie I may order some Solgar if you think it is better, I'll read a bit more.

Bluprimrose, I do know how it feels trying to take conflicting views and make the right decision. I personally disagree with your main consultant, steroids simply aren't enough for some people. I would definitely go with Mr. Gorgy's reco. on immune treatment. Also I am MTHFR heterozygous and do take the 5mg folic acis/B12/B6. I started clexane 40mg  1 day before ET (aswell as my other medications). 

Re:aspirin, this really is a big debate and I can't give you advice as when I did a Medline search I got back studies that show opposite things, some saying it could increase risk others saying it could decrease risk of miscarriage. Care strongly believe that it increases risk and don't put you on it, ARGC think the opposite and put you on 75mg. This time I'm not on aspirin at all as I reasoned well last time I miscarried despite having IVIG/clexane/aspirin/prednisolone/gestone, but I truly don't know the right answer. All I can say is get Mr. Gorgy's view too.

Care gave me intralipids during down-regulation and on Day 6 of stimulation. I ended up having LIT after ET  but only because Paul Armstrong was on holiday the week before or it would have also been Day 6, then I had IVIG the day of BFP. However, I did post on Geoff Sher from SIRM's website and he reckons that 7-10 days before transfer is the most important time for IVIG / intralipids, which is similar to Day 6, which I believe is Mr. Gorgy's view too.

I hope I haven't confused you more, but there are a lot of views out there, I think no-one really knows what is the best for a specific individual as we are all individual complex physiologies, at the end of the day we just need to take all views and make the best 'informed choice' we can and then hope for a miracle  

Diane


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## Diane72 (Oct 29, 2007)

Jofie, also meant to send you   too!

Dx


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## bluprimrose (Sep 1, 2009)

Diane - thank you so much, you are amazing.  Am currently on a bus and on my phone but i'll print out and digest your info as soon as i get a chance.

I think i will not take aspirin this time (is it mr g's opinion as well not to take it until you get a bfp?).  I have only been told to take 20mg of clexane so far and been told not to take prednisolone.  Phew, it's mind-boggling isn't it?  

I have just been to the doc's to request a prescription for 5mg folic acid - do you think i should take extra b vits too?  I take a multi-vitamin with iron every day but stop it during tx.

My job's so full on that i just don't have the time to research everything as thouroughly as i'd like - it's a full-time job in itself.  I hope i've got time to act on what mr g says as i'm starting down-regging 2 days after seeing him and i know he's away the following week.  Does he do IVIG etc. at his clinic?  Can someone do it in his absence?

Sending you hugs and hope things turn out well for you.

bpxx


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## Jofie (Aug 7, 2008)

Thanks Diane 

If you do decide to go with the natural form of folate, the name to look for is METAFOLIN. I just found this short article which is quite informative - glad to know it's now been EU approved! http://www.nutraingredients.com/Industry/Merck-s-Metafolin-receives-EU-approval

bluprimrose - just to confirm, I had my IVIGs 7-10 days before ET as well.

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


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## Saffa77 (Feb 6, 2008)

Thanks ladies - realised I am still awaiting my results for LAD - so another worry.  But does it look like I wont even need Intralipids though as my NK's are below 15

Sx


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## bluprimrose (Sep 1, 2009)

another question please.....

does anyone have nk tests/immune tests and get told they do not need ivig or intralipids etc.?

it seems like if anyone in the population had the tests they would be told to go on something!

bpxx


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## Saffa77 (Feb 6, 2008)

That is a very very very good question blueprimrose!  I only went for these tests because I have endometriosis not because I have had M/C etc.  I am a poor responder.  But also wonder if ANYONE who did these results are bound to be out a few %'s here and there?  Do you only get prescribed IVIg or Intralipids if you are way out?? That is what I dont understand.

Sx


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## Diane72 (Oct 29, 2007)

Hello,

Just to say I had 'borderline' NKs when I first tested at ARGC and they did not reco IVIG (they don't do intralipids) as they thought steroids would be enough. However, after subsequent miscarriages my NKs got higher and that is when I did get recommended IVIG. So yes you can test and be told you don't need it. The decision of 'what is sufficient' will depend on your history i.e. if you have had multiple miscarriages and have tried steroids alone then its likely its worth doing intralipids/IVIG on top, whereas if you have had no prior issues you may not be recommended anything or just steroids.

There really is no one size fits all, each individual case has to be assesed on its own merits

BP, they normally advise you take B6 and B12 along with folic acid, as I believe taking more of one can cause a defficiency in the other if not balanced correctly. Yes, Gorgy does do the intralipids himself but Healthcare at Home can do it if he writes a prescription if he is away-check with him.

Jofie, thanks for the info.

Right better I must get back to work,

Diane x


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## bluprimrose (Sep 1, 2009)

Hello again

Thank you Diane for all your info.  Would be worried about healthcare at home doing it (not quite sure who they are but can guess!) as mr g is just round the corner from my work and i really can't take time off.

In fact i just popped in and have my nk assay results!  I have no idea what it all means, maybe you can help if you have a min please?  My th tests aren't back yet.

NK assay (% killed) panel:
Name: 50:1, result: 7.5% *
25:1, 5:0%
12.5:1, 2.3% *  
IgG conc 12.5 50:1, 4.7%  **
IgG conc 12.5 25:1, 4.3%  ** 
IgG conc 6.25 50:1, 7.4% **
IgG conc 6.25 25:1, 5.2% **
%CD3, 88.1% *
%CD19, 1.0% *
%CD56, 9.4%
% of CD19+ cells, CD5+, 1.0% *

phew!

Everything with an * is outseide the 'limits' and everything with ** is >10% reduction in killing at each effector/target ratio.

Anyone speak this language??! (diane?).

Thank you thank you

bpxxxx


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## bluprimrose (Sep 1, 2009)

Jofie - just saw your post, thanks so much.  Am on my phone and it's hard to read everything properly!
  Will be reading, printing and digesting all as soon as i can get to a computer that's not at work.

Thank you again for everyone's invaluable help, advice and support.  This is a hard journey for us all, but with no partner it's you girls who i discuss my choices with. 

Lol

bpxx


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## Saffa77 (Feb 6, 2008)

Ladies thank you for your input. 

I just had a phone consult with Dr G and he recommends that I take.

Steroids - 5-7 days before treatment (would these be prednisolne?) and do I take them throughout if I were to get a bfp?
I need clexane - which 40mg to start with then 60mg right till 31 weeks if I get BFP
Progesterone - 1 injection and 1 pessary after ET - am confused as will be taking my progesterone anyways as I am doing donor egg cycle.
Baby aspirin - 75mg and folic acid ( dont know which dose)
and maybe 1 x intralipid 

eeeek and this is all and needing to do my LAD still waiting for those results hope nothing bad as LIT sounds sooooo complicated!!!


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## Saffa77 (Feb 6, 2008)

Ladies sorry head is all over the place:

Is it safe to take baby aspirin?  and how much is 1 x intralipids?? and how much are clexane injections?  HELP?!?!?!


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## niccad (Apr 28, 2009)

Diane - great great news about the numbers doubling. When are you testing again? Seems like the worry never ends. I stupidly thought this was just a load of hurdles to get to a bfp but I'm slowly realising that that's just the start. One hurdle at a time for me though.. intralipids tomorrow am. Anyone else going to be there then?

Saffa - baby aspirin is fine. DrG told me to start taking it straight away too. The clexane and prednisolone cost me about £130 for 4 weeks worth. I thought the prednisolone was too about 16 weeks but someone else will be along soon to tell you (I haven't thought that far!). Intralipids cost £350. On the progesterone side most clinics get you to do the pessaries. DrG suggests gestone injections on top of that. LIT with DrArmstrong isn't complicated but it is expensive... Good luck xxx

hi everyone else - sorry for lack of personals.. 
nic xx


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## Saffa77 (Feb 6, 2008)

Niccad

Thank you and good luck for your intralipids tomorrow.  How long does it take to have it done?  £350 is not too bad - way better than IVIg PHEW.  Thank you for the prices for Clexane and steroids together.  I know clexane you take until 31 weeks but what about steroids are those only taken before ET  sorry if my questions sound stupid just all new to me!  How much is clexane on its own?

Sx


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## bluprimrose (Sep 1, 2009)

Hi saffa - i keep posting but my posts keep disappearing!  I think it's my phone.

I get my gp to prescribe clexane and prednisolone for me, so it's just the price of a prescription!

Good luck

bpxx


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## Saffa77 (Feb 6, 2008)

Hiya

Bluprimrose - really?  how did you manage that from your GP?  do you just say that you were recommended them?  Dr G is going to send me a script in the post for them so will try GP - wow hope its that easy - anyone else got theres from the GP - also how long do you take your steroids for?


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## Jofie (Aug 7, 2008)

Just got back from lunch with a close friend who told me she is 7 weeks pregnant. Have been expecting it since they got married in July and I'm happy for them of course, but jeez louise, how typical is that timing?  

Anyhoo...

Saffa - my opinion is that it is safe to take baby aspirin, 75mg a day whether cycling or not, and through pregnancy. Anything to make my blood less sticky!

Steroids - prednisolone 25mg a day from day 7 of stimming - if you get a BFP up to 12 weeks is the norm, I believe. 

Can't believe clexane is up to 31 weeks! I think I knew that but had forgotten. I'm running out of unbruised skin already and it's only been 3 weeks. Not that I'll complain if I get a BFP. 

I also have managed to get the steroids and clexane from my GP (so far anyway). I got lucky with the doctor I asked! Now it's on my record which helps - so if they refuse next time I'll kick up a fuss. I think maybe they are persuadable if you explain what you've been prescribed it for and go armed with all the facts. After all it'll cost the NHS a lot more if you have to go into hospital for a miscarriage than the price of the medication. 

Intralipids / IVIG take up to a couple of hours with the hanging around. You get one big bottle and one smaller one and it really depends how quickly it drips in. My first one took ages, but the next was much quicker.  

I do think it's likely that if more people going for IVF were tested then more immune issues would be diagnosed, but most people don't get that far for whatever reason. When I had LIT with Dr Tsgaris in Athens, he told me that as we get older, we pick up more pathogens and our immune systems adapt and produce more antibodies to different things. I may have have had immune problems since I had an ectopic 9 years ago. Who knows - maybe the blood transfusions did something... I got an infection after that, and was sick for a long time and needed several surgeries. I also have anti-thyroid antibodies - no idea when that started or how long ago and whether it has something to do with my raised NK cells and TNF-alpha...or what role the MTHFR plays in all of this. Not forgetting needing LIT! 

So my rambling point is that it's all very individual, but I really don't think Dr Gorgy would over-prescribe on the immune treatments - he's just looking at a lot more specific information than most. It's up to us if we decide that IVIG is worth the money! I made my decision based on my test results and because I have a completely unscientific hunch that my body responds more to blood products than drugs!


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## Diane72 (Oct 29, 2007)

Hello All,

Jofie, Bluprimrose, well done on getting the drugs from your GP! I'm impressed.

Saffa, I can't say aspirin is definitively 'safe or not safe' as the evidence seems to be mixed. However, what I would recommend is go with Dr. Gorgy's advice, which will be based on your individual case history and therefore weigh up the benefit:risk ratio of every medicine he recommends to you.

Niccad, my next HCG is on Saturday- I'm praying it has increased significantly

Bluprimrose, you don't have raised immunes, I think some of the * are referring to you being below lower limits, with the exception of CD3, which Mr. Gorgy told me not to worry about.

Hope everyone else is well,

Diane


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## niccad (Apr 28, 2009)

why is my GP so mean??


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## Diane72 (Oct 29, 2007)

and mine   , might have a second go though!


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## Ourturn (Oct 8, 2008)

Diane & Niccad - find another GP! 

I get my steroids & heparin from my gp. She was a bit iffy about prescribing steroids, but as soon as I gave her a letter from Dr Q recommending them she has been happry to prescribe them ever since. Think GP's need to cover their backs, as its seem as 'risk/experimental' by the nhs. 
If you provide a prescription from Dr G I can't see why they wouldn't prescrive, escpecially the steroids as they are very cheap

Anna x


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## bluprimrose (Sep 1, 2009)

dr diane ;-)

so what's your prognosis for me? do you think i'll be told i don't need ivig, intralipids or steroids??

thank you

bpxx


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## bluprimrose (Sep 1, 2009)

dr diane ;-)

so what's your prognosis for me? do you think i'll be told i don't need ivig, intralipids or steroids??

although i haven't got the th results yet - could they indicate that i may need ivig etc.?

thank you
very much

bpxx


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## lalaby123 (Sep 21, 2008)

hi ladies
its been busy on ere today ey? i have been back at work first day so had my head deep in it. 

I think Saffa and BP you have got your all your answers if any remain please shout. It doesn't look like either of you have much NK issues. If your NK's activity or numbers are not raised and your cytokines are not raised then you won't need ivig/intralipid. But sometimes ladies have normal NKs but high cytokines which  means they need Humira and Ivig. 

BP is that all the test you had? what about your cytokines, etc?? As for your cycle i had to start clexane and pred on day 5 of stims and ivig on day 8 so everyone is different you need to see what Dr G says 

As for GP and prescriptions i didn't even give mine a choice, I took Dr Gorgy's prescription and I left it with the receptionist saying I need this converted to an NHS prescription and two days later picked it up  I would try this tactic if nothing else works. And since then i just ask for repeat prescriptions.

Niccad, good luck with first intralipid, its nothing to worry about unless you are needle scary as Dr G does yack it in but after that its a breeze. take some food and drink and read mags and chat to the girls.

As for me ladies, I am 7 days past EC thought I felt some implantation resembling feelings over night so woke up in a good mood HOWEVER i have since developed cold sores, a fever and a rough chest and ofcourse having read Dr Beer's book i am thinking that its all a sign that there's a war zone in my uterus as my body is trying to reject the implanting embryos poor little things......i know its not a good sign 

Just to give me some hope has anyone who has had a BFP got cold sores or flu during the 2ww and still got BFP 

Good luck to Diane and Pinpin on next blood test

hi to everyone else xxx


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## Diane72 (Oct 29, 2007)

Bluprimrose,

I'm not a 'medical' doctor, nor a fertility expert (my Phd. is in Diabetes research so if poor glucose control is your issue, I'm much more qualified to talk about that!). So Mr Gorgy is definitely the man to give you a professional opinion. 

However, if you want a 'lay-person's/ patient perspective' thoughts,

Firstly are you currenlty on any immune treatment/recently been on treatment, if not NKs may not be your problem. There are a wide range of issues that can lead to BFNs/miscarriages and you may not have hit on the right issue yet. Have you had other tests other than those you list below?

Here are a few things to consider/that I have been considering or have tested including, 

Genetic
- karyotyping of you and DH (checking your genes)- if you haven't done this I definitely would
- CGH on eggs/embryo to check chromosomal quality (I had hoped to do this, this round but didn't get enough eggs)
- DNA fragmentation assay on sperm to check chromosomal quality (we will test this if we m/c again)

Hormonal
- Thyroid function
- Insulin sensitivity
- Progesterone (test this while going through the treatment ARGC discovered I am much better on gestone injection than the pessaries)

Womb lining
- Sometimes the lining is too thin you can take viagra during stimulation and oestrogen afterwards to help thicken it up (I am on both)

Thrombophilia
- There are a whole host of sticky blood/clotting issues that can be tested e.g. Anticardiolipins, Factor V Leiden, Protein S, Lupus anti-coagulant, thrombin/prothrombin time, Clauss Fibrinogen etc.
- MTHFR
- If Mr Gorgy hasn't done the thrombophilia panel with you yet, he may do that next

More comprehensive immune testing
- I'm not sure if below is the only immune testing you have done but there are more tests including DQ-Alpha/LAD, cytokine ratios (which maybe you are just still waiting for results for/have already tested?), Histone antibodies, Thyroid antibodies, ANA, DNA antibodies, uterine NK cells. If you haven't read it there is a comprehensive list under the Immunology thread.

Infections,
- There are also a whole host of infections that can cause fertility issues, so make sure you and DH have had a full sexual health assessment. A friend of mine found she had chlamidia and after 30 days of antibiotics, she and her DH conceived after several failed rounds/miscarriages.

So in a nutshell, if you want my opinion, more tests may help you get a better picture of whats going wrong, hope this helps,

Diane x


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## Diane72 (Oct 29, 2007)

Lalaby,

Our posts crossed. I might try that tact with my GP!

Have you had immune treatment his round?

Diane x


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## lalaby123 (Sep 21, 2008)

Hi Diane yes u I've had the lot ivig intralipid aspirin clexane steroids


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## Toffee Girl (Mar 20, 2009)

Hi All

So sorry not to have posted for a few weeks - we whizzed off for ten days to Dubai and the GP in Abu Dhabi - now back in the land of the living (well almost).

Congratulations to all those with new BFPs - so exciting!

Diane - I hope you don't mind me asking but I went in to see Dr G yesterday and grilled him over the risks associated with Intrallipids.  I read somewhere else that intrallipids are not good to take if you have a predisposition to diabetes.  My brother was recently diagnosed and my mother was a late -onset Type II diabetic, plus I was borderline gestational diabetic when pregnant with my DS.  Have you come across any info on this debate surrounding intrallipids in your line of work at all?  Would be great to have an expert view.  Dr Gorgy thinks that it should not be a problem taking it.

Sarah, Cath and all - hope you are all doing ok.  Cath - a visit with the midwife - wow its all very real!

Take care all

Toffee Girl x


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## Rachel2 (Oct 3, 2004)

Hi ladies - sorry to gatecrash but I need some hardcore expert steroid advice!! Tomorrow I am having my last ever ec. You can see from my sig that I have a dd conceived thru iui on 2004 - but am struggling ttc no 2. I had endo biopsy by Dr Quenby in LWH, and was found to have significantly raised uNK Cells. I will be on pred and aspirin this cycle - but want your advice as to when to begin the steroids. I do have some spares. I think my clinic will tell me to take it day before et ( I want to go to blast) but from what I have read I am tempted to begin tomorrow after ec. Also - if I wanted to up my dose around implantation, when would I do this and how much should I take? As this is our last go I will try anything. I haven't had all the immune tests done so I just have to work with what I have got! Thanks x


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## Donkey (Nov 24, 2007)

Evening

Diane, fabulous news on your hcg results, although I understand your caution.      

I'm just waiting at the moment for LIT and my tx to start ...  all very nerve racking.  

love to you all

xx


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## Pinpin (Nov 4, 2008)

Hi girls

Sorry i have not posted for a few days I've been back at work since monday and finding it hard to get as much time to post as i can't 
the website from my computer at work but I do read throughout the day from my blackberry to keep up with everyone's news 

Diane - I am sooo pleased that your levels have more than doubled since monday it's a good sign and I   that they carry on doubling like that for saturday's blood 

Lalaby - try not to read too much into the symptoms you are getting. The first thing I said to Dr G on the day i went to see him for my first HCG blood was that I was convinced it hadn't worked because i had felt my body fighting something for a few days and that i was getting my pains in my knees that I usually get when my body fights something and felt like i had a virus. He smiled and said well maybe your body was fighting for a good cause...  I am   for some good results for you

Saffa - your results don't look too bad at all   

Niccad - good luck for the intralipid tomorrow   wear something warm as you're going to get a cold arm  

Rachel - Dr g gets his patients to start on steroids during stimms. Maybe you could email Choice4 she might know what to do.

Jofie and Primrose - like you i managed to get my clexane and prednisolone from my GP but she couldn't give me the gestone. Nic maybe you could move to my GP as you're not far from me!!

AFM - back to work for 4 days and trying not to get too tired by it, i'll be workin gform home tomorrow and then on holidays next week for a week of doing nothing in a nice hotel in Portugal. My HCG on Monday had more than doubled since the Friday from 411 to 984 so Dr G said there was no need to carry on monitoring them. Now booked in with him for the 6 weeks scan in 1 week time on saturday the 14th nov. We're also awaiting for the retest of our LAD which we had to redo yesterday because the lab had managed to get the first lot to miss the plane when we did the when we got our BFP  
I am   for our BFP to stick and now waiting for LAd retest to come back and first scan  

Hi to everyone I haven't mentioned 

Lots of love to all

Pinpin x


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## Diane72 (Oct 29, 2007)

Hello All,

Wow Pinpin those levels are tremendous, I reckon there may be two in there   

Rachel, I took 10mg prednisolone from Day 6 of stimualtion then increased it to 20mg 2 days after EC and the up to 25mg on my BFP day.

Donkey, good luck with the LIT!

Lalaby, you've had the whole shebang then of immune treatment so hopefully all should be fine 

Toffeegirl, Diabetes is not 'absolute' or 'black and white' physiologically, there is a 'threshold' that is *defined as diabetes * but it doesn't mean that if you are just under that threshold that you are fine, you basically have a continuum of poor glucose control and if something raises glucose very slightly then if someone is right on the border of what is 'officially defined' as the threshold for being labelled as having diabetes, some would say it has 'made you diabetic', but in actual fact physiologically there is not much difference between being pre-diabetic on one side of the the threshold definition vs. diabetic on the other side. I don't know the evidence around intralipids but one thing to look for is in studies where diabetes issues may have been detected it may well be intralipid infusion was over prolonged periods of time, as opposed to the occasional infusions we have, so you really can't transfer conclusions. I really don't know the evidence though, so really can't advise. If you are prone to diabetes there is evidence steroids can increase insulin resistance, but you have to weigh up your own personal benefit:risk i.e. do the benefits outweigh the risks for what you are trying to achieve, this is a personal decision. I note someone has asked about this on Geoff Sher's (SIRM) website on Aug 14th so you may want to go on there and see what has been posted.

Hugs to everyone else, 

Diane x


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## Peanuts (Apr 29, 2007)

Phew, finally managed to catch up on all the posts!  Been really busy at work and out in the evenings so this is the first cahnce I've had to log on since the weekend.

Diane - really to pleased tha tyou numbers have doubled, and keeping fingers crossed for you on Saturday    

Pinpin - wow great numbers too.  Have a fab holiday and good luck for your scan


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## Peanuts (Apr 29, 2007)

Oops - got a new keyboard and managed to post my last post without finishing!

Had phone consult with DrG on Monday and he's recommended Humira, LIT, Gestone and perhaps Intralipds for high CD19CD5, but will decide on that closer to the time.  Need to get MTHFR redone as didn't get the bloods through in time.

Sounding a bit scary and taking a while to get my head around things.  Can you help answer a few questions I never got the chance to ask.

LIT - what were the side effects you had with LIT?  Would be good to know what I'm in for!  Whats the process? Does DH need to go with you to give blood to use?  I'm hoping to have txt about Feb time, but I see DrA is booking up already, should I make an appt asap or wait until closer to the time?

Humira - how many injs should I need and when do you need to take this - b4 txt?  Again what are the side effects?  Sounds a bit scary?!

Intrilipids - he only said maybe to Intralipids, but is it worth going for it anyway?  Thinking about trying to through everything at this cycle!

Jofie & Lalaby - keeping fingers and toes crossed for you in your 2ww     .  I like Pinpin's advice about your body fighting for something, so hopefully the immune txts are doing their thing!  

Big hugs to everyone - need sleep, but will try to catch up properly over the weekend
Dxx


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## Pinpin (Nov 4, 2008)

Peanuts - I had my LIT with Dr A and yes you need you DH with you to give the blood as Dr A does not offer donor LIT.  He takes your DH blood in the am and then it gets sent to the lab to process and keep just the white cells and then he injects them into your arm early pm (1 injection in the vein and 4 small under the skin). I found it quite painful as I don't like needles but appart from a sore/swollen/lumpy/itchy arm for a few days after treatment I didn't get any other side effects.

Re-humira I think your level of TNFa were around 34 in which case I think Dr G will recommend you do 2 injections as that should be sufficient to get you under the 30 limit as you're not far off. I had 3 injections of humira and only side effect was stingy at injection site for me but I know some people get sore throat, flu like symptoms.

On intralipid I would follow Dr G's advice as he would only recommend it if he thinks you need it but if he thinks you don't then you probably don't. He is not one to take chances, he is too thorough for that and that's why we like him so much  

Good luck... right gotta do some work, I'm working from home today but haven't even logged onto work laptop yet and not even showered or dressed!  

Love
Pinpin x


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## super9 (Aug 5, 2008)

Hi All

I hope you wont mind me joining in. Do any of you know if NK cells can become activated in the later stages of pregnancy? I remember reading quite a while back that sometimes NK cells can become activated around week 24 upwards. I ask becos I can't afford the follow up Nk blood test Mr G always insists on after an infusion of intralipids/ IVIG and was wondering if it is the case that NK cells can become activated at around 24 weeks .

BTW Toffegirl it was me who posted on the 14th of August to Dr Sher re diabetes, blood clotting and Intralipids/ IVIG. I was told by Catherine Nelson-Pearcy one of the the most reknowed Obstetric consultants in the UK that Intralipids causes diabetes in one who is pre-diabetic or has a predisposition towards diabetes through PCOS, being overweight or through steroids taken in high doses over a period of time, and IVIG is prothrombic and both should be avoided. I therefore wanted to know what Dr Sher thought. I did put this discussion to Mr G who confirmed that Intralipids can raise blood sugar levels and that in that case one with gestational diabetes should test their sugar levels after an intralipid infusion and increase their insulin medicine if necessary. As for IVIG Mr G confirmed there is one cited case of IVIG causing clotting.


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## Saffa77 (Feb 6, 2008)

Hiya wonderful ladies

Dr G has asked me to take Folic acid - what dose should I take see you ladies mention 5mg do I need to see doctor about this?  Or can I order it online?

Sx


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## niccad (Apr 28, 2009)

Just a quick one to say good luck for tomorrow Diane.. I hope those number have nicely doubled  .

I had the intralipids today. After a bad reaction to LIT I had got myself in such a state over everything that I was overlly worried & probably walked in there like a rabbit in the headlights. The only bad thing is was a cold arm (thanks so much for the warning Pinpin - was dressed warmly as suggested). 

I hope that you all have great weekends...

Nic  x


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## wee emma (Nov 15, 2007)

hello  

how much do the immune tests cost? not that well off to be honest  

thank you


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## niccad (Apr 28, 2009)

Elizabeth... sorry to say, but I've now spent ~£2000 just on testing and consultations 
. I think if you have a good GP you might be able to get some of the tests done by them & then just the level 2 tests done with DrG. In that case NKassay and cytokines is £650, mthfr is £240, LAD is £200 and DQalpha is £200...  
I am hoping that BUPA will pay for my tests....   

Good luck x


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## lalaby123 (Sep 21, 2008)

Emma I had most of Level 1 tests done through my GP and the Level 2 tests cost me around £1000 which you can claim back if you have Bupa


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## Diane72 (Oct 29, 2007)

Hello All,

Emma, just a forewarning my health insurance AXA PPP would not let me claim anything back on the tests.

Niccad, thanks for the  , glad the intralipids went well  

Saffa, it depends on why you are taking the folic acid, if its because you have an MTHFR gene mutation yes it will be 5mg for which I had a prescription to get, if its just the normal supplementation that women trying to conceive/are pregnant should have its 400ug.

Super, thanks for the added info. this is actually quite similar to some cholesterol modifying drugs that people with diabetes take- they can raise glucose and 'tip' you into the 'definition of diabetes' but it is usually resolved by just modifyingying someone's glucose therapy slightly if needed. So its the monitoring that is key if you are at significant risk.

I booked my scan today for 14th Nov, really hoping I make it that far  

Hugs to everyone else,

Diane x


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## bluprimrose (Sep 1, 2009)

Hello all

Hope you're all doing ok despite the vile weather.

Diane, do you have another blood test tomorrow? (on train and only managed to read last post).  If so, wishing you loads of luck.  I see you're at CARE - i am on my way home from a full-on day at The Fertility Show and was so impressed by Dr Simon Fishel - so inspiring.  Are you under his care?  Although ending the day on a seminar about over 40's ttc has left me feeling a little flat to say the least!  If anyone's thinking of going i'd thoroughly recommend it.

Diane, my th blood tests are back now - although I don't have them but will be seeing Mr/Dr G wed morning.  How does healthcare at home work if i have to use it?  Is that only for ivig?  Although i don't understand the results back from my gp, they all seem to be in the normal range.

Hugs, love and luck to everyone - sorry for lack of personals but can't see any posts as i'm writing.

bpxx


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## Peanuts (Apr 29, 2007)

Hi girls

Pinpin  - thanks so much for the info on drugs   Although a bit freaked about LIT now as I'm a huge needlephob!  Will just have to get on with it I suppose! Have a fab holiday, not jealous at all!

Saffa - DrG told me to start folic acid too, I asked him what dose, and he said the normal 400ug, until my MTHFR results come back.  When you starting txt?  Hope you're getting your head around things ok.

Niccad - well done you on getting through Intralipids - how long doe sit take for an infusion?  What was the side effects from LIT?  Tyring to get myself up to speed with everything before deciding when to go forward with txt again.

Emmaelizabeth - hi hun, I just had my immune tests and paid £1350 for the tests and the consultation with DrG.  Really scary I know, but as the other girls have said you can get your GP to for level 1 tests for you first, as they might be able to pick up something easy to treat.  Good to see another NI girl hear, I'm from Portadown, but now live in Edinburgh!  Good luck with your next txt 

Diane - wishing you lots of luck for tomorrow     hoping your levels are looking good

Big hugs to everyone else, have a fab weekend.
Dx


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## bluprimrose (Sep 1, 2009)

P.s. Does anyone know what i need to say to my private health care to try to get them to pay for all my blood tests?  They don't pay for ivf per se.

Thanks v much

bpxx


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## Diane72 (Oct 29, 2007)

Hi bluprimrose,

Yes I have another HCG test tomorrow. Yes, I am at CARE Nottingham (but have been getting Mr. Gorgy's support in addition). I am actually with George Ndukwe as he is Care's 'immunology specialist' but they have lunch time meetings to discuss 'complex patients' and Simon Fishel was leading on the CGH micro-array clinical trial that I was originally going to take part in, but did not get enough eggs this round to take part in. What did his talk focus on?

BP, the reason I have HealthCare at Home for intralipids is I get it through CARE (who are based in Nottingham) and they contract out their intralipids. I arrange it through Care and then healthcare at home phone me to arrange a time to come to my house. Healthcare at home do do IVIG aswell but I had mine with Dr. Gorgy. If Dr. Gorgy is away on holiday at a critical time for you, it is an option but I don't think he is away for very long.

Pinpin, the LIT injections are soooo quick they will be over before you know it ( less than 5 mins)

Hugs to everyone else,  

Diane x


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## Donkey (Nov 24, 2007)

Diane - good luck for your levels  

Peanuts I would look into booking now as I really struggled and had to beg for an appt.

Have a lovely evening
xx


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## bluprimrose (Sep 1, 2009)

Diane, his talk was about cgh array, pgd/pgs etc.  Thoroughly amazing and he seemed a very nice man.  I got to ask him a few questions personally too which i've wanted the answers to for ages.

Not sure if my post appeared - sometimes they don't from my phone.  Does anyone know what to say to try to get private healthcare to pay for immune testing??  Thanks very much.

bpxx


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## Diane72 (Oct 29, 2007)

BP,

Just to reassure you, your post has appeared. I can't help though as my insurance company said no!

Donkey, thanks for the  

Diane x


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## bluprimrose (Sep 1, 2009)

hello again diane

for some reason i've only just seen your post to me from yesterday (at 19.07)

i think i've had most of those tests and will give them all to mr g at my appointment on wed.

for my last 2 cycles i was on prednisolone, aspirin and clexane - but had had no tests done.

would love to do cgh but never have enough embryos.

alas i have no dh - my sperm is of the frozen anonymous variety!  but i know it is not from a carrier of any chromosome problems - and neither am i a carrier.

thanks again as always for your really detailed, thoughtful posts.

good luck again for tomorrow.

bpxx


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## bluprimrose (Sep 1, 2009)

lalaby, thanks for your help yesterday - only just seen your post.

i think i've been tested for almost everything(!) - am seeing mr g on wed to go through the results.

the th results came back today but i haven't seen them yet.

thanks again    

bpxx


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## deegirl (Jan 17, 2009)

hi Blueprimrose

Just to answer your question on what to say to your insurance company, it very much depends on the insurance company as they each have a different policy.  BUPA make it very clear that they will pay for all investigations into infertility after 2 years.  So I just told them straight and they very obliging.  Read the policy before you ring to see the wording!  Hope that helps. 

Hope everyone else well.  Diane all the best for today.

Dee


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## Ourturn (Oct 8, 2008)

Blueprimrose - my policy will not cover any investigations into infertility (Simply Health) HOWEVER they do cover investigations into recurrent miscarriages, so that is how I have managed to get my appointment and tests with Dr G covered (through his partner who is BUPA registered) 

Anna x


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## Saffa77 (Feb 6, 2008)

got the script from Dr Gorgy for my meds - arrrgh head is all over the place, he now also wants me to take gestone injections!  - with needles and syringes who is going to supply me with these! so much all this! the thing is only thing that worries me is being positive for MRHTH (sp) and would be happy to take clexane but now its prednisolne, intralipids and progestreone so confusing and dont feel that Dr Gorgy has explained it all to me properly - i paid £90 for a phone consult he told me which meds to take but didnt describe for how long exactly - side effects nothing so still feeling confused, just feel that i am paying a lot for all this and some of my levels are really only like 1% over or under so nothing major - should i be on all this Will be going to portugal to have my treatment and will need to take all these injections needles and meds - can i carry on these meds in the suitcase.  Help ladies feel so overwhelmed.

I know that prednisolne you take up to 12 weeks
clexane up to 31 weeks - does one need to have repeat tests to check levels?? can i go to GP to get them done??
Gestone - how often /long do you take these?
Cyclogest - I am confused as will be on similar pessaries (urtogestan) for my donor egg cycle so do I take both?

I have only had 1 x BFN with one embie so havent had loads of m/cs or IVF failures.

Also the meds are written on a letterhead paper can i take that to GP or if he cant prescribe to pharmacy a nd they will give it to me wiht the needles and syringes etc etc?

Just dont feel i am being made relaxed and confident about all this.  Your help would be appreciated.

Sx


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## Cozy (Jul 17, 2008)

Saffa,

please dont worry and get yourself stressed, everything is easily sorted and explained  

Take your letter frm Dr G either to your GP if they will prescribe (mine wont ) if not, take it to a pharmacy and tell them that you need the needles/syringes as well. That is all you need to do.

Cyclogest and Utrogestan are both progesterone pessaries. Utrogestan are usually in 100 or 200mg pessaries and Cyclogest are 400mg. If you have one type and he has prescribed you the other, then just take what you have got, in the right amount.

Gestone is a 100mg injection. He may tell you to have an injection in the morning and 400mg pessary at night. If it is something different then just go with that

With regards to how long you take things for. I would just make sure you have enough to cover you until your OTD and a couple of days after that. You dont want to end up with loads of drugs spare. I would worry about how long you take things for when you get your BFP, just be sure you know what to take and when up to that point.

I dont know what your test results are, but personally, I would go with what Dr G says. if you are unsure about anything or are not happy with the info you got from your consultation, then phone him and tell him . Have a list of questions ready for him and make sure you get the answers.

Cozy


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## lalaby123 (Sep 21, 2008)

Saffa cozy has said it all don't worry too far into the distAnce just get all you need till a BFP I was like u but learnt to take things one step at a time i was also not happy with my second consult but told dr g and he made it up to me if I wer u I would make a list of all your questions and either call him or email him saying how overwhelmed and confused u feel this stuff is the norm for dr g he doesn't realise it is all  headspinning stuff to newbies 
I can't advise u on the meds but go with what he suggests he knows what he's doing just not good at explaining too much xxx


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## Diane72 (Oct 29, 2007)

Saffa,

As everyone else has said, really don't get worried, this is all quite normal practice. If you do have questions, just give Dr. Gorgy's secretary a call, I have always found him very reponsive.

So you know at ARGC even if you have no immune issues whatsoever, every patient gets progesterone supplementation and clexane from their first round. I was on both before having any testing done on my very first round.

The gestone injections I have been on since the first round and have found they are much more effective at raising my progesterone levels than the pessaries. Make sure the pharmacist who presciribes your gestone includes the patient information leaflet with you gestone as it explains step by step how to do the injection. You need 2 ml syringes and 'green' needles for the gestone, which you should ask the pharmacist for. It is helpful if your partner/ a friend can do the injection as I have found it is least painful if you do it in the upper outside quadrant of your   and numb the area slightly with an ice cube first.

Re: the prednisolone/intralipids relatively to the cost of other treatments (e.g. IVIG) they are not too bad and if it gives you an extra 'safety net' it isn't necessarily a bad thing. In my second round I was only 1% over the norm on my NKs and only took 10mg prednisolone, I wish now that I had done something more comprehensive. In retrospect, a comprehensive treatment strategy right at the beginning may have stopped me going through the pain I have and would have cost alot less in the long run (believe me a whole new treatment cycle costs alot more than a few extra medications). However, if you are feeling uncomfortable then do raise your concerns with Mr. Gorgy and and ask his rationale, I'm sure he'd be happy to discuss it with you further.

As others have said yes you can use the letterhead to obtain your prescription/needles etc. also the prescription will say on it how many of each thing the pharmacist should give you. Generally as other have said, you need enough to get you to test day and a little bit further to start with and then you can take it from there getting more 4 weeks at a time as long as needed.

Hope this helps,

Diane x


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## Saffa77 (Feb 6, 2008)

aaaawwww ladies you are so sweet!! thanks for all the info and making me feel a little bit less stressed out.  I am only cycling Mid Jan so am going to just relax until then and start worrying about it all like amonth before am also praying that there is nothing wrong with my LAD because If I have to have LIT / donor LIT I am drawing the line there as just find having to go to greece etc and portugal just a bit too much but am going to try the drugs I have been given and 1 x intralipid.

Will let you know how I get one.

Thanks again ladies.  No doubt will be on here again very soon with another question.

Sx


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## Diane72 (Oct 29, 2007)

Just a quick update from, my HCG was 381, so low for 5 weeks 1 day and I need to remain cautious, but it is still doubling  

Diane x


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## Donkey (Nov 24, 2007)

Diane, my understanding is that it's still doubling THAT'S GOOD!     

xx


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## lalaby123 (Sep 21, 2008)

Diane woohoo great news re hcg doubling   what a relief go hcg go


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## Diane72 (Oct 29, 2007)

Thanks Lalaby, Donkey   I have another HCG test Tuesday so lets see how that goes........taking each day as it comes, every day feels like a year!

Dx


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## bluprimrose (Sep 1, 2009)

that's such wonderful news diane -     that your numbers continue to soar.

lol

bpxx
p.s. am out of the country for the weekend with hardly any internet access so sorry for quiet prescence!xx


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## mag108 (Jun 28, 2008)

diane: just to say that I am happy for you the numbers are doubling...Theres seems to be wild variations in numbers for hcg, but doubling is the key thing. (but I just want to acknowledge that I understand your concern, for people like us it's hard not to be until certain stages are passed)


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## Ourturn (Oct 8, 2008)

Dianne - good news   keeping everything crossed for you    

Anna x


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## Cozy (Jul 17, 2008)

Diane,

good to read your numbers are still going up, even it is a little behind what they normally are at that stage. The main thing is, is that they are going up and doubling and that is good. I   they continue to do so.    

Cozy


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## Saffa77 (Feb 6, 2008)

Diane good that your numbers are doubling - I am happy for you  

This is what my script from Dr Gorgy says:

Prednisolone tab 25mg /day from day 5 of TTT - Not sure when day 5 is sorry as I am doing egg donor so will be on decapeptyl first then 15 days later I start on estrofem to thicken my lining will it be from day 5 from when I am on Estrofem?

- clexane injection 60mg sc/day from day 5 of preparation - am presuming again its from day 5 from when I am thickening lining?

- cyclogest pessaries 400mg PR/day every night from the day of Egg collection - Ok this i understand I take this from Egg collection (when donor has collected)  The doctor in portugal will have prescribed me urtogeston whiwch is the same do I not take those?? Just the ones Dr Gorgy has given me??

- Gestone injections 100mg from day of egg collection - ok makes sense too and I believe I need to get 2mg syringes and green needles am i right?  Will I manage doing these injections on my own in my butt?? LOL

- then 5mg folic acid - which i will get script from doc.
- then 75mg aspirin which I will start tomorrow.

Thanks for the advice ladies.
Sx


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## Diane72 (Oct 29, 2007)

Saffa,

I imagine you need to do everything off your Egg donor's timings. Why don't you just call Dr. Gorgy's office and ask if they can give you the timings according to it being an egg donor (which I imagine is the same as FET).  

Re: the gestone you need your DH/ a friend to do it as you are supposed to pull back the needle slightly before plunging it in to double check you haven't hit a vein instead of muscle. My DH was a bit of a needle-phobe and hated it at first (and complained alot) but now is an expert. If you can't do that I believe the muscle in the thigh is an alternative but I've never done it and I've heard it hurts more.

Re: cyclogest, yes I would think you do one or the oter not both so phone and double-check with Mr. Gorgy which he recommends

Thanks to everyone else for all your support, I really, really appreciate it  and yes Mags it is so nice to have others that understand the feeling that the day of getting BFP is no longer the point you rejoice but instead you wait, filled with fear, to pass whatever your historical personal milestone is.

Diane x


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## Peanuts (Apr 29, 2007)

Hi Diane

Great to hear that your number are doubling - keeping everything crossed for your next test on Tuesday, and then everyday until your first milestone      

Dxx


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## Bettysjourney (Jun 11, 2007)

Hi there

Diane - I wish you heaps of luck with your betas over the next few days  

I am new to this thread but been posting on other threads for a couple of years.  I got pg with my first IVF but had to terminate due to Edwards syndrome at 17 weeks, since then I had another go with my own eggs at 42, then on to DIVF last Jan, unfortunately I have had 3 fresh and one FET since then, 2 hysteroscopies - still not PG.  I am therefore visiting Dr G tomorrow for the first time in the hope of finding some answers.  We cannot commit any more funds or emotional energy to this struggle without any stone left unturned.  I've been with Serum in Athens with the lovely Dr Penny who is marvellous and I trust completely, she routinely tests for clotting issues whereby I found out I was high risk, so I have used clexane, high dosage folic and baby aspirin.  I also had (low dosage) prednisolone ranging from 4mg to 20mg last cycle.

Here's hoping that Dr G can help out.

Hope to catch up with everyone's stories soon.

Much love
Betty xx


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## mag108 (Jun 28, 2008)

Ladies
A quick question from me re LIT . I need to get LIT sorted asap.
I was meant to start IVF in Sept but because my nat pg and m/c (and slow falling hcg) have had to wait. I may now be rushing to start at the end of December, though at a push,I could wait to begin at the end of January.

I have worked out that LIT in Athens in December will cost me £935 plus 3 days out of work.
I had heard that some believe donor LIT works better (my DH and I have 1 DQ ALPHA match but donor LIT wasnt necessarily recommended by Dr G). I know I will need to go there twice, thats nearly £2K

From what I can gather Dr Armstrong, London's LIT requires only one visit but he doesnt do donor LIT.
Before I got my immune results a few weeks back and before I was 'tuned' in to it all I got the impression that 
some preferred Dr T in Athens to Dr A in london? 

Can someone given me an honest low down on the pros and cons as they see it?

Thanks so much


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## Jofie (Aug 7, 2008)

Hi everyone,
Haven't been around the last few days as I had nothing positive to say, suspecting that this cycle had failed which, as of this morning, has proved to be the case.  . Will speak to Dr. Gorgy later this morning about what happens next. Hope you don't mind me using this thread to think through my next options. I'll probably come across as a bit clinical / over-analytical because that's how I tend to cope with the shock and disappointment, so please bear with me.

Not giving up, although will probably not have another ICSI, at least for a while. Given that my general health has improved a lot and I've lost quite a bit of weight recently, I think it might be time to try a more natural approach for a bit, and give my remaining tube a chance to do what it's supposed to. It's got adhesions, but it is open, and I suspect the problem is less physiological than hormonal / age-related and I can do something about that. I refuse to give up hope anyway.

So, thinking about doing a few cycles of IUI with acupuncture and TCM support. Then if that doesn't seem to be working, I might try Create Health's 3 cycle package of soft IVF, seeing as this cycle has proved to me that high doses of stimms are counter-productive in my case. We've also still got our one magical free NHS cycle in the bank (supposedly).

One good thing that's come out of this is that I'm pretty sure the immune treatments have been good for me. No idea if it's the clexane or the IVIG/steroids that have made the difference but I feel really well and have had little to no side-effects from the drugs.

Diane - really happy to see that your levels are still doubling.       they continue to do so.

Lalaby - not long to go now! Beaming you lots of  for a BFP.

Linnie - welcome to the thread. Hope Dr Gorgy can give you some new answers.

Saffa - I didn't fancy doing the Gestone injections myself, so made a daily appointment with local practice nurse. It was the size of the needle that put me off, but didn't find them at all painful in the end, so another time would probably do it myself now I've got a handle on how to do it. I find Dr Gorgy particularly useless when it comes to explaining prescriptions so I've done a lot of my own research. There's a really good video here for giving the Gestone in the backside: 



 I'd also recommend another of the same user's videos showing her technique for the clexane (lovenox) injections - it has reduced my bruising to almost nothing over the last couple of days!

Mag - I had LIT in Athens because Dr Gorgy recommended donor. I chose it because you do it in advance and then test to see if it works, because the idea of having one treatment and then a 'booster' 2 weeks later seemed like a good idea and because it's the protocol developed by Alan Beer with the longest track record. I found Dr T to be knowledgeable and pleasant and the traveling / language issues were less hassle than I thought they would be. However, if donor hadn't been recommended for me, I might have gone with Dr A in London because Athens did work out more expensive and took longer. Don't forget you have to factor in the cost of the re-test afterwards which isn't an issue if you go with Dr A.

Hi to everyone else.


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## lalaby123 (Sep 21, 2008)

Jofie sorry to hear this but r u sure?? was it a hpt or blood test and how many days past collection?? I am no expert in this field but out of your options I would go with the free cycle and create,s soft ivf i think with one tube with adhesions your chances of success with iui are not worth it really 
on the other hand I recommend soft ivf and after having it I would only do that again if this round fails it's quick less drugs and gentler to your body sending you hugs and glad you r not giving up hope xxx


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## Cozy (Jul 17, 2008)

Mag,

my personal opinion would be to go to Athens. I have had 2 lots of donor LIT there and was very happy with my choice.

I did alot of reading up about LIT and people's experience of it and where they went and to me there was no choice it had to be Athens.

You can do it all in a day, depending on where you live, but I did it in 3.  I flew to Gatwick, stayed there overnight, then got the 0620 flight out of Gatwick on the Tues morning and then stayed in Athens Tues night and flew home Weds lunch time. I did that both trips and I went on my own to make it a bit cheaper.

My reasons for going to Athens were;

1. I was happier following Dr Beers protocol -i.e. 2 lots of LIT and then retest to see if it has worked. I couldnt see the point of just having 1 lot and then having to arrange my own retest and then if it hadnt worked, having to go to Athens anyway for another dose.

2. I was told that donor LIT would be better for me. My DH dont share a number but we have one in the same group, which I was told would probably respond better donor with LIT. PA does not do donor LIT.

3. When I spoke to Dr Gorgy about where to go and my concerns about PA's methods and what people had told me about their visits, he agreed that it would be better for me to go to Athens.

4. Yes it worked out more expensive, but as this is more than likely going to be my last cycle, I wanted to feel that I had done the best I could to make it work and in my opinion 2 LITS were the only way to go.

5. I met people in Athens who had been to PA for their 1st lot of LIT and they were happier with the methods used in Athens, which confirmed I had made the right choice.

It is a personal decision. I know of people who have been to PA and it has worked and they were happy with his methods.

Dr T can be a bit of a nightmare to get hold of and book appts. The easiest way, if you do use him, is to email him your test results and tell him when you want to go and if you dont get a reply, email again. Also if anyone is going out there, get them to check the appt has been made for you - and if not,to get them to book you in.

Good luck with whatever you decide to do.

Cozy


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## Jofie (Aug 7, 2008)

Lalaby - it's an HPT, but an Early Response one (the ones that say you can test 5-6 days early). It's 14 days post-EC so I'm pretty sure.  If Dr Gorgy wants me to go in for a blood test today I will, of course - just waiting for him to call me back. 

You're probably right my chances with IUI aren't great, but I did conceive naturally once since the ectopic, and I'm in better shape now, so that might help. Also, my last laparoscopy (when I had the ERPC last year after 1st ICSI because they feared that pregnancy might be another ectopic) showed that the tube was still open and looked healthy enough, it was just stuck to various other bit of me! Don't think I have much to lose giving it a go as I won't be able to do IVF again straight away. I'll see what Dr Gorgy says anyway.


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## lalaby123 (Sep 21, 2008)

Jofie i don't want to give you false hopes but it could still be early i would test again in a couple of days but see what Dr G says....re iui and your tube if the adhesions are outside and not interfering with function of the tube then its definitely worth a go with iui i thought your adhesions were inside the tube in which case it increases risk of ectopic with iui - you've got lots of options anyway which is good - sending you lots of   

Mag - sorry can't help with LIT but you've had great advice anyway

Linnie - welcome onboard i hope Dr G can give you some answers

hi to all gotta dash xxx


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## deegirl (Jan 17, 2009)

Hi Girls

Mag - I may be in the same predicament as you soon as waiting for my LAD results to come back and think they will probably be negative as I've had 5 early losses now.  Athens certainly does seem to be the most popular choice.  Great information from Cozy.  Cozy just wondering what time Dr A does the treatment and how long does it take.  I think I read somewhere that he does it every other Tuesday, is that right?

Lalaby - Really hope you're doing well and that things are working out for you.

Jofie - so sorry to hear your sad news.  

Hi to everyone else.  Dr G has told me that I will probably need an uterine biopsy to test for CD57 cells in uterus.  He has said that either I can get it done with him or get it done in Belfast and post it over to him.  Is there any particular days in the cycle that this needs to be done?  Would I be ok to fly home afterwards?  I'm not looking forward to this as I know it can be painful!!!  

Dee


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## lalaby123 (Sep 21, 2008)

deegirl- i had mine done with Dr G....Dr Beer and hence Dr G suggests doing the biopsy a couple of days before your period is due so depending on your cycle length if its a normal 28 day cycle ideally day 26/27 of cycle....it is not a pleasant experience but  you do forget it afterwards so take some nurofen beforehand and be prepared for the worse so that you are not surprised....you can fly afterwards you will be spotting and feeling a little faint but won't stop you from flying......good luck and hope it comes back negative xxx


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## Ourturn (Oct 8, 2008)

Dee - I had my biopsy done in Liverpool (they no longer do it privately, only if you are willing to be in their trial...I was but couldn't go ahead when I started ivf...anyway the clock was (and is)  ticking so I could not afford the chance of being given a placebo)
Yes it was painful BUT I'm sure it would have been even worse had I not taken x2 diazapan (to relax), ibuprofen and paracetamol. But if I had to do it again I would get my hands on the most powerful painkillers I could (dh had some cracking meds for his back which helped when I was miscarrying) The actual procedure was over in seconds, I did nearly pass out and had some cramps, bit was fine within 30 mins. I had some bleeding for a day or two. No reason why you can't fly. 
From memory I think it needs to be on cd21 and you MUST not ttc that cycle. 
Anna x


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## Cozy (Jul 17, 2008)

Hi Dee,

Dr Tsagaris does LIT in Athens every other Tuesday and you need to be there for 2.30pm. The dates are 17th Nov, 1st Dec, 15th Dec, etc etc. I dont know what his plans are over xmas and new year for appts though.

I had my uterine biopsy done in early 2007, in Liverpool, but cant remember what day of my cycle it was on, and yes, it was very painful. I didnt know anyone who had it done then, so no one prewarned me to take any painkillers before hand.

Cozy


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## deegirl (Jan 17, 2009)

Thanks for all your help girls.  Might just leave uterine biopsy until the new year...sounds awful!  Not planning to cycle with Dr G until next summer.  As for the LIT I'll not worry about that until I get my results.

If I do cycle with Dr G next summer he told me that I can get most of my scans done in Belfast but will need to come over to London for the last couple and then obviously for EC and ET.  Any recommendations/ideas for accommodation close to the IVF clinic which Dr G uses??  

Thanks
Dee


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## Han72 (Feb 15, 2007)

Hi Dee

Dr gorgy's clinic is just up the road from the ARGC so you might find this link useful:

http://www.fertilityfriends.co.uk/forum/index.php?topic=87373.0

Also I know someone that rented a bedsit in Leytonstone on a short-term let, I think she found it via gumtree.com

Good luck hon

xxx

/links


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## Jofie (Aug 7, 2008)

Lalaby and Dee - thank you so much for the hugs and support - it's really appreciated. I will test again if Dr Gorgy says to (haven't managed to speak to him yet, been playing telephone tag all morning)! Really not holding out any hope though as haven't had any signs whatsoever that anything is going on. By this stage last cycle I'd had implantation cramps on day 7, metallic taste in mouth, backache, increased CM (sorry TMI), sore (o)(o) and very, very obvious blue veins everywhere, so...I know it's not the same for everyone, or every cycle (have been scouring FF for 'no symptoms and BFP' for the past week  ) but think I'm sensitive to even very low levels of HCG. I could even tell last week when the Pregnyl wore off because my backache disappeared very suddenly and I stopped getting twinges. When I've miscarried in the past, it took ages for my levels to drop and I could always tell when it finally dropped to zero. Sorry, it's all me, me, me today I'm afraid. 

Just to add to the LIT stuff - I had mine done back in Feb in Athens when I was originally supposed to be cycling soon afterwards (which we delayed to sort out my thyroid problem), so we didn't re-test until September. The protection is not supposed to last that long, but ours had. I was glad that we chose Athens because I'm sure it helped that I had 2 treatments and the correct Beer protocol. I do agree that Dr T is a nightmare to get hold of. I found getting Dr Gorgy to contact him directly was quite effective.


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## lalaby123 (Sep 21, 2008)

Jofie - as long as AF hasn't shown its face there is some hope so i declare you a NO AF zone     

Dee- yes putting it off till new year sounds like a good plan unless you want to get it out the way, also bear in mind that if you do show to have raised CD57 the treatment he will suggest is Humira which you have to take BEFORE you start txt and it takes time for the levels to drop so bear this in mind when planning your months

AFM - just hanging in there, keeping busy to make the days go past quick

love to all xxx


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## bluprimrose (Sep 1, 2009)

hello all

hope you are all well - and sending     to those who need them.

jofie, i agree with lalaby - it ain't over 'til the wicked witch shows her face - and she hasn't yet, so     you don't see her for the next 8 months.

afm, i have just received the last of my blood test results.  all gobbledigook to me!  just wondering if anyone (diane?!) might be able to help me interpret them please?:

TH1:TH2 intracellular cytokine ratios:

TNF-a:IL-10 (CD3+CD4+) result is 14.7 ratio (limits 13.2 - 30.6)
IFN-g:IL-10 (DC£+CD4+) result is 2.9 ratio (limits 5.8 - 20.5) so i am below the limits on that one

NK assay with Intralipid:

50:1 w/Intralipid 1.5 mg/ml result 9.0%
25:1 w/Intralipid 1.5 mg/ml result 6.5%

thanks so much in advance for your thoughts/help.


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## niccad (Apr 28, 2009)

Jofie - sorry to hear about the tests, but I'm with Lalaby. It is still early. My NHS clinic used to test at 14 past EC, but changed to 14 days past ET as they were getting so many false negatives. If there's no AF there is still hope   

Lalaby - how are you doing? Not much longer now... 

Diane - great news about the numbers doubling again. I've read about so many people on here with low numbers who have ended up fine. I'll be thinking of you on Tuesday x

Mag - I recently had LIT with PA... If I had had more time (and had done more research) I would've gone to Greece. I don't agree with LIT being done IV and PA puts 2/3 of it back IV...

Saffa - I'm doing FET and DrG told me start aspirin straight away, have intralipids day 5, start prednisolone & clexane day 7 of my cycle ... I will start gestone the day I ovulate. DrG seems to give everyone slightly differing dates.... Does sound like you will need to start pred & clexane day 5 of estrofem. thanks for asking about the gestone injections - the pharmacy freaked me out as they were so confused about the needles to prescribe and expected me to know (I just stood there looking gormless   ). I'm still not sure - am I right in thinking I need 2 set of needles... one to draw up and one to inject?

Hi to everyone else. Pinpin - I hope that you are having a great great holiday in Portugal & enjoying every second of being pg! xxxx

AFM - I had a stupid wobble yesterday. Started the prednisolone and clexane and DH kept asking if i was ok and I was just quiet and said 'yes I'm fine'.. but he kept pushing and before you know if I just had these stupid fat tears rolling down my face. So stupid - I should be excited about this FET cycle but I'm just convinced they won't survive being thawed & I'm just so angry that I have to take so many pills and injections when it's supposed to be something so joyous. I know we're all going through the same thing but I just couldn't cope with it yesterday... I need some serious PMA   . Sorry for ranting... just feel the need to moan ATM. So wish I could be upbeat every day


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## niccad (Apr 28, 2009)

sorry bluprimose - i think we posted at the same time. What is your NK assay without the intralipids? I think your cytokine ratios look ok, but hopefully someone who knows more will be along soon. Your NK with intralipids looks the same as mine was - but guess the effectiveness depends on your original numbers.... it should show these higher up on the same page


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## lalaby123 (Sep 21, 2008)

BP - your cytokines are ok so no Humira for you yeeepeee

Niccad sending you lots of         we all have those days I hope you will be better soon


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## bluprimrose (Sep 1, 2009)

thank you so much niccad and lalaby    .

my other results came back thursday and i posted them on this thread then, in the afternoon.  i don't understand them at all and am seeing mr g on wed - but of course i'm keen to know what i may or may not need sooner!

lol

bpxx   

        to us all


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## Jofie (Aug 7, 2008)

niccad  - you don't strictly need 2 sets of needles for gestone - but it really helps to keep the needle sharp if you use 2. I have read that some people use a slightly smaller needle to inject but I was not told to do this. The length of the needle is the important thing - it must be 1 and 1/2 inches long for deep intramuscular injection. I also believe that the slower you inject, the less bruising and helps with absorption.  We do all have those days - sending you      . 

AFM - have now spoken to Dr Gorgy and he agrees with you and lalaby and bluprimrose that it's too early to be sure with a urine test  , so I am going in tomorrow for a blood test. Which means I have just had to do my first gestone injection myself and of course made a complete ****-up of it by forgetting to have a cotton ball on stand-by to put pressure on the injection site. Blood ALL over the kitchen floor  . Didn't hurt a bit though - I should have just dealt with my fear of the big needle earlier and done the lot myself!

BP - great news that your cytokines are OK. Not needing humira will save you a packet.


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## Diane72 (Oct 29, 2007)

Good evening All,

Wow lots going on today!

Niccad, I just use one needle & syringe for the gestone. Hope you a re feeling a bit better today. This journey is so emotionally draining, I too had a bit of a   tonight, I think the anxiety is just so stressful.

Jofie, good luck for the blood test tomorrow, I'll keep  . For me even the blood test was only HCG 29 on Day 14 so it is really early. Glad you got through the injection without too much pain.

BP, your cytokines look fine. Good luck with your appointment on Wednesday!

Mag, Re:LIT, I have heard Greece is better but I went to Mr. A just because I had already started cycling so needed to get it booked in ASAP. I am having my/DH's bloods taken for a LAD re-test tomorrow, so when I get the results back I can tell you how well it worked. 

Deegirl, I had a couple of nights I stayed in a hotel near ARGC (which is just up the road from Gorgy) to give myself a break from the 5 am starts during some of my previous cycles and I booked at lastminute.com on their 'Top Secret Hotels' deal. Although they say its 'top secret' they tell you if they are near Oxford Street and if its near there then its not too far from Gorgy

Betty, welcome and wishing you luck in finding some answers with Mr. Gorgy

Peanuts, Lalaby, Cozy, sobroody, Saffa, hope all is well with you and thanks to all for all your HCG rising wishes!  

Next HCG test and LAD re-test tomorrow,

Diane x


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## bluprimrose (Sep 1, 2009)

deegirl - try the holiday inn regents park (it's on corner of great titchfield street) - only a 5 min walk away or the white house hotel which is opposite great portland street station - very near too.

diane, good luck for your tests tomorrow - have absolutely everything crossed for you.

good luck jofie too -     for you.

hello to everyone else.  just to let you know, i went to my gp today armed with all the drugs i will/may be taking during my upcoming tx - he was able to prescribe me cyclogest (i got 7 boxes!!) and said he'll also be able to prescribe gestone if i need it.  all the others are too obviously for ivf and i'm not in the free ivf category unfortunately.  but cyclogest is around £20-£25 a box so it's worth getting it from your gp if you can.

diane, thanks for looking at my results!  from today's and last thursday's, do you think i'll need any extras? - ivig, intralipids, humira etc.? (i know i've already been told prob not to humira).

thanks again - and good luck again!    

bpxx


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## Jofie (Aug 7, 2008)

Diane - thinking of you a lot and sending all the     I can your way for tomorrow. 

BP - well done on getting the cyclogest, gestone and the immune drugs from your GP. That's fantastic - every little helps!

Thanks so much to everyone for their good wishes. Guess I'd better hold off on that big glass of red wine with my name on it...


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## Sprinkles (Nov 6, 2008)

Jofie ~   and good luck for test tomorrow, also thanks for link on gestone injections, they made it look so easy, and lots of good tips.

Diane ~       for those levels to rise again tomorrow

Niccad ~ sending you some hugs hun  

Lalaby ~ keep going mrs you're doing ever so well with your PMA, fingers crossed for you x


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## lalaby123 (Sep 21, 2008)

Jofie good luck with your test tomoro keeping everything crossed for you xxx

diane good luck with your retest I really hope it has doubled again sending u lots of   

BP I am sure I commented on your test results last week from what I remember your nk cells weren't a major concern either lets see what dr g says on Wednesday good luck with that go armed with questions otherwise it will be over before u know it good luck xx 

sprinkle how's it going?? R u downregging?? Hope ur well xx 

AFM ladies been keeping   but  first hints of very mild cramps this pm 11 days past collection ....u know what I wanna hear but only if it's true from anyone who's got pregnant if they had cramps and still got BFP

love to all xxx


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## Sprinkles (Nov 6, 2008)

lalaby ~ hoping they are snuggling in pains  .  I'm not down regging, am on short protocol so am stimming at the min, tummy feels lots of activity going on down there which I'm hoping is good, getting quite bloated as well, hopefully in next week for EC.


----------



## mag108 (Jun 28, 2008)

Thanks to you all so much for your very thorough and informative responses on LIT. Still no decisions made.  But I think I may concentrate on getting the uNK cells tested and having the  hystersalpingogram done before xmas, get one LIT done early Jan with another done mid-late Jan. I will propose as such to Dr Gorgy in a fax this eve. That may work with starting long cycle at end of Dec and if not then I will start end of Jan. My main issue with LIT in Athens is having to take 3 days out of work each time...it's a bit of an **** to get to from here (UP North).... I work in an openplan office so trying to get private calls in is a no no, so I write letters and faxes followed up by calls...so time consuming. Just made potatoes dauphinouse, which is in my top 10 for fav food. and have had two helpings loverly.........

CozY: thanks for your help, it makes SUCH a difference having all of you guys share your exp on here. I honestly dont think I would get on without it....so thanks again (I am a pal of Sarah (swinny!), she said you were brill). Your list is very helpful indeed.

Diane: thanks to you too for all of your excellent information. Wishing you well for tomorrow....Sending you a big hug!   


DEEgirl: Good luck with it all and it does sound like we may well be there at the same time! You are lucky you ccan get uNK cells done in Belfast!

lalaby123: wishing you well! Sounds like implantation!   

Betty: welcome to the thread and so so sorry for your loss. 

Jofie: Sending you a big hug hun. I know you feel like it might be over  but all the experts are saying 14 days after ET....Wishing it to be your turn.

xxx to everyone else


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## Jofie (Aug 7, 2008)

Lalaby - I'll add my voice to the chorus - cramps on day 11 is cause for optimism - you had them a few days ago too, I think? I had cramps my last BFP starting around day 7 or 9 - can't remember which. They were exactly like AF cramps. Can't imagine AF arriving while still on progesterone - does that happen often? I thought AF only arrived during the 2ww without it. 

Thanks everyone for the hugs and support - it's helped me so much today. 

Glad the video was helpful Sprinkles. Do watch the lovenox (clexane) one if you haven't already - saved me half a dozen new bruises since I found it. 

Must. go. to. bed.


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## Cozy (Jul 17, 2008)

Hi Mag108,

Glad my post was of some use. it is difficult to know what to do for the best sometimes.

yes you are right it is a pain in the you know what to get to Athens from our neck of the woods but hopefully it will all be worth it. I think Sarah will be going there when she does her next cycle too. I hope our next cycles work for all of us    

Where are you having your uterine biopsy? With Dr Gorgy? Take a painkiller before you have it done, it is painful but worth it. 

I'm having hydrosonography today, also know as a hysterography or saline ultrasound... not looking forward to it, get fed up of people checking out my bits, even if it is in a good cause  

I like dauphinoise aswell... yum yum

Cozy


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## ells (Mar 19, 2008)

Hello lovely ladies   ,

I am back from holiday and spent last night catching up with what has been going on, boy you guys can chat!!!  .

Congratulations to Pinpin it was fantastic reading your news, well done hunni.

Diane, congrats too I hope the scan brings you good news hunni.

Lalaby, it all sounds very positive hunni.  How are you feeling?

Omni, how are you doing hunni, hows that bump?

Cath, how are you doing hunni?  I hope that the ms has eased up a bit now.  When is your next scan?

Mag108, we were in the same dilema as you with LIT treatment as it would really be a nightmare organising it in Athens for us.  We decided that we would go to Paul Armstrong when we need too.  Hopefully we will be able to get an appointment.  There was rumour that Dr G was going to be doing but I dont know where he has got too with it.

Cozy, hope the scan goes okay today and isnt too uncomfortable.

Deegirl, how are you sweetie?

Jolfie, hun it may still be too early for the HPT to pick up any hormones.  I really wished we had been offered blood tests for our result and at least you know whats what especially if you have had some symptoms.  Sending you     .

Nix, hi hunni, I hope that you find cheaper flights.  I would have thought these airlines would want to be encouraging customers!!

Hi to everyone else, hope that you are all okay.

AFM, we got our paperwork to sign for our NHS go before we went on holiday so that was good, we are just waiting for the appointment now.  My mum's op went well, she has had a couple of 'funny' moments where her heart is doing funny things but they are taking out some more tubes and stuff today so she should be more mobile.  I cannot tell you how relieved I am that she is okay.  All being well she will be allowed home this weekend.  We are hoping that she will be home and able to go to Ricky Gervais next Tuesday.  Our holiday was nice, but I really struggled to relax as I was so worried about my mum so I feel like I need another holiday now   .  Our friends that we went with got engaged when we were having a drink, it was really nice and we felt honoured that they chose to do it infront of us.  I have a pile of work to get off my desk so I better get going with it.  

Hope everyone has a good day,

Ells


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## lalaby123 (Sep 21, 2008)

Ells welcome back and happy holidays and glad your mum is doing ok

Cath - good luck with the scan today i hope you won't feel a thing, where are you having it done??

AFM ladies, Dr Gorgy wants me to test 4 days earlier than when Care want me to test ie THIS thursday instead of next Monday which is somewhat too soon for my liking as in i haven't prepared myself mentally and i don't think i can face the result if its negative.....on the hand it will put me out of my mysery sooner so secretly i am happy the only thing is if the hpt is negative he wants me to have a blood test and i don't know if Care will do a blood test have sent an email to ask......

what i want to ask you girls you have got their BFPs is if i am pregnant is he likely to suggest IVIG rather than intralipid if my suppresion with Ivig was down to 10 and with intralipid down to 15 given that I already have had a round of ivig and intralipid on day 8 and 10 of cycle this month?


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## niccad (Apr 28, 2009)

Lalaby - From what I've read on here, if you get a positive blood result DrG will probably suggest IVIG immediately. He seems to prefer it to intralipids. Has that been the same for everyone else? Good luck for thursday... xx


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## Jofie (Aug 7, 2008)

Hi everyone,

Lalaby - it must be difficult dealing with conflicting advice. If I had your symptoms, I'd be impatitent to test, but that's just me. Good luck whatever you decide.  

Diane - thinking of you.    

Ells - welcome back and thanks for the support. Great news about your mum and your NHS cycle. 

AFM - unfortunately when I went for my blood test morning my BFN was confirmed, but there was no doubt in my mind really after the HPT yesterday. I had no symptoms whatsoever, no hint of anything hormonal going on  . I'm sad, but it has made me even more determined to crack on with the next step. Had a very productive conversation with Dr Gorgy this afternoon. He is happy to do IUI on this next cycle to make the most of the IVIG etc. still in my system. I stay on the prednisolone, stop the clexane until day 7, and will take 300 of Fostimon every other day. So glad I don't have to take a break - I find all the waiting the most difficult thing about this whole process. 

I learned that my response this cycle wasn't as poor as I thought - I had 4 follicles the right size and 3 that were too small, so not great but could be worse. Because the embryo quality wasn't great, he suggested donor eggs, but my partner is very opposed, so I told him I wanted to keep trying for now. I stopped taking DHEA on the advice of my thyroid doctor, which I now feel was a mistake, so I'm going to go back on it, and also go back on Chinese herbs and keep up with my healthy eating and fitness regime. Can't help feeling it was the 600 dose of stimming drugs which had a detrimental effect - my embryos were grade 1 perfect last time. I don't see that my eggs can have deteriorated irretrievably and there's no hope except donor. 

He also recommended I have a hysteroscopy because of a cyst in my uterus, so I need to ask my GP if I can get that done on the NHS. 

Hi to everybody else - hope you're all doing well.


----------



## Sprinkles (Nov 6, 2008)

Hi ladies

Jofie so sorry hun,         thoughts are with you.  Fingers crossed nhs help out with the hysteroscopy.  

Welcome back ells, glad your mums doing ok and hope she gets home this weekend

Cozy hope today went ok

Lalaby you heard anything back from Care re blood test?  Everything crossed for you xx

Diane hope you got on ok today and those numbers are still rising 

AFM well not so good news on LAD results after LIT, still a negative and IgGB cells only got up to 37, which is an improvement on 12, but still not good enough.  Don’t have enough time to do another before EC which is potentially next week, so just going to have to ride the storm.  Was really hoping figures would be better, but that’s how it is.  Tummy is well and truly bloated now, there’s lots of rumblings and things happening down there so hopefully lots of eggs growing in the follies.  Off for a scan to see how they’re doing on Thursday.

Hi to everyone else hope you are all well x


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## Diane72 (Oct 29, 2007)

Hello All,

Jofie, I'm so, so sorry to hear about your news from the blood test. Wishing you lots and lots of luck for the IUI.

Lalaby, I personally always want a quantitative HCG as I think HPTs tell you so little. You can arrange it through Care, even if there is somewhere you want to have blood taken locally. I just phoned Care (Nottingham) and told them its what I wanted to do and then you just need to arrange it and pay them extra over the phone. I did that for the first one and had my blood taken at TDL in Wimpole Street. However, for the subsequent ones I found that rather than worry about whether the form would reach me in the post on time from Care I just arranged to do them at TDL through Mr. Gorgy. On the IVIG question, I suspect he'd give IVIG.

Ells, welcome back! Glad to hear things are going well with your Mum.

Cozy, how did the hydrosonography go? Why do they do that rather than say a hysteroscopy?

Mag, sounds like you have a plan in place, which is good. I know how hard it is to juggle work and treatment. I have to do all mine in annual leave so it basically that wipes out the thought of any 'real holidays' as two rounds pretty much absorbs the majority of annual leave. We are forced to take annual leave between X-mas and New Year, so I'm hoping for a bit of a break then. 

Sprinkles, I hope yor littles follies are growing nicely!!  Sorry to hear about the LAD, hopefully it will go up 'naturally' with pregnancy. Sending you lots of   and good luck for Thursday.

Bluprimrose, Lucky you on the GP front! I tried my GP again and they point blank refused to give me any of my drugs  So my 'top up' drugs cost me £567 today!!! Re: your meeting with Gorgy, I think you should mentally prepare to discuss things like 'donor eggs' and how you feel about them. I only say that as when doing DNA fragmentation tests/'donor sperm' was mentioned to my DH, he reacted really defensively because he hadn't had time to think about the idea. It may also be that with a more agressive treatment cycle you may be able to get more eggs for CGH, which should help verify if your own eggs are OK. Have you had your AMH/FSH tested? what were they like? 

Hugs to everyone else, my HCG today was 871, still spectacularly low for 5 weeks 4 days and a doubling rate of about 3 days rather than 2 days. Lets see what the next week brings     

Diane x


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## Sprinkles (Nov 6, 2008)

Great news on the number increasing Diane but can appreciate your apprehension,  when do you test again?


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## Donkey (Nov 24, 2007)

Hi 
My NHS clinic are messing us around with dates and before I get dh to phone back tomorrow morning I wonder if anyone knew the minimum amount of time between a LIT treatment and embryo transfer?

Thanks girls
Donkey
xx


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## FJ (Aug 9, 2008)

Hi
I saw Dr Gorgy today had 13 vials of blood taken. I am very nervous about the results. I have to say I did not really understand the science of what he was saying. He suggested we ask Gp about chromosone tests I hope they will agree to do that. He said we could have treatment without tests which I would not feel happy to do. It made me laugh to myself when he got on his calculator and up popped £1600 I hope its worth it.


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## Sprinkles (Nov 6, 2008)

Hi FJ

Would recommend investing in book by Alan Beer "Is My Body Baby Friendly?", it'll help on all sorts of general questions and everything related to the tests that you've had done today with DrG.

I myself have learnt an extraordinate amount of information about my body in just a few months through DrG and he is a lovely, caring man, I'm sure you'll find it worth it hun x


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## lalaby123 (Sep 21, 2008)

FJ - its all very nerve wracking when you are new to this immune world but you will get your head around it soon and it becomes second nature....have you read Dr Beer's book? if you haven't its a good idea to read it before your test results so you understand whats going on
good luck with it all and hope they will shine some light for you

Sprinkle hope stimming is going well

Diane keeping everything crossed for you, maybe its just a slow starter and will soon catch up grow embie grow

Jofie - sending you lots of    but glad you are going straight into IUI what a good idea i think i will do the same if this cycle fails

AFM - Care will do a blood test for me Thursday morning and they do not want me to do a peestick as they think 14 dpEC i may get a false positive from the hcg shot so i am spared from the agony of the peestick and then I guess have to tell Dr G the result and see what he says....did most people have IVIG on a BFP??

Cozy how did you go today with scan were you awake? what do they look for?

Blueprimrose good luck with appointment tomorrow 

hope the pregnant ladies are doing well Cath, Choice, Pinpin hope you are all well

love to all else


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## lalaby123 (Sep 21, 2008)

FJ - I can't reply to your pm because your inbox is full but feel free to ask any questions you have, whereabouts Cheshire are you?


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## deegirl (Jan 17, 2009)

Hi Mag
Not sure if this is correct but I did read on a post a while back that Dr A is now following Beer's protocol, might be worth checking out.  You had said that we might be there at the same time, do you mean you might be cycling in the summer with Dr G?  Would be great to have a buddy!!  

Hi to all the rest of you.......Dee x


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## deegirl (Jan 17, 2009)

Ells -Welcome back, glad your mum's op went well.  Hope she continues to make a full recovery.  I'm fine thanks for asking.  Was at Dr G's last Monday and got all the blood tests done.  Waiting patiently now for results.  

Mags - I may not be getting biopsy done in Belfast, not sure if all gynecologists would carry out that procedure??  Might feel better about going to Dr G anyway, would be good if I could time it with a consultation to get blood results so that would mean one trip and hence one day off work.  I HATE having to explain to my boss, he's so inquisitive and asks for proof ie letter.  I wonder does he carry out the procedure in his office or in a hospital/clinic - anyone know??

Lalaby - great news that you're numbers are rising.  

Dee x


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## bluprimrose (Sep 1, 2009)

thank you so much lalaby       .

hello all - sorry for lack of personals.  got to get up early to see mr g in the morning!

   bpxx


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## lalaby123 (Sep 21, 2008)

Deegirl i think you meant to say Diane about rising numbers! as i haven't tested yet 
re biopsy yes Dr G does it in his office (behind that curtain shield) and yes i don't think the the biopsy for uterine biopsy can be done in a lot of places as they have to be sent to the Beers centre for analysis so make sure its the right kind of uterine biopsy if you are doing it elsewhere as there are ones which check for hormonal abnormalities etc and that is not the one Dr G wants


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## deegirl (Jan 17, 2009)

So sorry for that error lalaby but hopefully we'll be saying that to you very soon!!  Know what you mean about the uterine biopsy but Dr G suggested I get it done in Belfast and post him the evidence!!  I jokingly asked him HOW I would post it and he replied 'first class post is fine'!!!  Apparantly there is no urgency for such a sample unlike bloods.  So not sure what to do.  Hope you're doing well and getting lots of reassuring symptoms.

Dee


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## bluprimrose (Sep 1, 2009)

P.s. Hope all ok with you diane.

Night night.

bpxx


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## Diane72 (Oct 29, 2007)

Good luck with your appointment tomorrow BP!

Night night all

Dx


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## lalaby123 (Sep 21, 2008)

Ladies I need som advice 
my tummy is like an African drum I am suddenly panicking that I've had ohss all along and ignored it... The thing is I got bloated ever since I went on prednisolone last cycle and it just continued while stimming but it has gotten worse now that I'm at end of 2ww.... Is this a side effect of the drugs/constipation or could I hav ohss I pee normally I think and hav no pain but from today my stomach muscles feel tight when I move ....any advice much appreciated


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## Cozy (Jul 17, 2008)

Hello ladies,

well my hydrosonography was not so good. It was very painful and inconclusive as the catheter with the saline in fell out and there wasnt enough saline in my uterus to have a proper look. It was really painful getting the catheter in far enough, as apparently my cervix is very tight and fibrous at the top, this would explain why my last ET was very painful too. I even had local anaestetic injected into my uterus but that didnt help the discomfort much.

The scan showed I have a septum and this can cause miscarriages and failed IVF cycles, and it may need to be split, but if this is the case, I have to have one period before I can TTC or have IVF, That would mean delaying my IVF cycle in 5 weeks time. Has anyone else got/had this problem? 

Anyway to cut a long story short, the Dr recommends that I have a hysteroscopy under GA so he can dilate my cervix at the top to make ET easier and do a through check of my endometrium etc. so I am having this done on Tuesday 17th.

Theres always something isnt there  

Cozy


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## Cozy (Jul 17, 2008)

Lalaby,  I think it is very unlikely you have OHSS, you dont have the symptoms. Are you going to test on Thurs? good luck  

Diane, good to see your numbers are still going up. You may have a little fighter in there who's not prepared to give up.    

Sprinkles, sorry to read your levels arent as good as you hoped, its still a good improvement though. Good luck with your scan on Thurs - I hope theres lots of good eggies growing.   

donkey, not sure about time limit after LIT to ET, I dont think that was mentioned. I know you shouldnt have Humira until a week after your 2nd LIT and steroids 1 month after, but not sure about ET. Will you be doing 2 lots then retesting?

BP, how appt goes well with Dr G.

Jofie, sorry to read your news. You never know, your IUI may work.   

Ells, I hope you get an appt soon. Hope your mums ok

Hi to everyone else  

Cozy


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## lalaby123 (Sep 21, 2008)

Oh cozy u poor thing that sounds horrible    but atleast it has shown something that u didn't know before....I am sure removing the septum will make a big difference?? It's a shame they can't do it as the same time as hysterocopy next week   and it's good u r having that done too...It's never ending isn't it but u r making positive progress so it's worth it....thanks for advice re ohss I am guessing that a drum for a tummy is normal then when doing txt xxx


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## hanadiz (Jul 23, 2007)

hi,
i just had a BFN on my fet cycle, in  brief, i had 6 fresh cycles and 2 fet
on my 2nd attempt of fresh cycle, got preg but the embryo stopped growing on the 7th week. and on my 1st fet i got a chemical preg then i found out i had immune issues so moved to argc, did the whole thing and had IVIG but still (1 fresh & 1 fet) ended up in BFN. so now am looking at CGH? does anyone know if Dr Gorggy does it? I know he does his procedures at LWC and they are now running a trial on CGH, and am not eligible for the trial, i dont mind paying for it. I called them up and they said its up to Mr gorggy to decide?

did anyone know anything about it? or even discussed it with mr gorggy?

thank you

Hanadi


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## bluprimrose (Sep 1, 2009)

i'm sorry to hear about your recent bfn hanadiz.  

i saw mr gorgy today and we mentioned cgh but i don't know if he actually does it.  i'm ay lwc and think their trials are starting soon - but i'm not eligible either.

i heard a talk about cgh at the fertility show and it does seem like the way forward.

hugs,

bpxx


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## lalaby123 (Sep 21, 2008)

BP - How did you get on today? what's the plan of action


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## Diane72 (Oct 29, 2007)

Hanadiz,

Just to say the 'timing' of immune tretament is also important. Since leaving ARGC (where I had IVIG 1 day post ET and on BFP aswell as prednisolone), I have discovered CARE Nottingham, Gorgy and Geoff Sher from SIRM in the US all adamantly believe it is key to have immune treatment earlier than this around Day 6 of stimulation as the immune issues could cause DNA damage to the eggs. Mr Gorgy did mention to me they do the CGH on blastocysts, which you then freeze them down while getting the result. I think only CARE Nottingham are doing the real-time CGH on eggs that does not require freezing (?).

Cozy, so sorry to hear about the septum and the difficulty with the procedure. I have read quite a bit about ladies having septums removed by Penny at Serum Athens on their thread, so maybe you want to have a look over there.

Lalaby, it is normal to have bloating and as you don't have the vomiting or pain etc. I wouldn't worry too much about OHSS

Hugs to everyone else,

Diane x


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## bluprimrose (Sep 1, 2009)

hello lalaby, how are you?

well, this is my plan of action....:

from now - high dose folic acid (5mg) and 75mg aspirin, from day 5 or 6 of stims - 40mg clexane & 25mg prednisolone (just as a precaution, not because i need pred), day after EC 60mg clexane, 150mg aspirin if i get bfp.  Phew.  Not too bad eh?  Although a couple of things clash with what i have been told elsewhere.

bpxx


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## lalaby123 (Sep 21, 2008)

oooh that's great BP you have got off lightly   hope they will do the trick for you on your next round xxx

Diane - thanks for advice  good luck with the next test results, keeping everything crossed for you xxx


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## bluprimrose (Sep 1, 2009)

P.s. lalaby.  I was too late for a uterine biopsy and can't have LAD test at mo as am single and mr g trying to find if i can have it tested against a donor's blood.

bpxx


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## Saffa77 (Feb 6, 2008)

well done bluprimrose you did get off lightly!  It still crosses my mind if any random had to have these tests would something show up , - as the only reason i went is because i have endo not because I have had various BFN or miscarriages and I have to be on clexane, gestone, intralipids, prednisolne and aspirin and folic acid.  If I hadnt of gone for these tests would I never of been able to fall pregnant??  My CD3 and CD5 was only like 2% high.  Sorry having one of those days again....


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## Diane72 (Oct 29, 2007)

Hi BP,

Thats in line with what I'd have expected based on your tests. ARGC give everyone clexane 40mg, aspirin 75mg and progesterone, even if no testing, from first round so its not too dissimilar from their standard protocol. Prednisolone is so cheap as it is generic why not have it as a safety net. I forget do you have MTHFR hetero or ****.?

Good luck for the next round!  


Diane x


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## bluprimrose (Sep 1, 2009)

Thanks diane!  Am starting down-regging on fri - eeeek!  

Am MTHFR ****.

Have you heard of clex @ 60 from day after ec before?  Sounds scary - my bruises are horrendous with 20!

Shame i couldn't have uterine biopsy or LAD though.

How are you?  How were your numbers yesterday?

bpxx


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## Diane72 (Oct 29, 2007)

Hi BP,

clexane 40mg is 'the standard' at ARGC even when you have no MTHFR / clotting issues. The reason you will be having a higher dose is because a downstream effect of the MTHFR homozygous issue is clotting issues.

Re: the bruising I think someone posted a link to a u-tube video on how to do the injection to minimise bruising. I know I have found that how you do the injection (and no rubbing afterwards at all) can really help. Also I find Bio-oil really helps get rid of bruising (none of the other things like arnica did anything for me).

My numbers are still rising (871) )but the levels are so low I'm not feeling too hopeful but lets see what happens in the next week, the waiting is torture!

Diane x


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## bankie (Dec 27, 2007)

Hi Ladies,

I've been lurking on this thread for a while, but thought it was time I came out and introduced myself!     Although I do know some of you from other immunes threads.

A bit of background - after 4 failed IVFs and various immune tests at the Lister which came back all clear, I went to see Dr Gorgy and found that I have a whole range of immune issues!!  So I've been preparing for my next IVF for the past few months - donor LIT in Athens has brought my LAD up nicely, humira has lowered my TNF-Alpha (and also seems to have lowered my CD19+5+ and CD56).  Now I'm just waiting for AF to arrive so that I can start my tx (short protocol).

BP - I am also MTHFR **** and will be on clexane 60mg after EC, I think it's pretty standard for us!

Looking forward to getting to know you all - will anyone be starting tx in the next couple of weeks, it would be nice to have a cycle buddy.

bankie


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## lalaby123 (Sep 21, 2008)

Bankie welcome on board great u hav addressed so many things for your next attempt   where r u having your ivf? Is it with dr g as well? All the best xxx


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## mag108 (Jun 28, 2008)

Cozy: I am really sorry to hear that ws so painful! Did you get given any painkillers? You really have had the full whammy of issues. I am sorry to hear about this septum. 

I will be following you down the same path. Dr G wants me to have the same hydrosonography.

Hanadi: sorry to hear about your bfn. I am afraid I dont know anything about cgh

welcome bankie.

hello lalaby: hope you ok
Diane: hang in there.
BP: howdy and glad there isnt too many issues for you

Still not heard back from DR T, 3 emails later.....


Deegirl: let me know about the uNK test....

thanks
MAG
X


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## Sprinkles (Nov 6, 2008)

Lalaby if you’re weeing ok and not breathless you should be fine, keep drinking and that should stave off any OHSS.  It could be good things that your stomach muscles are feeling tight for, keep positive hun x

Cozy so sorry hun sounds like you had a rough time.  Hoping the hysteroscopy helps, and good that you’re having under GA if everythings so painful.   for you xxx

Hanadiz sorry for your news hun  

Saffa  

BP sounds like you definitely have a plan, good luck for Friday  

Diane 

Hey Bankie xxx

Mag keep trying hun he will reply eventually

AFM nothing much to report apart from an extremely swollen tender stomach, and feeling a bit queasy and light headed today at work, but feel a lot better now have my feet up.  Scan tomorrow so early start.

Hi to everyone else hope you are all ok, and ladies with bumps are looking after themselves xxx


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## lalaby123 (Sep 21, 2008)

Sprinkles - thanks I am like a balloon i feel like i am going to take off any minute!!! good luck with your first scan tomorrow xxx


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## bankie (Dec 27, 2007)

Thanks for the welcome ladies.    

Lalaby I'm having my IVF at the Lister, as they are good with poor responders like me.  I'm sorry to hear that you're feeling so uncomfortable, but hope that it is for all the right reasons.


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## deegirl (Jan 17, 2009)

Cozy - I had a septum also which was only detected after my 3rd hysteroscopy!  It's not necessarily usually much of a big deal, my gyn corrected it and I healed up perfectly but since then had another chemical pregnancy which makes me think it had nothing to do with any of my chemcial pregnancies.  Hope this reassures you.  

Dee


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## bluprimrose (Sep 1, 2009)

hello all and thank you for your good wishes.  it's because of your help that i have my action plan - so double thank you!

bankie - welcome, and good luck.  i am starting down-regging friday so hopefully won't be far behind you.

diane i'm praying your numbers stay strong - you really deserve this baby. 

lalaby, although ohss is horrid (i've had it lots), it is manageable and can be a good sign later on in the 2ww.

hugs to all.

bpxx
p.s. i asked about trying to claim my immune tests on my private healthcare today and am still confused as to what to say/where to begin as my private healthcare only covers if you've had 3 m/cs - but i want to give it a go, so any suggestions of what to say to them would be gratefully received.  thank you xx


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## ells (Mar 19, 2008)

Morning lovely ladies,

Welcome to the thread Bankie   .  Good luck with your next tx .

Lalaby, it does all sound very positive hunnie.  Like the other ladies have said if you are not breathless and are able to wee with no problems then you have nothing to worry about.  You could always speak to Dr G and see what he thinks.  Are you testing today?  Sending you lots of        .

Cozy, sweetie that sounds awful and very painful    .  I really hope that they can sort it out next week for you and the you will be ready to go    .

BP,   its great that you have your action plan well done hun.  On the med insurance, when I phoned BUPA I told then that I needed further investigation into subfertility before starting IVF and had been referred to DR G by my GP.  My GP has been very supportive on getting tests etc done and has said that I have had more then 3 mc's.  Would your GP do the same for you?  

Deegirl how are you sweetie?  

Sprinkles, hope you feel better today.  Hope the scan goes well today   .  Let us know how you get on.

Diane, I really hope you have a little fighter in there and he/she was just a little slower getting tucked in.  Thinking of you hunni   .

MAG keep trying with the emails, hopefully you will get a reply today   .

Saffa, hun you are allowed to have 'one of those days' .  All I can say is that this IF business is tough but to throw IVF on top is really really hard.  I wish that we had done the immune investigations before/earlier as I am sure that has been my problem.  I just wish things werent as expensive but it will all be worth it in the end.  I dont believe that I would stand any chance of falling naturally but you do read and hear of people that have but I would rather give me some help to be sure IYKWIM.  

Morning to everyone else, hope you are all okay    
.
AFM, nothing to report yet on tx front but hopefully we will get a letter in the next week for our set up appointment at the clinic.  My mum is hopefully going to come home today, just needs to make sure her blood thickness is right and thats it.  She is doing really really well.  I have a question, having kept up with you all on your tx cycles, do any of you think that I should be starting doing some of the immune stuff now?  It seems that a lot of you have started humira and LIT before you started your tx but is that because you had start dates (roughly) for your next tx cycles?  I am a bit worried that we would be struggling getting everything done in time especially having read somewhere that DR Armstrong doesnt have any appointments until January?  

Also I am still waiting for our cheque back from Dr G's as BUPA paid the bill 3 weeks ago and I still havent had our refund - not through want of chasing - any suggestions?

Hope you all have a good day.  Lalaby good luck hunni.  

Ells


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## Jofie (Aug 7, 2008)

Morning everyone!

Cozy - so sorry to hear the hydrosonography was so painful and inconclusive - how horribly frustrating. It sounds as though the hysteroscopy may be helpful - anything to make ET less stressful can only be good for the embryos.

Lalaby - wondering how you are today - good luck with testing!

Hanadiz - welcome. Sorry I can't help re. CGH.

Saffa - sending  . Have you read Alan Beer's book? It's a while since I looked at it, but have a feeling there is information in it about the possible link between immune issues and endo and how treating with immune meds can have a beneficial effect on the environment, improve egg quality and response and so on. I have adenomyosis which is similar, and since addressing my autoimmune issues, my painful periods have been much less severe.

BP - 60mg of clexane is standard for homozygous MTHFR (I have this too). Here is the video link for the injections: 



 It totally works. I have unbelievable bruising from before, and not one new one since. I don't have private healthcare, I'm afraid, so can't help on that one.

Diane - thanks for the tip about bio-oil - I'll look into that. Sorry to hear your numbers aren't going up quickly enough to be reassuring. Keeping everything crossed for you and sending   

Bankie - hello and welcome. I used to be with the Lister, and I must say, this time round I did miss the comfort of knowing their embryology team is second to none. I didn't the like the clinic for other reasons, though most of the docs and nurses were fantastic, so am now with Dr Gorgy. Good luck for your cycle. I will be ding medicated IUI this cycle, so our 2ww may coincide.

Mag - you could get Dr Gorgy to speak / email Dr T for you. That's what I did. They both thought I was an anxious patient and were a bit amused by it, but I didn't care.

Sprinkles - hope your scan goes well - sounds like you have plenty of follicles developing in there!

Ells - glad to hear your mum is doing well. Dr A does the LIT quite close to the cycle I believe. If you don't know when you are starting tx but he is booked up, maybe you should book it now and then move it back if you don't start as soon as you think? Humira - IIRC, Alan Beer's book says that the best time lag between taking it and TTC is 17 weeks, but any time in the months leading up to it is fine.

AFM - waiting impatiently for AF to start so I can get on with my next cycle. Not over-optimistic for this first cycle, but started temperature charting on request of my acupuncturist and it occurred to me it may have been the herbs I took before my first cycle which helped get me my BFP. Trying not to worry about the cyst - it's not big and maybe it'll resolve on its own. Thanks to everyone for your kind words about my BFN. Going to try and get though again today to the woman who manages the NHS waiting list at the Homerton who never returns calls. And yoga to attempt to bring on AF! (sorry TMI )

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


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## Newday (Apr 27, 2005)

Cozy I thought you had a hysteroscopy at Reprofit? I had one to rule aout a septum

Dawn


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## Cozy (Jul 17, 2008)

Dawn,

no I've not had a hysteroscopy yet. Having one Tuesday. No one's ever seen it or mentioned it before yesterday.

Cozy


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## niccad (Apr 28, 2009)

Lalaby - hope that you're doing ok hon. Thinking of you xxx


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## lalaby123 (Sep 21, 2008)

Hi ladies, quick update me I can't believe I am writing this but I am PREGGERS!!!!! really can't believe it and will start thinking logically tomorrow as its still very early days only 14 dpEC so it could all go pear shaped but for now I am soooooooo happy and want to go out and celebrate with DH
will write again soonxxx


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## Cozy (Jul 17, 2008)

Lalaby,

 on your    

I hope everything continues to go well. I bet you are pleased you tested earlier now  

Cozy


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## bluprimrose (Sep 1, 2009)

lalaby, CONGRATULATIONS!!!  am thrilled for you.  you've been such a massive support and i wish you all the luck in the world.

so sorry for lack of personals but when i'm writing from my phone i can't see anyone's posts to refer back to. 

lol
bpxx


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## Diane72 (Oct 29, 2007)

Lalaby, congratulations!!!!! wonderful news!!!    

Sprinkles, how was your scan?

Jofie, hope your AF comes soon so you can start

Ells, glad your Mum is doing well. With Armstrong's waiting list and the need to do humira in advance of tx, there is no harm in planning ahead.

BP, good luck trying to make a claim my insurance company told me anything to do with miscarriage counts as 'infertility' under my polic which they don't cover so cab't offer any advice.

Bankie, good luck with the treatment

Hugs to everyone else,

As for me I just feel totally   , in my heart I feel the miscarriage will happen any day now and I can't stand not having an HCG test to check if it has already happened or not as the HCG can indicate it well before you bleed. In fact its stressing me out so much I might phone Gorgy's secretary tomorrow and insist on one. If the scan on Saturday shows 'not much' I'll be left not knowing for definite and I just can't handle the not knowing either way.  I think the theory that doing too much HCG testing is 'stressful' for patients is only true for patients that assume it is all going well until they find out otherwise, its definitely not the case for those of us that assume it its definitely NOT going well unless they find out otherwise!  

Diane x


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## Cozy (Jul 17, 2008)

Diane,

I can fully understand what you are feeling and I would be wanting a HCG done aswell, at least you have a clearer idea of what you are dealing with. I really hope and   that you do have a little fighter in there who will surprise you. You do need to know though.

Take care and I hope your HCG brings you some good news     

Cozy


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## Jofie (Aug 7, 2008)

Lalaby - YAY!   . So happy for you. Enjoy your celebrations and sending lots of    that you have a strong and healthy one in there! With the immune treatments, no reason to suppose otherwise at this point. 

Diane - completely with you that knowing what's definitely happening with an HCG is what you need, and should ask for. Hoping the very best for you.


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## Bettysjourney (Jun 11, 2007)

Diane - sorry to hear your uncertain news - that must be so stressful for you - I hope that you can get definate answers very soon.

Lalaby - congratulation on your       - here's to the next 8 months of a safe pregnancy.

Cozy - I am a patient at Serum with Penny and after my 2nd DIVF failure, Penny insisted I had a hysteroscopy as she has discovered many of her patients have had uterine septums or polyps unbeknown to them and have gone on to have instant success.  I had a hysto on the NHS in Uk which was all clear.  Following another failed attempt, Penny suggested that I see her colleague Dr Tassos for another hysto, I did and he found a uterine septum and a large polyp which I was very surprised about but also astounded with the NHS findings.  I do hope that your's goes well - good luck for 17th.

Hello to everyone else
Love
Betty xx


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## Sprinkles (Nov 6, 2008)

Diane sorry you're feeling down hun, I would definately insist if I was you as there is no price for peace of mind  

Lalaby     on your BFP, here's praying for a happy healthy 8 months.

Jofie hoping yoga does the trick but little dance to help you on your way   

Ells hope your appointment comes through soon, and great news about your mum coming home.  I did my immunes when I did only because I had to as clock was ticking for my tx, they wont treat me after next month so luckily had just enough time to get things in.

Hi everyone else hope you're doing ok x

Scan went well, have 16 follies at minute so plenty of potential hopefully.  Am hoping for quality as well, so fingers crossed.  Back on Saturday for follow up and to be told when EC will be.  Am guessing Tuesday, but could be Monday or Wednesday.


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## Cozy (Jul 17, 2008)

Hi Betty,

Have you had your septum dealt with? How long did you wait before TTC or doing IVF afterwards? Did you have any pain/discomfort afterwards? What advice were you given?

I just wish I'd have found out about this earlier. My donors EC is booked for 14/12.

Thanks

Cozy


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## Cozy (Jul 17, 2008)

Sprinkles,

great number of follies, lets hope there are lots of good eggies  .

You at MFS? I'm in at the Bridgewater on Tuesday.

Cozy


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## Sprinkles (Nov 6, 2008)

Hi Cozy

No ended up going back to Marys, which I must say was very impressed with today after its recent makeover, far more cleaner and brighter.  From my brief 2 visits to MFS it did look very nice.

Are you going to have your hysteroscopy and then continue with DE in December?


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## Cozy (Jul 17, 2008)

Sprinkles,

I've got 2 choices really..

1. Go to clinic as planned for donors EC for DH to do his bit.. then freeze the embryos and go back a month later

2. Postpone the cycle for a month or two, but as the clinic is so busy, I doubt I will be able to reschedule the cycle.

So I think it will be plan A.

I've been told I'll have to have at least 1 period after hysteroscopy befor IVF

I'll see what happens on Tues and take it from there

Cozy


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## Sprinkles (Nov 6, 2008)

Hi Cozy

Plan A doesnt sound too bad, hope everything goes well for you on Tuesday hun I might have to have one if this doesnt work so might be coming to you for some advice if  you dont mind.  Take care of yourself x


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## ells (Mar 19, 2008)

Just a quickie, 

Congratulations Lalaby that is the most fab news hun.     .  I am really happy for you both, enjoy this time.  Let us know what your levels are.

Diane,   I really hope things are okay for you and that you can get some answers and convince Dr G to do a blood test.  You def need peace of mind.

Hi to everyone else.

Just want to let you know that my mummy has had a set back and it has really scared me   .  She started feeling a bit funny at around lunch time, she went a bit faint and they think that she had a small blot clot but we are not sure where.  Her speech has been affected a little bit but she can still walk about and her co-ordination seems okay.  The nurse said she would be fine but I felt sick to my stomach about it.  Really worried about her    I am       that she will be okay and much better tomorrow.  She is really frustrated by this and upset that she cant go home yet.  I really want her to take it easy and make a good recovery.  Right off to say a few prayers  for her and to bed.

Night night all,
Ells


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## bluprimrose (Sep 1, 2009)

ells,     your mum turns a corner soon.

diane, sending you     - i know the minutes must seem like weeks.  surely dr/mr g can just send you 3 doors down for a blood test?  if for any reason you can't get one maybe you could try a clearblue digital test - it shows how many weeks pregnant it thinks you are, depending on your hcg levels - i know it's not very scientific, but it should show you if your levels are rising by moving you into the next bracket?  let us know how you get on.

cozy, good luck with plan a - plan a's are usually the best!

lalaby hope you're enjoying celebrating.

love and     to everyone else.

afm, i saw a consultant at my clinic today to tell them mr g's plan of action for me.  it wasn't a very good  consultation and i left feeling rather upset but i felt someone there should be in the know as to what i am doing.

one question.  has anyone else been told to be on aspirin (75mg) from very early on?  mr g said to go on it from now - i'm starting down-regging tomorrow.

thanks in advance for your knowledge.

lol ladies

bpxx
(anyone else think octomom's a bit greedy??! ;-))


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## lalaby123 (Sep 21, 2008)

Ells I  really hope your mum recovers well it sounds so scary sending u lots of    and    for het health 

Sprinkle great no of follies keep them growing what dose hav they put u on?? Good luck for next scan and glad at Marys has tarted herself up  

cozy how stressful to find this out so close to your txt all I would say is put yourself first and don't work around the clinics schedule if possible and think what will give u the best chances 

Diane I am sorry you r feeling low and can totally understand definitely hav another  hcg test and I   it will be good u hav to somehow regain your   to help encourage embie to grow 

Bp i started aspirin prednisolone and clexane beginning of September so I wouldn't worry about the aspirin the steroids hav givene lots of side effects but atleast I can say they hav worked 
Thanks to everyone for well wishes   

choice cozy cath and sprinkles I want to thank u specially u helped me at the start of my immune journey with som important decisions 

DH is being surpringly calm and doesn't want to get too excited I know it's early but I thought atleAst tonight we can be on cloud 9 but he keeps bringing me down to earth   I guess he's sensible  

love to everyone else I haven't mentioned xxx


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## bluprimrose (Sep 1, 2009)

lalaby, thank you.  so how many weeks before stims was that?  and what dose clexane were you on?

thanks again  

  

bpxx


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## Saffa77 (Feb 6, 2008)

Hi ladies

Lalaby - congrats whoooooo hoooooooo.

Diane - hope those numbers double, triple etc and hope its just a slow starter and hope you get a blood test to get you at ease soon.

Bluprimrose - I am planning on not telling my Portugal Doctor about all my meds I am going to take.  I have already started my aspirin and only cycling in Jan/Feb

Ladies I am needing folic acid 5mg do I need to go to the GP for a script for those.  In De Beers book I also read its good to take vit B6 and B12 am i right?  Is there any vitamin that has the 3 combined?  

Also am worried as because I wont be telling the Portuguese doctor about these meds what happens when he scans me and he sees all the bruises on my stomach or if he does a blood test to check progesterone and its really high or something?? will I get away with it?  Also can I travel with all those needles and syringes?

Sx


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## lalaby123 (Sep 21, 2008)

BP I tried naturally last cycle with immune drugs and then continued on aspirin and steroids had to stop clexane wen period came then restart at 20mg till day before EC and then restart on 40 mg after ET last month I was on 40 mg throughout but I don't hav MHFRT 

Saffa not sure what to advise re your portugese doctor can't you test his attitude toward immune treatment before deciding to tell him?? I think the bruises can be blamed on ivf drugs  

Diane any news Not long before the scan now...keeping everything crossed for you 

On the train down to London anyone gonna be there today?? I am hopefully going to run into to choice I also heard today that the lovely lady who I did last ivig with is also pregnant ) dr g is having a good week


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## Saffa77 (Feb 6, 2008)

hi lalaby - I have already asked him about immunes and he says he dosent believe in that.  Should I just go ahead without telling him??  How many of you ladies have gone on to take all these meds and not told your doctor.  I cant blame the bruises on IVF drugs because I am on a Donor Egg cycle - meaning all i take is meds to thicken my lining and progesterone just before Donors EC.

S


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## lalaby123 (Sep 21, 2008)

Hmmmmm I would tell him about the immune drugs then as they hav becom quite common practice and maybe skip the ivig/intralipid I told mine but they were open to it.... Can he refuse to treat you??


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## Saffa77 (Feb 6, 2008)

hhhhmmmmm dont think so cos we paying for this cycle so maybe ill just mention im on steroids and clexane and thats it.  I will only need 1 x intralipid which I will have with Healthcare at home just before I go ( which I thought was going to be really expensive but found it a  lot cheaper then getting it done at Dr G's practice)  - you making me feel guilty about not wanting to tell the doctor now.....  

S


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## lalaby123 (Sep 21, 2008)

No no that's what I was suggesting tell him about clexane and steroids and don't tell him about the rest yes hcah r great I hav my intralipid with them too u r lucky u r not having ivig I'm having my second one today     the baby better stick around after this expense!!!


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## hanadiz (Jul 23, 2007)

Hello,
can I have some feedback on Dr Gorgy? I am currently at argc where I had 2 -ve (1 fresh & 1 FET) am looking at options if i want to change clinics.....

any feedback will help? does he helps you in prodcucing good numbers of eggs, quality, fertilization rate, blast, his investigations?

I did my immune issues and had IVIG with ARGC but still nothing...... is he as expensive as ARGC??

any advice at this point can help,

I am just davestated and looking for any option that might help us to have our baby

Hanadi


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## niccad (Apr 28, 2009)

Lalaby -      Congratulations.... That's such good news. I'm popping into DrG's at 5pm today - will you be there 

Diane -    that you're ok & that the numbers are still increasing. Living in limbo is such a nightmare situation and I'm sure we're all praying that the limbo ends in good news.. xxx

Saffa - I'm having NHS natural FET and have told them nothing about the immunes. I was really worried they'd stop it or something. I talked to the dr about some of my results & he said if this didn't work he'd prescribe prednisolone next cycle (um...)

AFM - the steroids are keeping me awake. Is this the same for others? I also did a clexane injection yesterday and the site is still bleeding - 24 hours later. I called Dr G and he wants me to have a test today to see if i'm over-reacting to it. I'm walking around really carefully incase I fall over and scratch myself as I know the blood just won't stop  . This happened to anyone else? Just picked up the gestone (which - by miracle I managed to get on the NHS). They wouldn't give me any needles though so now I have to go back to the GP to get them (not great if I need to start on Sunday & GP is closed). This being prescribed stuff, getting needles and learning how to inject is all really rubbish isn't it. I wich DrG gave out a standard booklet explaining exactly when, where and how to jab!
On the good news front I had a scan this morning & have a 11.5 lining and it looks like I should ovulate over the weekend so the thaw should happen early next week... I have so many conflicting emotions about it as feel I can't get excited in case they don't defrost..  

Have great weekends everyone & Lalaby - hope to see you at the clinic. I'm just popping in for this blood test but if i know you're there I'll pop in the back room... 
Nic xxx


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## Saffa77 (Feb 6, 2008)

Niccad - thanks for your info - Also with me being in Scotland etc how would that work with just popping over and getting blood tests done??  Like in your situation for eg....... Would I just be able to go to the GP and get that done if DR G just tells me to get it done?  PS hope this bleeding stops for you.

Sx


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## bluprimrose (Sep 1, 2009)

a v quick question please.

when you take your 75mg aspirin, what kind to you take?  boots only has dispersable or specially coated, not just plain old aspirin in that strength.  

also, for those of you who have been on 60mg of clexane after egg collection, can you get a 60mg injection or only 40mg and 20mg?  and did you take the 20 all in one go or 40mg a.m. and 20mg p.m.?

thanks so much.

love to all.

bpxx


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## Saffa77 (Feb 6, 2008)

I take the boots dispersable ones in the morning they say 75mg aspirin on the bottle so either one is fine in tablet or dispersable.

I will be on 60mg clexane from day 5 of thickeing my lining so good question.....

Sorry cant help with that.

Ladies I have sent Dr G an email asking to explain how and when I take my meds - will he answer  to it or should I be phoning him?

Sx


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## Jofie (Aug 7, 2008)

niccad - sorry to hear about the bleeding from the clexane. Scary. Sounds like you may be on too high a dose or something? The steroids also keep me awake too. I am still on them because of doing IUI this cycle. I keep waking up at the crack of dawn and unable to get back to sleep. I agree with you about the injections - it's rubbish not having any instructions from Dr G. That's why I researched it online, and went to my GP practice nurse for my first lot of gestone injections. The pharmacist should give you needles though, that's really bad. I got mine from Ali's in Shadwell and he gave them to me without even a prescription. 

bluprimrose - I take the dispersible aspirin. Sometimes I just crunch if I can't be bothered to dissolve it! Yes, you can definitely get 60ml clexane syringes. I have those, but it took my local pharmacy ages to get hold of it. 

hanadiz - I haven't been to ARGC so I can't compare them to Dr Gorgy. What I would say though is that unlike the big clinics, with Dr Gorgy you get a very individualised tx plan, with the meds tailored to your particular needs, not a standard one size fits all approach. Also, you always see him, he is easy to get hold of by phone, always calls you back and he is very good at keeping tabs on you during your tx cycle. He is not very well-organised though, so you have to make sure you always write down what he wants you to do and keep track yourself and ask a lot of questions. The treatment is not particularly cheap, but I think it is slightly cheaper than the Lister where I was before and so are the blood tests. I think we ended up spending about the same for both cycles, but at the Lister I had no immune tx. The savings were also in the drugs as I found a cheap place in East London (Ali's in Shadwell) to get them this time. I would suggest going for an initial consultation which is not hard to get, and not expensive. His price list is up in the waiting room. 

AFM - AF finally on its way, so I'll be starting Fostimon 300ml on Sunday for my first IUI cycle. I will be injecting it every other day until next Monday when I go in for a scan to see if I have any follicles. I'll go back on the Clexane on day 7. Quite excited about this -  my attitude is I've got as much chance of a BFP this way as with ICSI  given that I only ever seem to produce 3 fertilisable eggs anyway. Fewer drugs, less stress, shorter tx - who knows, this could actually work!


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## Saffa77 (Feb 6, 2008)

Ladies sorry another question re:  gestone.  I believe I need 2mg syringe and green needles will the pharmacy supply these no problem?

Sx


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## lalaby123 (Sep 21, 2008)

Niccad sorry left dr gs at 4 hope the bleeding has stopped?? 

I too hav insomnia and it's not good 

Jofie great iui plan good luck with starting your treatment 

Re aspirin I take enteric coated same with prednisolone as I find the normal ones give me heartburn

I am a bit deflated today having heard from other pregnant girls at dr gs how many ivig/ intralipds they hav had to hav firstly the cost and secondly that even till 26 weeks or so u r still in the red 
so when can u relax and enjoy the process 

Anyway on a high note I met our dear choice and she is doing v well and is over the 12 week hurdle phewwww

dr g charged me 90 because I wanted to ask him a few questions about plans forward I was a bit miffed bur I guess it's only fair after all he is no charity but i thought by spending so much on ivig I cAn get my questions answered free cheeky me 

he's had two more positives today don't know who they r but it's v encouraging


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## Jofie (Aug 7, 2008)

Saffa - the 60ml clexane syringes are pre-filled (not the same as Humira pen, but you don't have to draw it up yourself). 

The gestone comes in vials and you draw it up yourself using the green needles. Do you have the needles on your prescription? If so, the pharmacy will definitely supply them.

I don't know if GPs will supply them to you for you to inject yourself. When I went to the practice nurse for my gestone injections every day, I took a needle and syringe with me, but some of the nurses used a separate needle to draw it up for sharpness. If I hadn't had a needle myself, I'm sure they would have provided them. But as for giving me needles to take away - not very likely - but different places have different rules. 

Dr Gorgy provides a kit with everything you need for tx, but it doesn't include the green needles / syringes for gestone. 

Yes - you can order syringes online. This is probably your best bet if you are without a prescription for the needles / syringes. I ordered small (1ml) insulin syringes for my suprecur because the ones Dr G gave me were hard to use. 

Popping back to say hi  lalaby and thanks for good wishes for my tx.


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## Saffa77 (Feb 6, 2008)

Jofie - thanks for the info you are a star.

Lalaby - sorry you feeling deflated Ive also thought how many intralipids would I need if I were to get a bfp as Dr G only said I needed one before treatment, does this mean if I get a BFP i have to have more and how often would one need them?? You right its all a lot of money!!!!! EEEEEKKKKKK. £90 is a lot of money and sometimes do feel that we are paying a lot of money that maybe we should get him to explain things a bit better?? After all we are paying a lot of money!

Sx


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## lalaby123 (Sep 21, 2008)

Depending on how u respond to intralipid bs ivig u will hav to hav one upon BFP and one upon heartbeat scan then two weeks later u retest NK levels cost 350 ish and depending on the results he will decide if and how often u will need it can be up to 26 weeks of pregnancy


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## Sprinkles (Nov 6, 2008)

Ells ~       for your mum hun x

Bp ~ sorry you didn’t have a good consultation, were they not very receptive to the additional drugs?

Lalaby ~ am on 150 menopur but think they might reduce it tomorrow as don’t want to over stim.  Have you got a date for a scan?

Saffa ~ you really need a letter/note from your GP to fly with meds especially needles etc  Its going to be hard to cover up some of the reactions you will have to the meds, there is a video on you tube that someone has mentioned to show how you can inject clexane without bruising if that helps, other than that unfortunately don’t know what to suggest its a toughie on whether to tell consultant or not as they may not be happy about it but also if something happens they need to know what you're on.

Niccad ~ I had quite bad reactions to clexane on previous tx, have decided not to take on this one.  I went to the airport to go on holiday and had done my injection an hour previous, was only when I went to my bag to look for my passport/tickets that discovered my tshirt was wringing wet with blood, site of injection took ages to heal.  Happened to me a couple of times so not uncommon I don’t think.  I’m also in same situation with with gestone and trying to get some syringes and needles from GP.  Good luck.

Jofie ~ fingers crossed for you hun x  Can I just check did you use the 1ml needles for gestone?

Choice if you’re reading hun, congrats on the 12 week milestone x


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## Saffa77 (Feb 6, 2008)

Hi ladies

Thanks for the advice but surely DR G should maybe explain it a bit better re needles and syringes etc if it wasnt for you ladies I would of gone round in circles and surely after everything we have been through and everything we pay we should get better direction Is it just me that feels this way?  I am getting frustrated as I am not sure exactly how to take it all and exactly what I need - I have emailed Dr G hope he replies and hope I dont get charged for information.  Sorry rant over but already under so much stress as it is with all my past with my endo and ops that went wrong etc.  So Do I need to get a letter from GP explaining what needles syringes I need so when I go to pharmacy they know what to give me?  Will GP know? or do i need to tell him?  I have a 'prescription' from Dr Gorgy with everything I need but it just says with needles and syringes.

Sorry ladies just frustrated  

Sx


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## Saffa77 (Feb 6, 2008)

Ladies

Sorry me again also with the clexane etc I have just read that you need to get repeat blood tests done?  first I hear of this and how am i going to get these repeat tests if I live in Scotland I cant just pop over to London Where will i just be able to go to a GP to get a repeat test they will be looking at me thinking Im on drugs or something.  How many repeat tests does one need to have?

mmmmmmmmmmmmmmm feeling stressed!
Sx


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## Jofie (Aug 7, 2008)

Sprinkles - no, I didn't use 1ml syringes / needles with gestone - it's a 2ml ampoule. For gestone I had bigger syringes and the green needles which were an inch and a half long. 

Saffa - if your prescription says needles and syringes, you will get the right ones that you need. The pharmacist will know what you need for deep intramuscular injection - which it what it says in the instructions that come with the gestone. 

Try not to worry - I know it's confusing at first but it gets easier. You're totally right though - Dr G really should have an information sheet at least for this stuff.


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## bankie (Dec 27, 2007)

Lalaby -           Fantastic news hun!! I know I've only just 'officially' joined the thread, but I lurked for a while and followed your story.  I'm so glad that you have got the best result after a stressful start.    

Just to wade into the gestone discussion - I ordered all of my meds for my next cycle from Chemist Direct, who I've used a few times before for previous cycles.  They called me today to say that they are out of gestone and had called three different wholesalers and they are all out of gestone too!  They also told me that even if they'd had it in stock, they wouldn't have been able to supply the syringes and needles!

I just spoke to Dr G (bless him for calling me on a Fri night) and he is going to send me another prescription for the gestone tomorrow, so that I can start calling round to see where I can get it from.  If anyone has ordered gestone and syringes/needles recently and knows where it's available, please could you PM me?

Thanks so much,

bankie


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## Diane72 (Oct 29, 2007)

Hello All,

Just a quick one from me as I have to go to sleep-Bankie I went to 4 central London pharmacies the other day before finding gestone (they too told me it was out of stock) but even then I had to get 2x50mg gestone rather than the 100 (which isn't an issue as you can just break two ampoules and put them in the one 2ml syringe). 

Its quite expensive but the Wellbeck pharmacy near Mr. Gorgy's office I have found usually has stock when others have run out (there was a similar 'out of stock' issue for one of the other drugs when I was at ARGC last year and Wellbeck was one of the few who had it) 

Re: the syringes/needles I have got them before in one of the chemists on Marleybone High Street round the corner from Mr. Gorgy's office without a prescirption, I just told them what it was for and they charged me a nominal amount.

My HCG was 1698 today, so still very slowly rising,

Hugs to all  

Diane x


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## bluprimrose (Sep 1, 2009)

diane, am so pleased to hear your numbers are going in the right direction - up and pray they continue to do so.

bpxx


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## lalaby123 (Sep 21, 2008)

Bankie thanku    

Diane glad hcg is still rising r u still having scan today??

Saffa I hear your frustration I love dr g but his style of doing things does frustrate me I think he needs to pay fertility friends because we are doing here what his nurses should be doing ie advising and answeing questions but honestly he is v good and if u ask him u will get your answer 

Jofie sorry can't help with gestone and wondering wether I should be on it?? 

AFM I've had shortness of breath since my ivig yesterday similar to how I felt on menopur my body just seems to react to everything these days otherwise boobs getting bigger   and I did a hpt just to see what a proper   would look like!!! Ofcourse it wasn't the dame cos I knew what the outcome would be and it didnt com with the anxiety and hope of doing a real test but still nice to finally see the two pink lines appear straight away unlike my first pregnancy which was v faint and took ages to appear... Dr g thinks my level could be twins      
anyway next hurdle repeat hcg on Monday and  scan on 30 nov hav to take it step Bt step


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## bluprimrose (Sep 1, 2009)

lalaby sorry you're not feeling great after your ivig  but great news that your boobs are growing & you may have 2 little ones inside! 

i'm just getting ready to go to a ff singlies meet!

have a lovely weekend everyone and thank you for all your answers re aspirin & clexane.  once again am on my phone so can't see anyone's posts to thank you personally.

bpxx
p.s. day 2 of buserelin!


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## bankie (Dec 27, 2007)

Jofie and Diane - thanks for your replies re. gestone.  I'm glad that I still have a couple of weeks before I need it otherwise I would really be stressing!!

Diane - it's good news that your levels are still rising, I'm just sorry that you're having such a difficult start to your pg.   

BP - hope that you enjoy your FF meet.  I've got one next Saturday and can't wait to finally put some faces to names!

Lalaby - I dream of the day I will see two lines on a HPT - well done again hun!!

Sprinkles - thinking of you today hun and hope that your scan goes well.


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## Ourturn (Oct 8, 2008)

Diane - do not give up hope hun. Your levels are still rising and going in the right direction. When I mc'd in Sept at 6w+1 my levels did not get above 250 so I think you will ok. My gp has told me about ladies she has seen who have had super low levels to begin with but end up with healthy babys.    

Lalaby - CONGRATULATIONS!          

Blueprimrose - I take the disepersable aspirin in a small amount of water which I find eaasier to gulp down in one. Think its better to do dispersable as it gets into your system quicker

Hi everyone 

I am not seeing Dr G for 2 weeks (30th Nov) but my nhs cycle will not start until the new year. I will be on the lp, down regging for 2-3 weeks prior to stimms. Will I have enough time to start any immune treatment I need, seeing as I will not get the results until mid December? Do you think Dr G will start me on humira straight away for my raised unk's from our appointment based on the result I got from Dr Q (6.1%)? I really hope he doesn't insist on doing it again as I don't think there would be time to fit it in before our nhs tx, and I couldn't go through it a 2nd time! 

Thanks 
Anna x


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## lalaby123 (Sep 21, 2008)

Thanks Anna- from what i know ladies who had to take Humira have had to take it before starting treatment and wait for their levels to come down....can't you see Dr G earlier the other drugs can be taken with your treatment cycle unless you are having LIT as well...perhaps others will advise you better on Humira


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## Ourturn (Oct 8, 2008)

lalaby - was supposed to see Dr G this Mon but appointment was cancelled as he will be away. Couldn't see him any earlier because I had to wait for the steroids I took with my recent pg to be out of my system. Bugger may need to rely on a higher dose of steroids


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## niccad (Apr 28, 2009)

Just a quick one as I'm on my phone. I'm ovulating... Yippee. However this means I need to start gestone tomorrow and I have no needles. I tried 3 pharmacies and they wouldn't help. My gp said they'd supply needles and show us how to do it, but of course they are closed. Sooooo frustrating. Let the needle quest begin!! 
Diane... Great news that the nos are still on the up xx
Nic xxx


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## Cozy (Jul 17, 2008)

Hi everyone,

Bankie, I got Gestone from Healthcare at Home tel 0800 3285323, it was delivered the day I after I ordered it last week.

Anna, If you are having LIT then you will have Humira 1 week after your 1st LIT then the 2nd one 2 weeks later, if you are not having LIT then Dr G will advise you when to take it

Ells, hope your mum is ok

Lalaby, has your good news sunk in yet. Pos twins eh... wow. I'd love twins. Did you have a long list of questions for Dr G to charge you £90? i think if its only a couple of questions and you are there he should not charge you. I had to pay another £90 to go through my protocol because I wasnt happy with the timings of things from my £90 consultation before that. I think if he was clearer and had your details in front of him when he was advising people it would be alot easier. 

Diane, glad to see your numbers still rising, I hope your scan goes ok and gives you some reassurance   

screen jumping about now and I hate that, will check in again later.

Cozy


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## Cozy (Jul 17, 2008)

Bankie,

correction to above - I didnt get my Gestone from HCAH, I got it from Yasser at Shadwells. It came with the needles aswell

Cozy


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## lalaby123 (Sep 21, 2008)

Niccad good luck with the needle quest - sorry can't help as no experience of this but surely even if you got them on monday one day late won't be too much of a problem??

Cozy - what's happening with your timings, is the hysterscopy going to allow you to do your treatment still??

i came down from my cloud 9  yesterday after seeing heavily pregnant ladies on drips at Dr Gs it made me realise the fragility of the whole thing and that i have a looooooooooooooong and scary road ahead of me...still i am very pleased that it has so far worked and I will do everything i can to make this one work so if its rounds of ivig/intralipid so be it....luckily DH is supportive on that front but he is not sharing my excitement as doesn't want to get too excited this early on  

re consultation, had i known he was going to charge me i would have prepared more questions, as it was i didn't want to take too much of his time so i asked him a few and it was about 5 minutes all in all, that's why i was a bit miffed to be charged because had i known i would have reeled off more questions...still i understand he has to charge for his time and advice and he did open my file and update it with my latest development so i guess it was a follow up consultation - will know for next time and to be fair he is very reasonable isn't he other doctors charge a lot more


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## Ourturn (Oct 8, 2008)

Cozy - really hoping I won't need LIT as I have gotten to 7 weeks before, but I guess I won't know until I have the tests done. 

Think I may need to tell some white lies about my AF to the nhs clinic so I don't start down regging until Feb as opposed to Jan. That is if AF ever arrives, I'm on CD54 today....clinic say its down to the gonapeptyl shot (down regging) I had the week before I found out I was pg! 

Anna x


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## Cozy (Jul 17, 2008)

Lalaby,

no, my timings are all to pot now and I'm not really sure when things are going to happen. My Dr in Manchester (I think you've seen him) says I need to have a period after my Hysteroscopy so the part where the septum was can get some endometrium on it, which will then be improved when I start taking Progynova. I had my depot shot on 6th November so my ovulation has been stopped so I dont know how long that lasts in your system for or when I will have my next period. I am going to ask if there is something I can take to reverse the depot shot and restart my cycle.

So, at the moment, we plan to still go over to Czech Republic for my donors EC on 14th Dec so DH can do his little bit, then we will have the embryos frozen, then go back to have a FET when I have had a period.

Hopefully it will all work out. its just a pain having to rearrange flights, cancel hotels, IVIG/Intralipids and scans.

I'm sure DH will become alot more excited when he sees the little one(s) heartbeat on the screen. Its just a self preservation mechanism so they dont get hurt, though sometimes it can come across that they dont really care or aren't that bothered - they are really.

Take care

xx


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## lalaby123 (Sep 21, 2008)

Is it Dr Edi-Osagie doing your hysteroscopy? I can see why you wished you had found this out sooner ....still better late than never 

you are right about my dh and self preservation i think has to see it to believe it!!!


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## Cozy (Jul 17, 2008)

Lalaby,

yes it is

Hope you're chilling today with DH looking after you

Cozy


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## Saffa77 (Feb 6, 2008)

lalaby - i see you are from manchester.  Did you have to redo blood tests to see if Clexane is working?  where did you have them done?  do you go down to London all the time?

Sx


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## mag108 (Jun 28, 2008)

..........ladies 

Having the laziest day ever before we go to a party. Finalyy got my m/c results back today after threatening to make a complaint (tests done on 30-09-09). It's a battle trying to get in touch with Dr T i Athens for LIT but I have booked uNK cell and saline hysterogram with Dr G in early Dec...for expediancy it's two on the one day. But I must admit to being a real chicken with internals so any tips on relaxation drugs welcome (sobroody ws it you who said diazapan (sp?)...)

I got a bit upset after a quick chat with Dr G. nothing to do with him.{I was snozzing on the sofa last night at 9.30pm when my phone vibrated, I didnt recognise the number and thought it may be to do with my flat that I advertised to let way back...turns out it was Dr G!, very impressed that he calles at 9.30 on a Friday night)

It's just that uNK call tests have to be done just before period but they like to do saline hysterogram AFTER a period in case there is a pregnancy...I then said 'well we are not TTC naturally at present because of recurrent m/c', and that upset me because it is the unspoken truth, but it's bizarre on some level to be 40yrs old and to be buying condoms when I want a baby.....

There is a real koan there. I want to ttc to get pg (but out of 40mths thats only happened 3 times and they all ended in m/c)...but another m/c would send me over the edge as well as ruin the nest IVF shot.....

Saffa: it's a lot to take in ( I am very new to all this too)

Bluprimrose: enjoy your FF meet up!

Jofie: wishinh you all the very best with this cycle!  

Lalaby: It's such good news you have a bpf!  
Gawd I know I havnt really thought further than the one or two LITs and Ivigs I might need but what if it goes on and on....I know what you mean about the £90, it's a bit of a turn off isnt it when you really just need a few questions answered....I was only on for 10mins when I was talked through my immune results and I felt cheated....But I was exactly the same, didnt want to take up too much of his time and didnt want to ask too many questions. Maybe we need to ask from the outset, am I going to get charged for this?
Does Dr G have nurses? He REALLY needs one.

Diane: those numbers are going up hun! Remember, most pg's dont get hcg testes (GP's accept a hpt, then its a wait til the midwifes appt then a 12 wk scan so no hcg monitoring at all so the stats only really show hcg for 'problem' cases cause it's only us who get monitored....We are all praying for you!  

Sobroody: The bloods can come back quite quickly form Dr G.

Cozy: wishing you all the best with it all, sounds v complicated, but imagine the results at the end of it all.

Sprinkles - Hope that your scan goes well, 

Nicaad: hurray for the big O. Hope you get those needles sorted...

Bankie 

xxx to everyone


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## lalaby123 (Sep 21, 2008)

Mag it's good u r getting both done same day get them out the way I took nurofen for biopsy but I felt every scratch so anything stronger better know ..... Hopefully more m/c for u after immune treatment but yes be prepared to hav treatment up to 26 weeks of pregnancy to prevent m/c 


Saffa I didn't know about clexane tests and haven't had to do them so far but yes I go to London to see dr g but not often this cycle I hav been once for ivig before transfer and once on Friday wen I got my bfp u can ask him for prescription for ivig/ intralipid and hav it done at home through healthcare at home they r v good and easy to arrange u can also hav bloods taken locally he gives y the form and u send it on the post 

Sprinkle how was scan??


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## Sprinkles (Nov 6, 2008)

Jofie ~ sorry thanks for clarifying about the needles

Diane ~ good news that levels are rising hun, still praying 

Lalaby ~ good luck for Monday levels and 30th November will be here before you know it 

Bankie ~ like you say good job you are organised and that you have the time to get the gestone, the logistics of getting everything we need is a marathon in itself!

Sobroody ~ you should be ok with time I would guess as if you’re down regging as well you can still do some of the drugs whilst you’re doing that.  Sorry cant help on the unk’s as I’ve not had that done but have had humira, and did put my tx off by 1 month to fit it in along with LIT. 

Niccad ~ great news on ovulating, hope you get the needle situation sorted, looks like there are definitely a few of us having problems with the gestone and needles!

Cozy ~ is your screen jumping because of compatibility, if you click on the button next to your address bar at the top of the screen that looks like a piece of paper ripped in half horizontally, called Compatibility View, before you start typing your post it should correct itself.  Hope you get your travel arrangements sorted then that’s one less thing for you to worry about x

Saffa ~ I had clexane and never had a retest to see if it was working.  Retests are only for humira and LIT as far as I know unless you want to know if any intralipids/IVIG is working also, but not clexane on its own you just use it.  You’ll know if it is working as you potentially will bruise more easily, or if you bleed it will take a little longer to clot and stop, this is because the clexane thins your blood.  Hope that helps.

AFM well scan this morning shows that my follies are taking a little time to grow, out of my 16 only 4 are ready to go with 2 coming up slowly, bit disappointed as I remember was told to half everything from EC, to fertilising, to dividing and putting back.  Had call this afternoon that they’ll leave me another day, so trigger shot tomorrow night hopefully, they’ll call me back tomorrow to tell me what time to do it and in for EC on Tuesday.


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## Diane72 (Oct 29, 2007)

Hello All,

Sprinkles, sorry to hear that your follies aren't all growing, sending them a last growing spurt vibes   

Saffa, Care let me have bloods taken locally and I just tell them the results, I'm sure Mr. Gorgy could do something similar. As the others have said I've only had re-tests on LAD/immunes, never for clexane. 

Mag, sorry to hear how you were feeling, miscarriages get no easier over time, they just serve to remind us what we don't have in our lives, it is so tough emotionally.

Lalaby, Good luck for 30th Nov. really hope it all goes well. Hope you are feeling a bit better

Niccad and everyone else hope you track some of those gestone needles down. I looked today on Marleybone High Street, it was the pharmacist opposite Waitrose I bought needles/syringes without the need for a prescription that other time.

Cozy, hope your screen get sorted-very frustrating

BP, hope you enjoyed your ff singlies meeting?

Sobroody, I'm sure you've plenty time good luck with your appointment with Mr. G.

Hugs to everyone else

My scan was not very hopeful today, although I'm 6 weeks 1 day, there is only an empty gestational sac that measures 5 weeks 2 days, Mr. Gorgy wasn't too hopeful about it continuing into a viable, healthy pregnancy, but suggested a scan in 10 days. I just wish now that it would be over either way rather than the torture of 'waiting'  .

Diane x


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## lalaby123 (Sep 21, 2008)

Diane sorry to hear scan wasn't great        it must hav been so difficult for u and yes the waiting is torture but on the plus side u r not having signs of miscarriage so maybe it will grow slowly I really hope so anyway.... next 10 days r going to be tough for u try to stay as calm ad u can ...easier said that done

sprinkles hopefully the few you'll get will be top notch quality and stick remember only 6 of mine had grown big enuf by EC but out of those we got two good embies and looks like both hav stuck for now!!!


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## Pinpin (Nov 4, 2008)

Hi girls

Firstly Diane    I am sorry the scan this am didn't show a heartbeat. I must have seen you there today as the waiting room was full? I was the blonde girl in the purple coat. I can't imagine how hard this is for you and I really wish there was something we could do to make time go quicker. Don't loose hope maybe it is being a bit slow and needs a few more days to show a heartbeat.    

I saw Dr Gorgy this morning as well and he has managed to speak to Dr Tsagaris whilst i was with him. He asked me to tell you girls on here that he has managed to book all the girls who he was trying to book in for Tuesday 17th Nov and for Tues 1st Dec.

I guess if you are one of these people then you'll recognise yourself.  Dr G worked some sort of miracle as it was absolutely impossible to get hold of Dr Tsagaris the whole week.

My DH and I have just booked our flight now with BA (a small fortune!) but now booked in for donor LIT on Tuesday 17th in the hope that this will help keep our BFP.

If anyone is also going on 17th on BA flight arriving in Athens at 13.40pm would you like to share a taxi with us?

Dr G did say he was going to seriously look into doing the LIT himself as it's getting so hard to have it organised for all of us  that would be really great when he does!

I had first scan with Dr G this am and there were 2 sacs, 1 with a nice heartbeat but the other one was too small however Dr G said not to give up on it and to think of it as a bonus and he wants to keep an eye on it on scan at 8 weeks.

Lots of love
Pinpin x


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## lalaby123 (Sep 21, 2008)

WOW congratulations Pinpin....that is great news ) one heartbeat and a bonus sounds fantastic I will be very happpy if I get the same result in 2 weeks....could you see them yourself? year the heartbeat?? and how come your clinic is not doing your scans for you


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## Diane72 (Oct 29, 2007)

Hi Pinpin,

Congratulations!! 

Were you sitting by the door on the 'hard chair' with the Asian family next to you? I have dark hair (Scottish origin) and was wearing a black velvat coat with a stripey jumper dress and boots on, sitting on the hard chair on the other side of the Asian family while DH had to stand for a while and then moved to the couch opposite when DH managed to get a seat in the far corner window side. Thanks for the  

Lalaby thanks for the  

Diane x


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## Pinpin (Nov 4, 2008)

Thank you Lalaby and Diane

Diane - yes it was me and I remember seeing you   It's nice to put a face to a name. I am     for you that the little beanie in there catches up like you did with the HCG numbers.

Lalaby - we saw it on the big screen Dr G showed us the 2 sacs first and they looked like black holes shaped like a rugby ball and then he zoomed on the inside of the first one and showed us a white shape with a rapidly flicking white dot and that he said was the heartbeat. There was no sound so we couldn't hear it but he let us watch it on the screen for a bit. Then he said the second sac looked small and when zooming he couldn't see anything inside it so that's when he said it doesn't look good for this one at this stage but he has seen things progressed well before so to keep an eye on it and give it some time. I hope that this little one and Diane's little one too are just being a bit slow. Fingers crossed !
He said he is more concerned about getting things under control on the LAD and NK cells side as if the 2nd one has stopped it is for a reason and he doesn;t want that to cause the second one to do the same...
It's a never ending waiting game isn't it... 

Pinpin x


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## mag108 (Jun 28, 2008)

Diane: I am really sorry to hear that. It's very hard living with that incertainty (I had it for 3 wks last year).
Just keeping everything crossed for you. Dont give up hope yet even though that is easier said than done, sending you a massive hug  


Off out tonight to a 50th party, he's a great guy and we are staying with friends...

Pinpin: Have I said already? Today I have been a bit braindead...Very happy for you and your little one(s)!
Have pm'd you


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## lalaby123 (Sep 21, 2008)

Thanks pinpin i hope the other one catches up and show it's heart next time round   meanwhile take good care of them both did u hav to hav ivig or intralipid after bfp??


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## Pinpin (Nov 4, 2008)

Lalaby - Dr G gave me ivig on day of BFP and another ivig today.  When will you be having your first scan?  Has it sunk in yet? 

Mag - I got your pm with the details. I will ask for an appointment for you when i'm there   I hope you have a good time tonight!

Pinpin x


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## bluprimrose (Sep 1, 2009)

diane, i can't imagine how you must be feeling.  as always am     for you and your little bean and just hope that it's a slow but strong starter.    

pinpin - also     your second little one catches up with it's twin and both are strong and sticky!    

sprinkles - i hope your follies get a growth spurt overnight and you have a good crop for ec.       

mag - hope you're having a lovely time at the party.  

afm - i had a great afternoon at the singlies meet thank you - i felt rather emotional when i arrived, being in a room with so many people going through or who have been through the same thing.  and it was really nice to put faces to names.

as usual i have a question!  sorry ladies...  right, as i've already told you, dr g has said i should start 40mg of clexane on day 5 or 6 of stims (i guess i'll start on day 5), then stop the day of trigger and start again the day after ec at a dose of 60mg.  i just wanted to ask, on the day of et, when should i take my clexane?  normally i'm told to take it a good few hours after et (around 6).  i've never started it before et before.  i'll have been taking it in the mornings but am wondering whether to take it in the morning before et or wait until a few hours after et - which will mean that the timings will be out.

also (and i can't remember whether i've asked this one or not) - do you prefer a single dose of 60mg or a  40mg in the morning and 20mg in the evening.  how do you ladies who have had a 60mg dose of clexane manage it?

as always thank you in advance for your help.  

   to anyone i've missed and thank you again for your cyber friendship and support.

bpxx


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## lalaby123 (Sep 21, 2008)

Bp glad the meet up was good   re clexane timings it doesn't really matter what time u take it I was taking it in mornings before EC then swapped to nights after ET 

Pinpin no it hadn't sunk in at all I'm only cd28 so v early days  I think it will feel more real wen I hav the scan


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## bluprimrose (Sep 1, 2009)

Thanks v much lalaby.  Was that because you shouldn't take it in the morning too close to et?

Just seen your hcg numbers!!  wow! 

bpxx


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## lalaby123 (Sep 21, 2008)

They never said wen to take it so I don't think it matters with ET as unlike EC no needling/ risk of bleed involved however to be on safe side I swapped to evenings my clinic r v thorough so I'm sure if it mattered wen they would include in my notes


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## Trueblood (Aug 31, 2009)

Can someone please pm me mr gorgy's email address as he would like to refer me to athens for lit.

Does anyone know if there is any spaces left for the 1st week in decemeber.


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## Han72 (Feb 15, 2007)

Hi 

just a quickie to send Diane LOADS of        and        that bubs is just a little bit slow and you'll see the hb on the next scan    


Pinpin - again        and        that twin 2 wakes up and is waving at you at the next scan       

I think I may have neglected to send HUGE heartfelt congratulations to Lalaby on your BFP!!! Well done honey!

Love hugs and apologies to all  I have missed but am suffering from 2ww brain 

Have a lovely Sunday!

xxx


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## Ourturn (Oct 8, 2008)

Pinpin - congrats on the great scan  

Diane - don't give up hope yet. Your numbers are at the right level to see a sac. I think you have got a late implanter. I'm sure you're little embie will catch up soon    

Mag - what did the mc results say? For the biopsy my gp prescribed diazapan, I took 2. Its a sedative which can be presribed as a sleeping tablet. Think its similar to valium. Its not a pain killer but helps you and your muscles relax. If you go to your gp ask if they can prescribe some strong pain relief. I took ibruprofen and paracetamol but wish I had taken something stronger. Maybe Mr G can recommend something?

Hi everyone 

Mr G seems to prescribe gestone a lot, why is that?

Anna x


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## lalaby123 (Sep 21, 2008)

Trueblood it's *

nixf    thanx and sending u lots of     on your wait xx


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## Cozy (Jul 17, 2008)

Diane,

sorry to read you just have a sac. I hope and   I am wrong, but it sounds like you may have a blighted ovum. Was that mentioned?

I really hope that things turn around for you and you get a nice surprise on your next scan. Personally I would have a scan in 7 days and not 10, would you be able to get an earlier one?   

Take care  

Cozy


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## Diane72 (Oct 29, 2007)

Hello All,

Thanks for your   and   . 

Cozy, yes unfortunately I have been here 4 times before in the last couple of years. Mr. Gorgy didn't use the 'blighted ovum' term but I've never had a heartbeat so there is obviously a consistent issue despite all the immune treatment etc. I've had (although the other times the HCG start point and rises were good, so this one is slightly different). I have an NHS hospital appointment next Thursday so I'm going to see if they can give me another scan then.

Trueblood, Mr. Gorgy is away on holiday for the next week. Also i have always found he is more accesible by phone then e-mail.

Sobroody, not sure why Gorgy prescribes gestone but I know in my case (based on blood tests from ARGC) it raises my progesterone levels much better than the pessaries.

Nixf01, sending you lots of    

Lalaby, wishing you luck for the scan

BP, I have taken clexane in the morning or in the evening in different rounds, I think the most impostant bit is just keeping it consistent. Glad the singlies meeting went well.

Mag, hope you enjoyed the party?

Pinpin, sending you lots of   for the next scan

Hugs to everyone else,  

Diane x


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## Sprinkles (Nov 6, 2008)

Hi ladies

niccad ~       for 2ww, love your reference to rainbow by the way x

Just had the call to tell me to take trigger tonight at 9.30pm and then in on Tuesday morning for EC.


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## lalaby123 (Sep 21, 2008)

Sprinkled happy triggering   hope u get great eggs on Tuesday xxx


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## mag108 (Jun 28, 2008)

hi everyone and sending anyone who needs it a big hug...

Party was mixed. Out with my lovely friend who adopted last year and we had a big chat about all that (orientated around me if I ever go down that route...) a bit stirring for a sat nite out......also out was an ex colleague of mine but mutual friend of hers who's adopted 2 siblings and seems to have forgot her own IF issues...(loves her new boss because she is a mum...so what about the rest of us non mums, are we unlovable, do we not 'get it?'...-...or maybe that's just me being sensitive) so I did have to listen to them going on about their little ones which I can do for a about 5mins....Then there is a couple we know who are 5mths along and they were out too and he knows the score with us (m/c's), but is high on the idea of being a dad and managed to drop that in the conversations all nite (he is sweet but I had had enough by that point)...

Had a bop, chatted to men mostly who I suspected wouldnt talk about kids (computers and buddhism).....
xxxx


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## lalaby123 (Sep 21, 2008)

ahh Mag I haven't held a normal conversation for so long I don't  think I could go to a party these days as my head is FILLED with fertility....i think you did the best thing chatting to the men ;-) 

BP, i've met another lady on another thread who was at the ff gathering  yesterday she said she met you but didn't get to chat as too many of u :-( small world......


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## mag108 (Jun 28, 2008)

thks Lalaby, know what you mean. On the inside my life is full and busy with IF stuff, but I dont talk about ANY of it so from the outside I look like I have NO life!

Question; Are any of you at Lister? The test CD69 but Dr G doesnt?. ....Just wanna see if any of you have had this test done/ If my uNK's come out + maybe the tx will be the same?

Also I wonder if any of you have come across recent studies on IVIG and LIT?
P


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## Saffa77 (Feb 6, 2008)

Ladies

Once again thanks for all your advice!!! what would i do without yous!  The reason why i was asking re: clexane tests was because i had read that somewhere.  Well tomorrow off to GP to try get some of these meds on NHS hahahahaha he is going to look at me and think i am mad!  PS my script from Dr Gorgy will be 11 days tomorrow is that still ok to take to pharmacy ( thats if i dont get them on NHS)  i was thinking that some scripts 'expire' . Also if i get all these meds tomorrow (im guessing they will need order some) will they last until end of Jan as that is when i am going to need them- just worried that if I take this script to pharmacy in Jan they will say script is too old.

Sx


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## bluprimrose (Sep 1, 2009)

evening all

and what an evening it is with x factor and i'm a celeb!!

lalaby, who was it you were chatting to that was at the singlies meet?  i really wanted to speak to everyone but there just wasn't time to get round everyone properly.  it was a lovely afternoon though - amazing to meet and be with so many strong ladies.

diane, hope you get your scan - and some answers.  am still     your little one is just taking his or her time.  you are a very courageous lady.    

thanks re the clexane diane - have you ever split the daily dose - ie. 40mg a.m./20mg p.m. - of taken it all in one go?

sprinkles - good luck with your ec - how exciting!  you must have just taken your trigger!!

love to everyone else.

bpxx


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## deegirl (Jan 17, 2009)

Hi girls
Been so encouraging to hear about all the positives lately, hope it continues like this!  Lalaby a big congrats to you...you must be on cloud nine!  Diane I'm really hoping things improve for you, hang in there.  Pipin congrats to you too!!!

I am planning to cycle with Dr G in July '10.  I'm trying to decide whether to do my cycle in Belfast and use Dr G for immune support or stay in London for a couple of wks and cycle with Dr G.  What is putting me off Belfast (Origin) is their success rates (average 22% for under 35s per treatment cycle started and 14% per embryo transferred).  Does Dr G use the LWC?  Is this the same as CRM?  Has anyone else done the full thing with Dr Gorgy?  Any advice would be greatly appreciated.  

Thanks!


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## lalaby123 (Sep 21, 2008)

Thanx dee  I was on cloud 9 for one day now I'm just keeping my feet on the ground till can see all ok in a scan in 2 weeks 
re cycling I haven't done ivf with dr g but given the success rates in Belfast I wud do everything with dr g he will monitor u closer but maybe others can advise u better xxx


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## ells (Mar 19, 2008)

Evening lovely ladies   .

Diane really hope things work out for you hunni.    

Lalaby, I hope the new 2ww doesnt drag too much.  Have you had any ms? 

Pinpin, how are you feeling sweetie?

Dee, have pm'ed you   .  I think your decision may be made by the immune results hunni   .  

Sprinkles good luck for EC.   for some lovely juicy eggies for Tuesday.  How are you feeling?  Are you a bit bloated?

Nix, hows the 2ww?  Sending you lots of       

Saffa, hun, I think with scripts as long as they are within 3 months its okay   .  I am not 100% sure about it but know that I have put in a script that was about that old.  

Mag, we asked Dr G about the CD 69 as our local clinic test for it too but he said that if the other's are high then that one would be too and the treatment he gives for the other issues would cover it off anyway so he didnt feel there was a need to test each individual one.  I guess it makes some sense   .  Hope you get some answers soon.

How is everyone else?  Cozy, Cath, Omni, Choice, Nic's, BP hope you are all okay.  Sorry for anyone I may have missed - still trying to keep up with all the names etc   .  

Well my mum is doing well following her set back in the week.  We all think it was linked to them not sorting out her warfrin levels properly -long story!  They have put down in her notes ' ? TIA ' but then gone on to say ' but no on going symptoms, speech a little slurred but returned to normal this pm.  pt's BP higher then normal' .  So I dont think they really know what it was other than definitely a small blood clot but she seems that she is back on track again.  She;s still tired but thats down to the op and the noisy ward and uncomfortable bed.  They have said that she is probably going to go home tomorrow   but I dont think that I will be able to relax until after Christmas, she has been through so much and the set back really gave us all a scare.  It really shows how much can happen.  She is fit and has age in her favour so we believe that she should make a very good and speedy recovery.  Thank you for your support and kind words ladies   .

Right, better get off to bed, need to try and get a good nights sleep   .

Nightie night all,

Ells


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## hanadiz (Jul 23, 2007)

hi ladies,

I am also thinking of moving clinics to Dr, Gorgy, any advice or insight
I am currently at ARGC but I got 2 negatives there i ve dealt with immune issues there but still nothing...........

any advice on dr. gorggy, will be great? I have an oppointment with him on the 24th for consultation but your insight ladies is very valuable

Hanadi


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## lalaby123 (Sep 21, 2008)

Bp it was mistipop she's on the waiting for 1st scan thread 

Hanadi I will write again later wen in front of computer as currently on iPhone 

Ells what good news about your mum   u must be so relieved phewwwwwwee 

Sprinkle hope u r maturing some lovely eggs for tomoro 

Pinpin hope both embies are growing fast 

Diane sending u lots of    till next scan

love to all else xxx


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## Diane72 (Oct 29, 2007)

I started spotting last night, a bit of red blood followed by dark brown. Lets see what the next 48 hours brings but this is how the miscarriage started the other 4 times and it is the exact same day, 6 weeks 3 days, as it happened last time. 

Diane x

P.S. Hannadi, you already know my views, ARGC's stimulation/egg colllection are second to none but I believe they are not doing enough and have the wrong timings for their immune treatment.


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## Saffa77 (Feb 6, 2008)

Diane -     Hope this spotting means nothing and its just the embies snuggling in!!!!  

Sx


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## hanadiz (Jul 23, 2007)

diane,
just keep holding on,   , its nerve wrecking I know

I am just looking for more views as if dr gorgy stimulation and ec, et as good as ARGC? as i always stimulate very well even at Guys hospital I had 21 eggs, 17 fertilized.....as i ve been asking around about the array CGH but no statistics or any info is provided at all, all the consultants and they didnt advice to test for it, so now am more confused than before..............

all doctors said that there is no reason for me not to get pregnant after we dealt with immune issues, its matter of trying and trying till it works..........

that is frustrating

Hanadi


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## lalaby123 (Sep 21, 2008)

Hanadiz - what immune issues do you have?? I can't comment on Dr G's ivf cycle as I only did my immunes with him but I can tell you that I chose him over the ARGC because of the immune factor. He seems to cover more ground, is a little more aggressive with his immune treatment and seems to be getting good results. Everytime I visit there are pregnant ladies on drips  last time myself included....The other benefit is that Dr G tests your response to intralipid vs IVIG and depending on that prescribes one or both which can save you a lot if you respond well to intralipid. Also he is big on LIT and LAD and a lot of the girls have had this done. He also gives you a very personalised treatment plan and monitors closely. On the down side he hasn't got ARGC's set up of nurses etc. So he does everything himself which means it can be a bit chaotic at times and you find him a bit rushed however when it matters he is always there and will call you over the weekend if he has to. He definitely cares. I hope this helps and he can crack the code for you. Re CGH I think Care are the only clinic offering this?


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## lalaby123 (Sep 21, 2008)

Diane - just read your post. This must be torture for you. I am so sorry you are having to go through this again. I hope the pattern will be broken somehow but it must be hard not to allow the past to take away any hope for this one but please try and hang in to any   thoughts you can find to take you over the next couple of days. sending you lots of       and


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## ells (Mar 19, 2008)

Diane    .  I really hope that you are okay.  Thinking of you today and sending you lots of     .

Hanadiz, we looked at ARGC and they dont cover off all of the immune stuff like Dr G.  The other major advantage is that to Dr G you are not just another number he really does care and taylors treatment to suit you.  

Lalaby, how are you sweetie?  I see it says 4 weeks exactly on your siggy  -how exciting!!

Sprinkles, hope those eggy's are maturing nicely.    

Hope everyone else is okay?

Well my mummy is on her way home yay!!!  My dad has gone up to get her, she cant wait to get home.  We are so pleased.  We are going to be celebrating tonight!!!!

Ells


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## Saffa77 (Feb 6, 2008)

Ladies

Sorry for the me post again.....

Ok so just got back from GP with my 'script' from DR G - well he looked at me and said firstly this isnt a script.... then he is like mmmmmmm dont know if I can prescribe this especially the prednisolne but maybe the cyclogest only..... so he suggested I take the 'script' from Dr Gorgy to pharmacy and ask them what the GP could prescribe?!  Now I am hoping the pharmacy will be able to prescribe with the Headed letter paper with Dr Gorgys meds on there?  Have you ladies ever had issues going to the pharmacy with that piece of paper?  I had thought it definately isnt a script type.  GP didnt even know what most the meds were and said it was quite high dosages etc now I feel like an alien sorry LOL taking all these meds - hope they dont do me no harm as doctor abroad is not going to know anything about these meds....

PS i managed to get the folic acid 5mg - anything else i should take with this?

Sx


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## lalaby123 (Sep 21, 2008)

Saffa sorry your GP wasn't very helpful     they can be rubbish some of them....mine didn't question it so i can't comment and i don't  understand why he has sent you to ask the pharmacist what a GP can prescribe?? surely a GP should know that better than a pharmacy?!!


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## Saffa77 (Feb 6, 2008)

Hi lalaby - liking the new ticker!!! you go girl!!

So I shouldnt have a problem then with the headed letter 'script' then from Dr Gorgy at the pharmacy?

Sx


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## lalaby123 (Sep 21, 2008)

you shouldn't but then you will be paying private prescription prices....


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## Saffa77 (Feb 6, 2008)

Surely all you ladies have the same 'script' from Dr Gorgy when you go to the pharmacy?

PS I am doing a bit of a freak out with taking clexane now as read up again that one should get tested 5-7 days after taking clexane to check your red cell platelets?  Am just so worried about all these meds i am taking and just dont feel right taking this behind the portuguese doctors back in case something goes wrong..... am I stressing over nothing?  Have any of you ladies had any serious side affects to any of these drugs?  Sorry jsut having one of those days.

Sx


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## lalaby123 (Sep 21, 2008)

Saffa - I took Dr G's prescription to my GP receptionist and asked it to be converted to NHS so I have never taken it to the pharmacy but i don't see why it should cause any problems - perhaps others can advise better
re Clexane, where are you reading this stuff is it on the clexane leaflet? if so then don't worry.....all of us are on it and it has become quite a common drug in ivf cycles and no one has had to test for platelets.....I am assuming when you first started IVF they did a full blood count and if there was a problem with anything it would have shown so if all was normal then you should be fine......the drugs ie aspirin, clexane are pretty and tame safe and have v little side effects, the steroids do have side effects eg insomnia, bloated face, excess hair, increased appetite/weight but they are safe at the doses prescribed provided not taken for a very long time ie longer than 6 months. I do suggest you take 500mg calcium when you start clexane and prednisolone as they have a bone thinning effect over prolonged use and its best to err on the side of caution and supplement with Calcium. And don't worry about not telling your Dr in Portugal. If anything you are doing him a favour by helping his chances of success!!! I know this call all be very worrying at first but soon you will get the hang of it. xxx


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## Saffa77 (Feb 6, 2008)

Lalaby - oh thanks for your lovely message you sure do know how to make me feel better.  Thanks for all the info.  I am going to take the 'script' to the pharmacy this pm lets see what they say.

Thanks for the calcium info too - I should be able to get that in the vitamins section in boots am i right?

Thanks again.

Sx


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## niccad (Apr 28, 2009)

Wow – so much activity over the weekend!! 

Mag108- I’m impressed that he called so late on Friday. Guessing he’s having some last minute craziness so that he can escape. Hope that he didn’t get you too down... Glad that the party was ok – and that you escaped into the land of men to save your sanity. Not sure if I’m the only one who has opted for a hermit lifestyle. I feel I have nothing to say to anyone anymore… I wonder where my personality is hiding!?

Saffa – I haven’t heard about the clexane tests? Did you get the needles sorted out? I took the script to the pharmacy and they were fine about everything. My GB gave me the gestone but only as they’ve been informed about my NHS FET… I didn’t have any issues getting the meds – only the needles (but in the end I just called around a zillion local pharmacists). Side effects – well the clexane has made me bleed (but on the plus side at least I know it’s working). I also have some pretty impressive bruises (feel like a child in the playground who’s scrapped her knee and wants to show it off). The steroids have made it difficult to sleep but no beard as yet & my appetite is the same. I’ve been trying to eat less but my weight has stayed the same. The gestone – well I only started yesterday so it’s hard to tell but my vision feels a bit blurry and I feel a bit odd, but then I’m not sure if that’s the gestone, clexane or pred!?! On lalaby’s suggestion I just went and drank some milk (love the way I react to this site!)

Sprinkles – hoping that the follies are growing nicely and good luck for EC tomorrow.. I hope the trigger sort went ok & you’re enjoying a relatively drug free day. Did you get the gestone sorted out?

Diane – I am so so sorry to hear about the scan and now about the spotting. I really feel for you as it’s never ending waiting and waiting and waiting. This whole process is such a nightmare and we’re all faced with constant hurdles to overcome… I just wish all those sodding hurdles would just fall to the ground for a bit so we can all have a good clear run (that or some of those really springy shoes so we can just sail over them) This should all be so much easier. We’re all here for you & hope that we can help however possible… x  

Pinpin – good luck for tomorrow & it was lovely chatting on Saturday. I’m so lucky to have you living so close by – thank you so much for all your help. X

Bluprimose – sorry I can’t help on the clexane questions as I’m just on 40mg solidly now

Jofie – great news that AF arrived and the IUI can start… Praying that you get a good few follies. Did you do ICSI rather than IVF before? 

Lalaby – shame that I missed you (and loads of others it sounds like) on Friday. I’m a bit worried about IVIG (no idea why) – how long did your symptons last for and when is your next dose? The cost is just crazy isn’t it. Here’s hoping that intralipids are what he suggests going forward

Bankie – I’m having similar difficulties getting hold of gestone. There seems to be an issue with the manufacturer. I only have 2 more days worth & then panic will start. Let me know if you have any success… 

Deegirl – if my FET doesn’t work I’ll be cycling with DrG. He uses LWC. I really want to cycle with CRGH but their proctocol is 2 months long & xmas gets in the way… 

Nix – hope the 2ww is going ok. 

Ells – good news about your mum – I hope you have a lovely time celebrating tonight

AFM – well my embies will be defrosted on Wednesday & they’ll call me on Thursday to let me know how they are. All being well    I’ll have ET on Thursday & will hopefully be finished to get to DrG for 3pm for IVIG. 

Hi to anyone I've missed
Nic xx


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## lalaby123 (Sep 21, 2008)

Saffa - yes ask for Calcichew or any other chewable calcium 500mg

Niccad - good luck with the thawing i hope the embies survive and are looking forward to a nice warm home for a change - don't worry about Ivig first time i had it i was also scared but i had no reactions whatsoever....take lots of liquids and food to drinks and eat while you are having it done....i don't know if the reaction i had was to do with ivig or my anxiety over the cost of it for the next few months...in anycase it subsided over night....i think maybe he did it a bit faster this time and it might have been the reason....make sure you ask him to do it really slowly, first time mine took from 12:30-5, this time i finished at 3 so a lot faster.......he will give you benadryl as well to prevent any allergic reactions....I think only a couple of ladies have had any reaction to ivig so far so its pretty safe...headaches are common though but if you drinks lots you should be ok.....good luck xxx


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## lalaby123 (Sep 21, 2008)

AFM i had repeat blood test this morning and am waiting for results to see if hcg going in the right direction....     it is....will get a call any time now......


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## lalaby123 (Sep 21, 2008)

Just heard from clinic my hcg has done what it should hav done and because the level is high they want to scan me this Friday instead of 30 nov!! Though I am relieved I am also worried that maybe it's too high and they r concerned Can this be the case or r they just being thorough and scanning me early to see if one or two sacs?? I guess I won't see heartbeat as I won't even be 5 weeks yet... Glad my 2ww has been cut short though thank u embies thank u xxx


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## niccad (Apr 28, 2009)

lalaby - great news on the numbers... and how exciting to have a scan!! Thanks for the ivig info... guess i'm more worried as DrG is out and it's Dr Eskander (Arkville told me that he's only there for ~2 hours so me asking for a slow drip might not work!!). Anyhow - one hurdle at a time... embie survival first... Deep breath...  
xx


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## Saffa77 (Feb 6, 2008)

Lalaby great news on the numbers - i dont think its anthing to worry about think maybe cos he definately wants to see if there are 2 in there. 

PS ladies why does DR G not have proper prescriptions?  It worries me a bit...

Off to the pharmacy I go wish me luck - wonder what the issue is going to be next.....  Thank goodness I only start my cycle in January!!! cos if it was now I would be PANICKING.

Sx


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## Diane72 (Oct 29, 2007)

My HCG levels have dropped, from 1698 to 1328, 6 weeks 3 days, this is my 5th time and I really think we have now tried everything  

Dx


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## hanadiz (Jul 23, 2007)

oh D, am sorry to hear that     
I know there is no words can make you feel better

just know we are there for you

Hanadi


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## Cozy (Jul 17, 2008)

Diane,

I'm so sorry. I wish there was something I could do to change things for you.

Life and this IVF lark can be so cruel sometimes.    

Take care  

Cozy


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## Ourturn (Oct 8, 2008)

Diane - I am so so sorry       

Anna x


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## hanadiz (Jul 23, 2007)

hello again,
I was looking at the price list at dr gorgy clinic and there is a fee of IVF/ICSI including bloot tests and scan but its mentioned condition apply next to it does anyone know what are the conditions?? i called but the receptionist have no clue what it means??

Thanks 

Hanadi


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## niccad (Apr 28, 2009)

Oh Diane - I am so so so sorry. I just don't have the words to offer comfort... My heart completely goes out to you    

x


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## lalaby123 (Sep 21, 2008)

Oh Diane I'm sooooooooooooooo sorry to hear this aweful news.... it is unbelievable that it's to the day wen u last miscarried it makes me want to becom a doctor and find out WHY?? U get pregnant so easily why don't they stay What immune issues did u hav?? How many goes with immunes hav u had? I wish there was something I could do or say to make u feel better just remember miracles do happen .... Dr g will be very upset I'm sure shame he is away at present sending u lots of         and hope u can get over this pain soon xxx


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## deegirl (Jan 17, 2009)

Firstly Diane I am so so sorry to hear your sad news.  I know how you feel to keep losing the pregnancy, it's happened to me 5 times now (4 natural) very early on, it's just heartbreaking.  

Saffia you asked whether you should take anything with the high strength folic acid.  The answer is 'yes', my last clinic told me that I needed to take a vitamin B supplement when on high strength folic acid.  I think this is something to do with the body having difficultly absorbing vitamin B when on high strength folic acid.

Dee


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## Saffa77 (Feb 6, 2008)

Diane I am soooo sorry    !

Deegirl thanks for the info - GP didnt say anything about a B supplement when on 5mg folic acid.  I have heard of ladies on vit B6 and B12 is this right ladies?  or should I just go to boots and get a B supplement??  

Anyways went to the pharmacay and she looked at Dr G's 'script' and she is like no worries she could get everthing in by end of next week, but i only need it in January so will go back - never thought it would be that easy..... 

Sx


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## mag108 (Jun 28, 2008)

just popped on to say   Diane: I am so so sorry. That is such devastating news. I want to give you a big hug  . Why always at this pt? There must be an answer? I hope you get to take good care a have a few days out of work/committments to recover a little.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


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## Pinpin (Nov 4, 2008)

Diane I am so sorry and sad to read your news        
Why does it happen? It is not fair. Do not give up yet though, how many times have you had the full immune treatment during Tx? I am sure Dr G will have some answers and solution for you. Your determination will get you there I am sure of that. Until Dr G comes back maybe send a PM to Choice4 to see if there anything she can recommend any tests anything that may have been missed?
Thinking of you
Lots of love 

Pinpin xxx


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## Donkey (Nov 24, 2007)

Diane i am so, so sorry      xx


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## Bettysjourney (Jun 11, 2007)

Diane - I just ready your sad news - I am so sorry my love - life just seems so unfair and unjust sometimes - I am always baffled as the cruel way things happen - you really deserve some better luck  .

Love Betty xxx


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## Sprinkles (Nov 6, 2008)

Diane so sorry honey read your news on other thread, there are no words to say how unjust this is all is and how so very very very sorry I am.  Take your time and take care of yourself and DH, am here for you if you need to rant, rave, scream, cry whatever – thinking of you, sending you lots of love and hugs x      

Ells fab news on your mum coming home, enjoy the celebrations

Saffa glad panic over re script.  Understand you being stressed regarding meds but seriously don’t know anything about retesting for clexane and am sure DrG wouldn’t have prescribed it unnecessarily.  If you’re nervous and agitated about your Portuguese dr not knowing about the drugs it could be easier just to mention it to them to put your mind at rest, its up to you really.

Niccad ~ haven’t got needles sorted for gestone yet but have an appointment booked with GP for Friday morning, day after ET to teach DH how to inject.  Mum is coming as well as DH is going away later next week so possibly need her to do it too, its definitely going to be a spectator sport!!!  Looks like we’ll have ET on same day as my clinic don’t do anything over day 2 on fresh cycles, fingers crossed for your embies hun x

Couple of questions re gestone:

I was advised to take day of ET but prefer to come home and chill, and will have pessaries as well to be honest.  Do you think it would be ok to start it the day after ET?

Anyone done their own gestone injection?  If so leg or buttock?

Lalaby great news on your levels and getting your scan earlier x

Off to bed soon, very early start to get to clinic in time, and not looking forward to it all.  Back on in a couple of days or maybe tomorrow if feel ok.

Diane take care of yourself hun x


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## bankie (Dec 27, 2007)

Diane - my heart sank when I read your news, I'm so, so sorry.       

Sprinkles - I hope that all goes well tomorrow, I'll be thinking of you hun.


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## bluprimrose (Sep 1, 2009)

diane, i'm so so sorry.  i can only imagine how you must be feeling right now and wish there was something i could do to help.  please take care of yourself and if there's anything at all i/we can do you know where we are.  this is just so unfair.

lol & lots of hugs

bpxxxx


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## Diane72 (Oct 29, 2007)

Just wanted to say 'thankyou' all for your kind words and support, I appreciate it. I think we'll just hide from the world for a while.  

Sending fairydust to you all for your journeys,     and lots of hugs    

Diane x


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## ells (Mar 19, 2008)

Diane      , I just dont know what to say hunni.  We are here when you are ready to come back.  Thinking of you hun.
Ells


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## ells (Mar 19, 2008)

Sprinkles, good luck for EC today.  Hope you get lots of lovely juicy eggy's.    

Lalaby, do you think your numbers could be indicating more than 2 ??   .  One of the lady's on my local thread had a similar story re early scan - she 3 little boys last month!!!!  

Morning to everyone else, hope you are all well!  

I still havent had my hysteroscopy yet, I must pull my finger out and get it booked in, I was going to get Dr E to do it as it may hurry along our cheque!  My mum was home yesterday, she looks really tired where she hasnt slept but hopefully so rest, a comfy bed and lots of TLC and she will be feeling back to her old self by the weekend!

Hope everyone has a good day,

Ells


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## lalaby123 (Sep 21, 2008)

Sprinkles wishing u a good EC hope u get good quality eggs xxx

ells wishing ur mum a speeeeeeedy recovery and dont scarecthe he'll out of me with 3 !!!!! 

Quick question ladies I hav had the level 1 tests done but to this day I don't know if I hav antiphospholipid syndrome or not does anyone know which of the tests is for this?

Also does anyone know what should progesterone level be in early pregnancy? I am having blood test today 

Thank u xxx


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## lalaby123 (Sep 21, 2008)

Hav just realized I do hav antiphospholipid syndrome afterall!!! Good thing I'm on the blood thinners


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## Saffa77 (Feb 6, 2008)

Sprinkles - can the gestone injection be done on the thigh too??  seeing as I will be doing them myself I would much prefer the thigh.

Sx


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## Jofie (Aug 7, 2008)

Diane, if you see this, just wanted to say how very sorry I am, what devastating news. There is nothing to say, but I will be thinking of you.  

niccad - yes, we have done ICSI both times, the reason being so few mature eggs collected (3) and supposedly a higher chance of fertilisation with ICSI. DP's sperm is fine and we've had 2 out of 3 fertilise each time. I wonder if last time we'd have done better to take the risk of them not fertilising and maybe ended up with better quality embryos with IVF, but you go with what the doctors advise, don't you?

Sorry for the lack of other personals - I have been keeping up with the thread but finding it hard to keep everything straight in my head at the moment.  

As for me - haven't been around for the last few days, mostly because things have been a bit of a struggle with DP. He is having a hard time getting his head around going on with treatment straight after our recent failed cycle. He gets really down and then negative about the whole thing. I've also been feeling quite exhausted physically. 

I read one of Choice's old posts and have now cut out dairy completely, not eating anything cold and only drinking hot water! Along with the Chinese herbs and hot water bottle treatment, it seems to be working, but I'm a bit anxious because since I started stimming for the IUI I've been getting a lot of pain in my ovaries, particularly at night. I've never had anywhere near this amount of pain before - I had to take paracetamol last night and I'm pretty good at tolerating pain usually. Hoping it just means I'm responding better to the stimming drugs for a change but I'm also a bit concerned in case my ovaries are still knackered from last month's tx and I'm making it worse! Can any of you lovely ladies who usually respond well tell me if this pain is normal and could just mean I have good follicles growing?

I also have a gestone question - has anyone been tested and found that they respond better to cyclogest than gestone? I have a feeling I react better to the pessaries than the bum bullets (injections). Nothing to support this mind except that I got pregnant without gestone, and didn't with it... and I'd rather not have to take it if it's not necessary for me. Can I ask Dr Gorgy for a test of progesterone levels?  Has anyone done this?

Saffa - I have read that the thigh is more painful for the gestone injections because you use those muscles more and also the backside is better because it's a deeper muscle. It's actually not that hard to inject in the buttock - well it's more like the hip really. 

I go in for a scan day 10 which is Monday. Just hoping I don't ovulate early as I'm not on suprecur or buserelin. Weird how everything is so much less precise for IUI.


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## niccad (Apr 28, 2009)

Jofie - my last cycle I could really feel my ovaries aching... they felt heavy and like they were buzzing. I'd never felt them before but am now very aware of where they are. As time went on it felt like I was carrying 2 massive bags of water around. I never had to take painkillers but they did keep me awake. 
No idea on the progesterone question I'm afraid although i think bum bullets is the nickname for the pessaries as they looks like bullets and go up your . I've read that gestone is more effective & am convinced that the cyclogest didn't work for me last time. I'm sure DrG will be able to test though... Good luck xx


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## Jofie (Aug 7, 2008)

Thanks niccad - reassuring to know I'm not the only one. I do have adhesions, so that could be adding to the pain. 

I've heard bum bullets for the pessaries too, but I don't put the them up 'there' if I can help it . Gestone injections are the real bum bullets to me because of the horrible lumps you get under the skin. It just doesn't feel like it can be absorbing properly when it's all in a lump like that, but who knows? I will definitely ask DrG if I can test. He never explained his reason for putting me on gestone last time.


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## Han72 (Feb 15, 2007)

Hiya

sorry to crash in and out, just to say that, yes, Gestone can be injected into the thighs as well as the **** and I've found the best way to avoid the real aches and pains is to alternate, left thigh, left buttock, right thigh, right buttock basically by the time you get back round to where you started, the ache/lump has disappeared!  Also if you're unlucky enough to have to do the jabs yourselves, it's much easier doing it in the thigh!

Love to all!

xxx

PS Oh and yes, the pessaries are known by all sorts of names including bum bullets and a recent addition which made me  - "[email protected] candles"   

Love and luck to all!

xxx


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## Ourturn (Oct 8, 2008)

Jofie - sounds like you have a lot of follies growing! Can I ask why you gave up diary please? I know Zita W does not recommend it, but I have been on organic diary for the past 3 years and thought that was ok? 

Anna x


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## Diane72 (Oct 29, 2007)

Jofie,

Just to say thanks for the   and yes ARGC did testing of my progesterone every time they did HCG, which was every 48 hours on my cycles with them. The pessaries did not raise my progesterone levels enough, which is why they switched me to gestone injections, which have always given me nicely raised levels on blood testing (so the opposite of what you are feeling).

Hope this helps,

Dx


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## Saffa77 (Feb 6, 2008)

ouch for gestone on the thigh tho??!  would you use the same green needle then?  Wowsers


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## Han72 (Feb 15, 2007)

I'm on the slight side (tho not for long if I keep scoffing like I am at the mo!) so I can get away with the blue needles but to tell you the truth, once it's broken the skin I can't really tell the difference. Some days I can't be bothered to swap em round and just use the green (that's 4cm length, not 5 mind you cos they're proper scary!)

Anna babes, there is a school of thought that dairy doesn't help things but I've always been of the mind that a bit of what you fancy does you good! Esp if it's organic! And if dairy was really that bad, why does the ARGC recommend a litre of milk a day during stims...?  And how come the land of soft cheese (not to mention red wine!) has the highest fertility rate in Europe? 
xxx


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## Ourturn (Oct 8, 2008)

Thanks Nix..I was told to UP my diary intake as my bone density was not as good as it should have been, and drinking milk is the best way of ensure you are getting enough calcium. 
Actually with so many of us on steroids/heparin we need to all make sure we are getting enough calcium as these things can cause bone thinning. 

OTD is around the corner, are you tempted to test early? 

x


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## Jofie (Aug 7, 2008)

Anna - I'm mildly allergic to dairy (increases my antithyroid antibodies), so I was advised to cut down by my thyroid doc, so wasn't having much anyway. I've cut it completely out for now because I'm trying to eat / drink only 'warming' stuff to improve blood flow. Apparently dairy is bad for this if you tend towards stagnation / poor circulation, which I do  . But if I could I'd be drinking lots of milk for the protein like ARGC advise...I worry about not getting enough - there's always something isn't there!

Diane - I think I am worrying about the gestone because I didn't get my levels checked during my last tx. I'll ask for a test when I go in for my scan appt. I'll gladly put up with the needles and the lumps if it's doing what it's supposed to!


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## lalaby123 (Sep 21, 2008)

Ladies just to  let you know I too have been off dairy since January this year....mainly because it caused me excess mucus in my chest/sinuses etc. But since I have learnt that it promotes inflamation and damp (in chinese medicine) in the case of us immuney ladies we want to diminish inflammation and damp of any kind therefore I have kept it to minimum ie just natural organic yoghurt


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## lalaby123 (Sep 21, 2008)

me again, and another me post am afraid but only today I have found out that I do infact have Antiphospholipid Syndrome. I knew i had anticardiolipin antibodies but Dr G never told me that means that I have antiphospholipid syndrome and is a major factor in my infertility. I looked it up today and realised anticardiolipin antibody is a form of APA. I am just so relieved to have finally put all the pieces of the puzzle together and understand the reasons for my previous miscarriage and infertility ie APA, Antithyroid antibodies and elevated NK Activity.


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## hanadiz (Jul 23, 2007)

lalaby,
oh good to know the reason for your issues,
but if you are on clexane it should solve the issue or am wrong??
what Dr G advice you to do??

I wish they can tell me what is wrong?? why I am not implanting and if I did it ends up in chemical pregnancy or they stop growing and end up in silent misscarriage

Hanadi


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## lalaby123 (Sep 21, 2008)

Hanadiz yes The aspirin and clexane and steroids should be dealing with this I just didn't realize anticardiolipin was the test for APA dr g knew I had raised anticardiolipin which is prob why he had put me on the drugs anyway he is very good at adressing things just not the best at explaining...did u see my reply to your queries a few days ago? I hope they help u in your decisions I think it's def worth a consultation with dr g for u xxx


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## hanadiz (Jul 23, 2007)

thanks, but I didnt see your reply
I will look for it now,
I will see him on the 24th after my follow up with ARGC and get my notes from there

I am thinking seriously to try with him,
do you have any clue how much does it cost? including the immune ++all the other issues blood tests

I would really appreciate if you can shed some light on the budget? I looked at his price list, and he has an option of ICSI including blood test and scans costing 3800£, but condition apply, when I called his receptionist she had no clue about the conditions..........

Hanadi


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## hanadiz (Jul 23, 2007)

i found your reply,

Thanks


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## lalaby123 (Sep 21, 2008)

I'm afraid I can't help with cost of a cycle as I didn't do mine with him but I think it's cheaper than argc also with him u hav the option of intralipid which can save u a bit .... it's good u r seeing him next week i'm sure he can advise u re costs make sure u go with lots of questions as otherwise he doesn't say much I really hope he can help u let us know how u get on xxx ps what immune issues do u know u hav


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## lalaby123 (Sep 21, 2008)

Sprinkle hope EC went well today and u r resting up xxx


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## Jellybaby (Aug 10, 2007)

Hi ladies,
Do you mind if I jump in here?  Feeling so   at the moment and would just love your advice really.  Have posted over on immunology board too but would welcome your responses too if that's OK?
I am thinking of making an appointment with Dr Gorgy to investigate immune issues but am not 100% certain that I am a candidate for testing IYSWIM.  Here is my history:
I am 29 (so is DH) and we have had ICSI in Bristol resulting in the following:
ICSI 1 - BFP but early m/c / chem preg
FET - BFN
ICSI 2 BFP but early m/c / chem preg
ICSI 3 - BFP and DD born healthy at term
FET - BFP but early m/c / chem preg
I always produce plenty of eggs (16, 21, 15) and make "perfect" looking embryos - they just don't seem to stick around  except when I got pregnant with DD).  I am still waiting for Dr Beer's book to arrive but having looked at things on the net, I'm not sure if I need to get tested or not?  If I had started to miscarry repeatedly AFTEr having DD, I think I would be more certain because I know immune issues can develop AFTER delivering a healthy child BUT I have carried my DD without steroids and other drugs in between my chem pregs .  I have also had a sore throat / cold symptoms on all of my BFP cycles BUT I had this with my DD too .
I hope this makes sense as I can't stop   today and am not thinking completely straight.  I am petrified as I don't fully understand immune issues tbh .
Would love your opinion / advice,
Thanks, JB. x


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## lalaby123 (Sep 21, 2008)

Hi jellybaby I would def get immunes tested given 3 chemical pregnancies it's great that u had your DD   but something is def stopping your embryos growing 
hav u had your level 1 tests done? U can do these through your Gp and then do level 2s with dr g 
dr beers book will help clarify things a bit for u alsoread the first two threads on the investigation and immunology forum Good luck xxx


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## Jellybaby (Aug 10, 2007)

Thanks labby and BIG congrats to you .  My Bristol clinic dismiss 'immune issues' but did send me for the following tests after my 2nd chem preg:
chromosomes (DH also had his done)
Thyroid function
Hb A1c
Full blood count including platelets
Autoimmune profile
APTT and lupus anticoagulant
Thrombolia screen
I was quite shocked to see the "autoimmune profile" and am not sure what this test involved as like I said, my clinic dismiss the immune issues theory.  Maybe I'm not giving them enough credit?  This test required just one bottle of blood according to my list.  I'm guessing this isn't immune tests that others have had?  Do you think there are any other bloods that have been missed?  Are these the level 1 tests?
Thanks,
JB. x


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## hanadiz (Jul 23, 2007)

lalaby,
apparently i have NK cells , first time i tested they were border line but the 2nd time they were a bit high
i cant remember how  much but will do when i get my notes from ARGC

I know with Dr G i will save on the IVIG side (hoping it works for me and I dont need IVIG again)

may I ask you why you didnt cycle with Dr G? and went to Care??
I am asking as Care is on my list to explore and try there array CGH

JB, its always good to find the reason, I would advice you do the immune testing atleast you either deal with it or rule it out
AFM, its very hard as i cant find the reason even though we dealt with immune issues


Hanadi


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## lalaby123 (Sep 21, 2008)

JB yes the list u hav is most of level 1 but not all u can get the complete list from the two links that I mentioned I can't copy and paste links easily on my phone if u had these done a while ago then perhaps u should redo them as the body changes all the time 

Hanadiz I live in Manchester so it was the convenience factor for me Care hav been very good but immune wise they r more conservative than dr g who just gives it all and doesn't take any chances ....re ivig he still likes to use it but alternates with intra unless  u do much better with intra Ive heard from others that argc don't giv ivig early enough ie before EC and Care mainly do intralipid


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## Sprinkles (Nov 6, 2008)

Saffa ~ I believe you can do it in your thigh but preferably in the bum, upper outer quadrant.  Am off to dr at end of week for lessons so I’ll let you know.

Diane ~   mrs, thinking of you xx

Jofie ~ hugs to you too, I think the pain in your ovaries is potentially a good sign and that things are happening.  I get it when stimming and tend to get a good number of follies. Don’t know if there is a test for progesterone reaction cyclogest (pessaries which I thought were the bottom bullets) versus gestone, would be a good idea.  Funny I think that the pessaries let me down and am hoping the gestone will be better for me.  Good luck for Monday scan x

Nixf01 ~      , oh my that’s a funny name for the pessaries, brilliant.  Good plan for the alternating of injection sites, sounds sensible.  I mentioned to my GP about having the blue needles instead of the green and he said the only difference would be that due to the length of the blue ones the timing of the fluid going in would be extended, so better if you can use the green ones.  I’ve still to get some yet though!!!

On the conversation about dairy, I started on more milk this time (organic) and am sure that’s why my lining went up, also agree with the bone/calcium requirement.  I’ve cut out/down on wheat as was told this would make circulation sluggish and to be honest do feel a lot better, but don’t want to cut it out entirely as am convinced that when you cut something out entirely and then go back to it your reaction is worse.  Everything in moderation I think, apart from fish I hate fish!!!

Jellybaby ~ welcome I’m sure Dr Beers book will help it has a section about secondary infertility as well, I think.  And DrG is well worth a visit even if you just had a consultation with him and he answered some of your questions.

Hi to everyone else

AFM well am so glad I went back to Marys, had a great experience with them this time, if that’s possible in all this madness.  Refurbished theatre, new ward specifically for IVF, IVF nurses there rather than nurses you’ve never seen before.  The most wonderful EC doctor who I’ve had before for ET, and amazing anaesthetists to ensure that I don’t remember a thing – I remember nothing, zilch, zero absolutely brill.  And to top it all got 12 eggies  , not sure what quality they will be as was only expecting 6 tops but hey not complaining.  Phone call tomorrow to inform of fertilisation and whether will be a day 2 (Thursday) transfer or day 3 (Friday) which is also a new protocol for them as they were day 2s only.  So all in all a good day.

Only downside is that I’m extremely sore this time, wasn’t so much last time.  Don’t know why but have some pain killers and a DH waiting on me hand and foot.

Off to bed now am shattered x


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## lalaby123 (Sep 21, 2008)

Great news re your EC sprinkle so glad St Mary experience had Bern great after the traumatic start u had enjoy DH waiting on u and feet up now for many days xxx


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## Louiseb26 (May 13, 2009)

Hiya ladies  

Hope you dont mind me popping in.
I been to see Dr Gorgy...what a lovely man he is.
I have had my immune tests done and waiting for my results to come back on the 30th.This is all new to me and I'm hoping that i will get the hang of what all these tests are about.I have brought the book by Alan Beer,which is very intresting...but i must say that I'm finding all this very confursing  

Everyone on here seems to know there stuff...which makes me feel like I'm being a bit of an    

Does anyone know how much the tx will cost...i know it depends on what tx you need.

Thanks Ladies  

Lou xx


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## lalaby123 (Sep 21, 2008)

Ladies on gestone here's som info for u from a good source the lovely Victoria


There is a manufacturing problem for gestone 100mg
but 50mg is available.
I spoke to the pharmacist at Wigmore pharmacy, 
23 wigmore street off wimpole street
Tel:02074910150

She said she is happy to give the girls 50mg x 2, to replace the 100mg, and they have it in stock
(normally she would prefer a prescription for 50mg, but as Dr G is away, she is happy to give 50mg x 2)

No tell them no worries on the gestone level,
but may be a good idea to get precription from Dr G for 50mg x 2 next time instead of 100mg


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## mag108 (Jun 28, 2008)

sprinkles.....so glad st Marys went well and wishing you lots of    . Barry white tonight then!
X


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## berry55 (Sep 4, 2008)

Hi Girls,

I'm new to all of this (immune stuff) and i'm totally confused. I'm thinking about going to see Dr gorgy. I was wondering if any1 could tell me if my GP can do any tests for me (just so  i can save a little bit of cash) If there is any tests i can have done by GP what are they? 

Thanks so much for all your help

Berry xxxx


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## lalaby123 (Sep 21, 2008)

Lou and berry welcome onboard I will write u tomoro xx


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## Cozy (Jul 17, 2008)

lalaby123 said:


> Ladies on gestone here's som info for u from a good source the lovely Victoria
> 
> There is a manufacturing problem for gestone 100mg
> but 50mg is available.
> ...


I got 100mg Gestone from Yasser at Shadwells, two weeks ago with no problems at all. Maybe he still has it

Cozy


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## lalaby123 (Sep 21, 2008)

Lou - welcome to the Dr G club ;-) we've all been where you are standing and yes at first its all a bit of a minefield but before you know it you will be a pro on reproductive immunology  Dr Beer's book is essential reading I keep having to refer back to it.....I hope your test results will shine some light for you as they did for me and the other girls....if only these tests would become standard practice.....In terms of cost of immune treatment, depends what you will need, Ivig is £1350 a pop, Intralipid is £350 a go. If your results show high NKs depending on the level you will need ivig and/or intralipid before egg collection on an ivf cycle and again upon getting a BFP. After that you are monitored and depending on your levels you may have to have them again every month until about 26 weeks to prevent a miscarriage.

Berry 55 - welcome ....yes you can get Level 1 tests done through your GP or at least most of them. The level 1 tests are:
1. Full blood count, liver function tests, Urea and Electrolytes
2. Thyroid function tests (both free T4 and TSH)
3. Immunoglobulin panel (IgG, IgA and IgM)
4. Autoimmune antibodies (must include anti-nuclear antibodies,
thyroid peroxidase and anti-mitochondrial antibodies)
5. Anticardiolipin antibodies (both IgC and IgM)
6. Thrombophilia (must include lupus anticoagualant, Factor V Leiden
and Panthrombin gene mutation)
7. MTHFR 
8. Karyotype for you and DH

Then you can get level 2's done with Dr G which will cost you about £1200 including consultation. If you have Bupa you can claim these back.

Have you read Dr Beer's book Is your Body Baby Friendly? if not it's a must if you are going to go down this route. Also you may find these two links helpful...
http://www.fertilityfriends.co.uk/forum/index.php?topic=82741.0
http://www.fertilityfriends.co.uk/forum/index.php?topic=80433.0

Let us know how u get on and good luck
xxx


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## Saffa77 (Feb 6, 2008)

Ladies

That is us we did our LAD tests and DQ alpha tests yesterday and had to courier them to the Drs Laboratory - they seemed to have been delivered so very relieved.  Do these tests get done there at the lab or do they also go to chicago?  

Sx


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## lalaby123 (Sep 21, 2008)

well done Saffa - Chicago i think


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## Saffa77 (Feb 6, 2008)

oh ok hope those bloods are ok when they get there as have already been in the tube since 4.30pm yesterday afternoon - wonder how long blood can last in the tubes?


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## niccad (Apr 28, 2009)

Saffa - The blood is sent to Chicago for LAD and I wouldn't worry about the fact it's from yesterday. It takes about 10 days to come back I think.

Lou & Berry - welcome to the thread. I've found it invaluable as the girls on here are lovely and are great at answering questions. I've just sent my first bill to Bupa which was for £2000. I had to have some of the type 1 tests done too which is why it's more (as my GB were pretty unhelpful). If you need info on the Bupa thing please PM me as there's a certain way you have to do it.

On the gestone front I managed to get mine from Boots. They had to call around a bit but got there in the end. 
LIT - DrG told me that 2 of the lab guys have left PA & so he is only able to do 2x LIT a month!! Not sure how true this is, but thought I'd mention it in case anyone is thinking of using him in the next few months. 

Diane - how are you going? Thinking of you x

AFM - My 2 frosties are coming out later this afternoon & they said they'd call 'before the end of the day' to let me know how they are. They said that if they carry on growing then we're on for ET tomorrow and I'll get another call in the morning. 2 other scenarios - 1. they lose cells. If they lose more than 50% then they are not viable and there is no transfer.   2. they don't lose cells but don't continue to grow either. If this is the case they usually cancel ET also, although it's up to me  . 
I'm getting really scared and nervous now and can't seem to focus on work. If they do survive I have to rush over to Wimpole street straight after for IVIG at 3pm (DrG said to only do it if they survived). Has anyone else had IVIG on transfer day? My blood reacted better to intralipids so part of me is thinking of asking for this... I'm confused...  
Nic x


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## Sprinkles (Nov 6, 2008)

niccad ~ fingers crossed for your embies defrosting hope they continue to divide, and hope you dont have too long to wait for the phone call.  I react better to intralipids than IVIG allegedly so I've had 2 shots of intralipids this tx, results remain to be seen!  Also thanks for the info on LIT with PA it was something at the back of my mind as my results from greece didnt put me into a positive flowcymetry and he could have been a stop gap if I get a BFP that is.

AFM out of the 12 eggs 6 have fertilised, am scheduled for day 3 transfer on Friday unless things deteriorate and then I'll go into tomorrow instead so hopefully no call tomorrow.  Not as sore today but still chilling and relaxing.

Pinpin, and other ladies who had LIT in greece yesterday hope everything went well x


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## lalaby123 (Sep 21, 2008)

Niccad fingers crossed for your frosties really hope they survive and r fit to go in ask dr g why ivig if u did better with intralipid 

Sprinkles great number of fertilized eggs u should get som lovely 8 cells hopefully good luck for ET xxx


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## niccad (Apr 28, 2009)

Hi lalaby - I already had one lot of intralipids and DrG said that as they were not as tested (i.e. new) he wanted to do one of each. However, my tests were so much better with intralipids... guessing the cost is a worry and I keep having nightmares about anaphylactic shock (only as 2 other doctors at clinics kept saying this to me!!!)... If only doctors realised that they say one word amongst a million & yet you only remember that one word!  

Sprinkles - 6 embies is great. Do your clinic only do day 2 and 3 transfers or will they also try to go to blast? Hope you're enjoying some 'me' time... 


x


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## lalaby123 (Sep 21, 2008)

Yes I think he prefers ivig as more proven don't worry about anaphaluctic shock v v v rare he gives u benadryl I wad worried too at first but had no reaction first time just a little tight chested second time but that could hav been from other things ask him to do it slowly Good Luck xxx


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## deegirl (Jan 17, 2009)

Saffa just wondering which courier company you used?  Did your doc package the tubes for you?  Just curious as if I have an uterine biopsy done here then will have to send it to Dr G.  

Ta x


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## Sprinkles (Nov 6, 2008)

niccad no clinic have traditionally only done day 2 transfers on fresh cycles so having option of day 3 is a bit of a revelation (nhs).

Anyone who's had gestone have you had this on a fresh cycle BEFORE ET?  Consultant just gave me the drug and said take on the day of ET, nothing about before or after and also as dont have any needles/syringes or instructions. Seriously dont think it will be an issue as its intramuscular and nowhere near ET will be so wont interfere with catheter or anything.  Also am I ok not having progesterone support today and tomorrow, anyone else on day 3 transfers when did you start cyclogest/gestone?  Only worried might lose lining if nothing there to support before Friday.


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## Saffa77 (Feb 6, 2008)

Deegirl - Drs Laboratory gave me the tubes and the plastic container to put tubes in and also a padded self addressed envelope so all we did was go to my GP here in Scotland and nurse drew the blood and help me put it in the envelope and I went to the post office (had to be there before 5.15 as that was the last pick up of the day) and told them I needed special delivery by 9am she didnt even ask what it was.... anyways apparently they there safe and sound.  

Ladies I am seriously so confused with this folic acid 5mg.  Dr gorgy told me to take folic acid but he didnt mention 5mg I just asked my GP for 5 because I have heard ladies who are MHTHR hetero need 5mg so I guessed but have heard it needs to be taken with Vitamin b6 and b12 insight ladies?  how are all you MHTHR hetero taking it?  Lalaby thanks for your response on the other thread tho but is that based on folic 5mg?

S


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## Sprinkles (Nov 6, 2008)

Saffa I'm MTHFR hetero and just take the folic acid 5mg


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## niccad (Apr 28, 2009)

Sprinkles - on my last ICSI cycle I was told to start the pessaries the evening of EC - I had a day 3 transfer. For this FET cycle DrG told me to start the gestone the day after I had the LH surge (which in a fresh cycle would be the day of EC). I'm all booked for ET today having had 5 gestone injections so far. It's so annoying when different clinics tell you different things isn't it. 
Just got the call from my clinic saying that both my frosties have developed and are now at morula (?spelling) stage so all good to go. Also booked in for IVIG this afternoon with Dr Eskander. Arkville said that another lady would be there.... anyone on here 

Saffa - sorry can't help on the folic acid question
Lalaby - thanks for your reassurances about the ivig x
Love to all
Nic xx


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## lalaby123 (Sep 21, 2008)

Niccad- wooohooooo that's fantastic news re your embies       good luck with ET and ivig, take nice food and drinks with you while you are having it done and have a wee before hand as not easy going during and wear something warm as ivig makes your arm freezing cold

Saffa sorry can't help with folic acid 5mg as Im just on the normal dose....

Just wondering who else has APS anyone? if so what did Dr G say about this as he didn't tell me anything. And are you on 40mg clexane or 60mg.

thanks
Leila


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## Cozy (Jul 17, 2008)

Lalaby,

your APS is covered by Prednisolone.

For clexane I am on 40mg per day. Unless you have clotting issues or MTHFR then 20 or 40 is the usual dose, depending on your test results and clinic preferences.

Cozy


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## lalaby123 (Sep 21, 2008)

thanks Cozy, I thought APS was a clotting issue so dealt with by both the pred and Clexane?? how are you doing are you booked in for your procedure??


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## Cozy (Jul 17, 2008)

Hi Lalaby,

I have seen a consulant rheumatologist about cardiolioin antibody testing and my result was negative for the IgG antibody but modestly positive for repeat testing of the IgM class. My Lupus anticoagulant was negative. I was told by him and Dr G that Prednisolone is what is required for this.

It was the cardiolipin you were tested for wasnt it?

Yes I am booked in for my next cycle. My hysteroscopy went well. The septum they found during the hydrosonography wasnt bad enough to warrant operating on it and everything else looked good. So its full steam ahead now. I go to Czech Republic on 12th December.... cant wait!

Hope you are continuing to do well. Your scan date is getting closer... how exciting  

Cozy


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## lalaby123 (Sep 21, 2008)

Cozy that's great news re your hysteroscopy     great they didn't have to operate so now you can have full treatment .....would be a great xmas present for you two!!! keeping everything crossed for you in the Czech republic....my scan's tomorrow i think they want to see one or two sacs...too early for heartbeat to show as am 4 weeks 3 days


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## Saffa77 (Feb 6, 2008)

cozy wonderful news!!  I see you also doing a donor egg cycle when were you told to start your meds?  I was told to start prednisolne and clexane on day 5 of estrofem (to thicken my lining) and gestone from day of egg collection.

I was told intralipids about a week before ET is this right?

Sx


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## Cozy (Jul 17, 2008)

Lalaby, hope the scan goes well tomorrow and there are not too many in there   it may be early but its still nice to see, and reassuring.

Saffa, Yes day 5 of oestrogen for prednisolone is what I was told, though I will be starting clexane on day 8. Gestone I will take the day after EC when I have had my lining scan. I will have a pessary the night of EC and start gestone the following morning. 

I will be doing gestone in the mornings and pessary at night.

I'm having IVIg on 7th December and Intralipids on 10th December. My ET date will be 17th or 19th December.

When do you do your cycle?

I have heard of some people having IVIG/Intra on day of EC or ET, from what I have read that is not the best time to have it. The optimum time is believed to be 7-10 days before and some say 7-14 days before is good. Though other people may have been told or read different info.

Cozy


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## Saffa77 (Feb 6, 2008)

cozy - I am having my Donor egg cycle in January (will start with decapeptyl, then 13 days later Oestregen) when I get back from NZ so the 9th of January so ET will probably be mid Feb, still a while yet but just want to get organised as otherwise when I get back from hols its all go!  I have been told to also take cyclogest in the evening but not sure how many pessaries??  how many you on


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## Cozy (Jul 17, 2008)

Saffa,

I will be on 100mg Gestone in the morning and what pain in the   that is, then I will be on 400mg Utrogestan or Cyclogest in the evening.

Cozy


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## Saffa77 (Feb 6, 2008)

I know not looking forward to the gestone either (from what I have heard) and will be doing them myself eeeeeeeeek   Sorry so the 400mg (which is the same for me is that 1 pessary only that you insert.....)  or is the packet 100mg which means you insert 4?

Sx


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## Cozy (Jul 17, 2008)

Saffa,

it depends on what progesterone you have. You can have Utrogestan in 100mg or 200mg tablets which you can take orally or vaginally, but they are more effective vaginally. You would have 4 x 100mg or 2 x 200mg. Or you can have 1 400mg Cyclogest, these can be used rectally or vaginally and a less messy rectally and as they are bigger are easier to use.

So which ever ones you have, you have 400mg as well as your 100mg gestone. Are you going to be doing gestone in your thigh then? Ouch! Can DP not do it for you? Mines an expert at all this injection lark now, he does everyone of mine.

Cozy


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## berry55 (Sep 4, 2008)

Hi girls,

I just wanted to say thankyou  for all the advice about the tests i have to get done. My Gp is gonna do all the level 1 tests fo me next week... .so really glad about that. 

xxxxxxx


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## lalaby123 (Sep 21, 2008)

Welldone berry glad your Gp was cooperative som of the results take quite long to com back r u going to see dr g soon??


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## Saffa77 (Feb 6, 2008)

awesome news Berry!

Cozy - yeah I have urogeston left over from my last cycle but dont think I have enough and they 100mg so would need 4 of those.  but will try get the cyclogest 1 x 400mg does definately sound easier.  MMM no I was going to do gestone myself on the   - I will let to learn to do them myself because I will be in Portugal for 1 week in which he will only be few days so will need to learn.  Do you think i can manage on my   myself?  I remember when I was in hospital recently they would give me an injection daily and they said it was to thin blood and that was done in the thigh it did sting but was bearable.... do you think it would be the same?


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## berry55 (Sep 4, 2008)

lalaby- the gp told me thoe blood results wiul take about 3 weeks to come back. So i have to go see her on the 15th of dec for them.  I have not made any appointments with Dr G yet as i have no clue what 2 do.... should i wait for the level 1 tests 2 come bk b4 i do anything? so that i can show him these results too? or does it not make a diff?? xxxxx


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## lalaby123 (Sep 21, 2008)

Yes if u r not in a hurry then that would be best thing otherwise u can see him and do level 2 s while u wait for both sets of results and then hav follow up consult to discuss all results and plan forward


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## Cozy (Jul 17, 2008)

Berry,  TBH Dr Gorgy doesnt appear to take much notice of level 1 tests, the Chicago tests and the other ones he does are the ones he is most concerned about, so you could either book an appt for when you have your results back or book one for whenever you wanted, but Lalaby suggested sounds good, get Dr G's tests done and then you have all the results for your consultation with him.

Saffa, I have never done any injections in my thighs so I dont know anything about it, but the injection to thin the blood is normally done subcuteanously and the gestone is intramuscular, so they are quite different. I know people who do the gestone themselves but not sure where or how they do it, I'm sure someone could advise you. You could always get DP to do it for you when he is there and get a nurse at the clinic to do it for you when he is not. I dont know of anyone who has been to Portugal for DEIVF, are they a good clinic? How did you find out about them?

Cozy


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## Sprinkles (Nov 6, 2008)

Hi girlies

Cozy great news on not needing an op for septum and your DE cycle can go ahead.  Good luck.

Niccad great news on your embies, good luck for ET.


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## berry55 (Sep 4, 2008)

Tanks for the advice girls.... i will need to talk 2 dh... but i think i will go with what you all say as i know u all know ur stuff... ohhh where would i be without FF!!!!  xxxxxx


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## Cozy (Jul 17, 2008)

Thanks Sprinkles,

where are you up too? EC was Tuesday, so is ET tomorrow? Have you had updates on your embies this morning? I hope they are growing big and strong  

I'm glad to hear St Marys is looking better after its refit. I was chatting to one of the Dr's from there the other day and telling him what a bad reputation St Marys has and how their treatment is not good, and also how a few people I know have actually written letters of complaint to the hosp and PCT. He said he knew there were problems and they were trying to rectify things. 

Cozy


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## bluprimrose (Sep 1, 2009)

hello lovely ladies!

sorry i've been quiet over the past few days.  i went to see a consultant who is my fertility mentor in a way and left as usual after seeing him feeling much calmer with a much clearer head after having so many decisions to make recently.  so i didn't want to confuse myself again by reading too much or asking too many questions - one of my favourite past-times!!  which normally results in a fuzzy head!

i do however have a little question which i'd be grateful if someone had the chance to answer.  i'm on 5mg folic acid and have read on this thread that because of that i should be taking b6 & b12.  is that in addition to what's in my multi-vitamin and what strength should i be taking?  online i have found mg of b6 and mg of b12.  i stop all my vitamins after egg collection - except folic acid.

sorry for lack of personals but am sending love and hugs to you all.  

bpxx
p.s. can't remember - did i tell you i don't need ivig/intralipids?  yipeeeee!


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## Cozy (Jul 17, 2008)

BP, 

are you on 5mg folic acid because of your MTHFR results or some other reason? 

Cozy


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## Saffa77 (Feb 6, 2008)

BP - thats the same question i have asked on here today.  Ive been told you take 5mg folic acid and Vit B12 and B6 but no one has told me which dose.  Is it ok to take folic acid and pregnacare is that sufficient.  But how does it work if you take your 5mg folic acid and a multivitamin or like my pregnacare for eg they too have folic acid in 400ug in will that not be one overdosing on folic acid?? LOL

PS you so lucky about not having to have intralipid/IVIg!!!!  


Sx


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## Cozy (Jul 17, 2008)

Saffa,

I replied to your question regarding folic acid on another thread you posted on.

What is your reason for taking 5mg folic acid, is it for your MTHFR result or something else?

Cozy


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## Saffa77 (Feb 6, 2008)

Hi Cozy

LOL - sorry I lost that thread for some strange reason - thanks for your reply though just wasnt sure on how much to take Vit B6 and B12.  Yes im positive for Hetero MHTFR.

Sonia


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## Cozy (Jul 17, 2008)

Saffa,

I am not MTHFR hetro/**** positive, but I do take 5mg FA for other reasons. 

This is some info I found on MTHFR Hetrozygous.

Almost half of the population is "MTHFR hetero" - it is nothing abnormal. The heterozygous MTHFR mutation (= 1 "abnormal" gene) does not lead to increased homocysteine levels. It is the homozygous MTHFR mutation (2 "abnormal" genes) that is associated with higher homocysteine levels. 

However, it is the fasting homocysteine level that counts, independent of whether the patient has the MTHFR mutation or not. If an individual's fasting homocysteine level is normal, there is no need for vitamin B or folate therapy - even if the patient has the homozygous MTHFR mutation. 

MTHFR stands for Methylene-Tetra-Hydro-Folate-Reductase. MTHFR is an enzyme, which we all have in the cells of our body. It is needed to metabolize and get rid of homocysteine. High homocysteine levels are a risk factor for blood clots in the veins (DVT, PE) or arteries (heart attack, stroke, arteriosclerosis). 

Some people have a variant of this enzyme, which is called "thermolabile MTHFR" or C677T MTHFR. It is due to a single mutation of the MTHFR gene. This variant does not metabolize homocysteine as well as the normal MTHFR enzyme, and blood homocysteine levels in individuals with this variant enzyme may, therefore, be slightly higher than in individuals with the normal enzyme.

The MTHFR mutation is extremely common:

•44 of the population have the normal enzyme 
•44 % are heterozygous for the mutation (i.e. have 1 variant gene). These individuals have some normal enzyme and some of the thermolabile variant of the enzyme. 
•12 % are homozygous for the mutation (i.e. have 2 variant genes). All of these individuals' enzyme is the thermolabile variant. 

Presence of the homozygous thermolabile MTHFR mutation is only one of various reasons why homocysteine levels can be elevated. Other reasons are vitamin B and folate deficiency and renal failure. Often we do not know why levels are elevated. Some studies reported that the homozygous thermolabile MTHFR mutation is associated with arterial clots. However, an overview of all studies concluded that this is NOT so (ref 1). Earlier studies on the association of the homozygous MTHFR mutation and venous blood clots (DVT, PE) have been inconsistent: some studies found a slight association, others none at all. A recent large analysis of all studies published showed that, in the U.S., the MTHFR mutation is NOT a risk factor for venous clots (ref 2). Finally, a recent analysis of all published studies on pregnancy complications and MTHFR mutation also showed, that the mutation is NOT a risk factor for pregnancy complications (ref. 3).

A normal homocysteine level is often defined as one being less than 13.0 micromol/L. The higher the level, the higher the risk for clots. Levels can be lowered by taking a multiple vitamin with a high content of folic acid (for example 400 mcg = 0.4 mg), vitamin B6 (= pyridoxine; for example 25 mg) and B12 (= cobalamin; for example 1 mg). Often folate treatment alone (dose: 0.4-5 mg per day) lowers homocysteine levels into the normal range. However, several publications in the last several years have consistently shown that lowering homocysteine levels does NOT change the risk for future blood clots. Thus, there is at present no good reason to treat an individual with elevated homocysteine levels with vitamin B6, vitamin B12, or folic acid , at least not a person with only slightly or moderately elevated levels (say, levels below 30 micromol/L). Whether individuals with more significantly elevated homocysteine levels may benefit form lowering of homocysteine levels is not know. Therefore, I have the tendency to recommend treatment to these individual with a combination pill of vitamin B6, vitamin B12, or folic acid (for choices, see table).

Foltx®  2.5 mg  25 mg  1000 mcg  
Folbee* 2.5 mg  25 mg  1000 mcg  
Folgard® Rx 2.2 2.5 mg  25 mg  500 mcg  

Approximately 2 months after starting vitamins a homocysteine level should be checked again to make sure it has decreased into the normal range. 
See also Q/A 77 “Homocysteine”.

Dr. Moll, Director of the Thrombophilia Program at the Carolina Cardiovascular Biology Center, Department of Medicine, Division of Hematology-Oncology, UNC Chapel Hill (North Carolina, USA).


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## Cozy (Jul 17, 2008)

Saffa,

if you did want to take something similar to Folgard which you cannot buy in this country

This is what I also read about MTHFR. Will probably make more sense to you than me. 


If you have one MTHFR mutation (these quantities are what's in one Rx Folgard):

Folic Acid: 2.2 mg
B6: 25 mg
B12: 1mg

If you have 2 mutations: (Take 2 RX Folgards)

Folic Acid: 4.4 mg
B6: 50 mg
B12: 2 mg

So even though we cannot by Folgard RX in this country there are similar products or you can take the supplements individually.

I have read different variations on the above and it is probably best to get medical advise as to what to take and in what quantities. I am not recommending you take the above tablets but its a starting point for any research you want to do.

If you take a good quality multi vit and eat a good balanced diet rich in fruit and veg you will probably get alot of your B vits naturally. Eat cornflakes - they contain folic acid and Vit B6 and 12

Cozy


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## bluprimrose (Sep 1, 2009)

hi cozy, yes, i am taking 5mg of folic acid because of my MTHFR results which i tested positive for - and i am homozygous - i have the mutant gene from both parents (great!).

i take a multivitamin with iron every day.  online i have found b6 in a 50mg dose and b12 in 100ug.  both say don't take if pregnant.

bpxx


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## Cozy (Jul 17, 2008)

Hi BP,

I dont know if you have read this already, but I copied it for my info just incase my test results came back positive.They didnt but I kept it anyway. It might be of some interest to you .

I Have just found out I'm homozygous for MTHFR C677T and have come across this post from another site which I found very helpful. It's an American site, so the references are for US drugs, but the basic information is the same.

In a nutshell, MTHFR mutations interfere with the body's ability to absorb folic acid. Folic acid deficiencies for babies can cause neural tube defects like spina bifeda. So it's very, very good that you learned about this and can now give your future babies the right amount of folic acid in utero. In addition, lack of folic acid can cause clotting-related problems. Since the teeniest, tiniest blood vessels are in the uterus, you can have microscopic clots that don't harm you, but cut off the blood supply to the embryo/fetus. This can cause implantation problems, m/c, or even stillbirth. So properly treating your MTHFR is critical.

MTHFR is one of several different kinds of inherited thrombophilia. (Antiphospholipid Syndrome is acquired thrombophilia.) Please be sure to have your parents and siblings tested for MTHFR mutations as well. If positive (both of mine were: one with the C mutation, the other with the A), then they should take baby aspirin and Folgard as well (one Folgard per mutation.) Your future baby/ies will be fine; just be sure to give him/her/them a children's multivitamin and later extra folic acid, too.

There is controversy as to the importance of homocysteine levels when it comes to MTHFR mutations. Some doctors say:

MTHFR causes folic acid deficiency, which causes elevated homocysteine levels, which causes clotting problems, which causes IF or m/c troubles.

Other doctors say:

MTHFR causes folic acid deficiency, which causes clotting problems, which causes IF or m/c troubles, which may or may not cause elevated homocysteine levels.

My own doctor does not concern himself with homocysteine levels; he prescribes Lovenox for MTHFR mutations regardless. He is in the camp that says that homocysteine levels (particularly pre-pg) are not an accurate predictor of clotting troubles.

Baby aspirin is a blood thinner (relatively mild). Lovenox (low molecular weight heparin) is an anti-coagulant (slows clotting.) They have two very different functions in the body. Your doctor may or may not want you to use both. Many, many women on this board have used both, and many have had success that way.

The order severity from worst to least is:
1. C677T & C677T (two copies)
2. C677T & A1298C (compound hetero)
3. A1298C & A1298C (two copies) OR C677T (one copy)
4. A1298C (one copy)

MTHFR prevents you from metabolizing folic acid, so you supplement it with prescription strength folic acid and B vitamins B6 and B12. Common prescription names are Folgard, Foltx, Folbee, and Metanx. Metanx is supposedly better for those with MTHFR as it contains folate that's already been metabolized for easier absorption.

Risks involved with MTHFR are miscarriage, placental abruption, downs syndrome, trisomy, and spina bifida, as well as heart attack, altzheimers, deep vein thrombosis, stroke... the supplementation of folic acid and a baby aspirin everyday for the rest of your life may prevent these risks.

How much folic acid? My geneticist and this board say 1 pill (2.5mg) per mutation. I'm compound hetero for C and A, so I take two a day on top of a pre-natal.

What about your parents? If you have two copies, you got one from each of them. If you have one copy, you got it from one parent. Getting your parents tested and on a folic acid/baby aspirin regimen may help prevent the risks mentioned above. Heart attacks and alzheimers run in my family - I'm glad I had my parents checked!

Words of comfort? My Dr. (Dr Toth) says that "many,many,many women have children without any problems with MTHFR" and don't let it worry you. It's not scary at all - just make sure you get the folic acid that your body needs everyday for good vascular formation.

Cozy


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## Sprinkles (Nov 6, 2008)

BP great news on not needing IVIG or intralipids definately a positive on your purse!  

Cozy was told that ideally they would want to do ET on Friday, Day 3, however obviously if things deteriorated and majority were losing cells then they would call me this morning and get me in for Day 2 transfer.  Not had a call so no news is good news I hope, so am geared up for tomorrow and praying for an 8 cell, never had an 8 cell before only 7 on an FET.

You're right Marys does get a bad rap and I've had my fair share of misinformation and messing about from them, especially on this last tx where I didnt know from one day to the next where I was going to be treated.  However in their defense the nurses are driven to distraction as I dont think they are kept informed of what goes on and are kept in the dark and try to cope as best they can as there are always loads of couples there, so very busy.  I dont know whether I've hit on a good time as they're only just taking patients back after being closed but this time has been a revelation, a totally different experience especially with the new ward, building, and some new protocols which does mean they are trying to improve.  The only two criticisms really would be that if a tx fails there doesnt really seem to be any investigations on to why not, or proposals to try and change things for future txs, and also the fact that once you see your consultant at initial meeting you never see them again which I think is poor.  But as I say 10 out of 10............ so far!!


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## bluprimrose (Sep 1, 2009)

as always, thank you cozy.

am not sure how much of the b's to take but will look into it.

bpxx


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## deegirl (Jan 17, 2009)

Saffa and Blueprimrose regarding your question on folic acid and vit B, to be honest I would run it past Dr G.  I can only say what my clinic perscribed me - 5mg of folic acid and a vitamin B supplement (the chemist seemed to know what that meant).  It didn't even cross my mind to check dosage.  As I was/am taking Pregnacare I also asked the clinic the same question as you Saffa (will I be overdosing on folic acid!), the nurse said no because there is only 400 micrograms in Pregnacare which is such a small amount.  Hope this helps a little!!  

Dee


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## deegirl (Jan 17, 2009)

Girls just a quick question, which clinic does Dr G use for ec and et - is it London Women's Clinic??  

Thanks!


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## deegirl (Jan 17, 2009)

Sorry just found that niccad had answered my question pages back, thanks hun!


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## Toffee Girl (Mar 20, 2009)

URGENT

Can anyone please give me Dr Eskander's mobile number?  I need to call him (now!) to find out what dose I should be injecting and I have lost his number.  The main phone number goes through to an 02 mobile number but I don't know if that is his - have left a message.

If anyone can help me that would be great!


Toffee Girl x


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## Toffee Girl (Mar 20, 2009)

All sorted - got the number so no worries!

Toffee Girl x


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## Bettysjourney (Jun 11, 2007)

Hello ladies

I got my faxed results back from Dr G office today - just wondered if anyone could possibly interpret the results, I'm going back for back up consultation next week but wanted to know if anyone could give me any advice in advance:-

DQ Alpha Genotype:-

Me 0101 0101
Partner 0101 0301

NK Assay w/Intralipid  50:1 1.5 mg/ml            12.8
            W/Intralipid  25:1 1.5mg/ml            7.4

NK Assay (%killed) Panel

50:1


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## Bettysjourney (Jun 11, 2007)

Sorry posted too quickly:-

25:1                                            7.3
12.5:1                                          1.0
IgG conc 12.5 50:1                              3.1
IgC conc 12.5 25.1                              3.0
IgC conc 6.25 50.1                              3.9
IgC conc 6.25 25.1                              1.7

%CD3                                                88.3
%CD19                                              2.4
%CD56                                              6.0
% of CD19+ cells CD5+                        4.2

LAD

Flowcytometry                                    NEGATIVE
t CELLS 1Gm+                                      3.3
T CELLS 1gm+                                      6.7
B-cells 1gM+                                        17.3
B-cells 1gG+                                        27.0

NK Assay x/Intralipid

50:1 w/Intralipid 1.5mg/ml                          12.8
25:1 w/Intralipid 1.5mg/ml                          7.4


I would be so grateful if someone could shed some light on these.

Many thanks
Betty xxx


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## Sprinkles (Nov 6, 2008)

Hi Linnie

Looks like your results arent too bad.  Your NK cells dont seem elevated and only your CD3s look high which can be dealt with with steriods.  The only thing would be your LAD result which is negative and ideally you would like to get into a positive via LIT however seems like you have at least one match with your DH so probably best donor LIT.

Maybe the other ladies can add if I've missed anything.

Hope that helps.


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## Louiseb26 (May 13, 2009)

Hiya lovely ladies

Thank you so much for the welcome.
I'm trying to get my head round if i need tx on how much it might cost   Ive been   and getting myself in a bit of a state over the last couple of days...waiting for these tests to come back...i know I'm going to need the works  

I hope i get to understand all about these tests...as all you ladies really  know your stuff.

Lou xx


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## lalaby123 (Sep 21, 2008)

Linnie your nks r fine although u haven't posted your 50:1 level but going by the others ok guessing it's low so u r lucky and one of the few so most likely no ivig or intralipid needed for u except u haven't posted your tnf alpha results if the first ratio is over 30 u may need humira and ivig otherwise maybe just LIT ... Hav u had any level 1 tests done eg thrombophilia etc

Louise cost of an immune cycle treatment will vary from person to person it can be anything from a few hundred if u just need simple drugs like steroids and blood thinners to several thousand if u need ivig and get pregnant and need it during pregnancy it's like opening a can of worms it's best not to know till!!! I for example hav had 1 ivig and 1 intralipid before EC that's 1700 then wen I got bfp I had one more ivig 1350 and hav to hav intralipid after heartbeat scan 350 then retest bloods 350 then depending on level maybe more ivig or I am praying intralipid ...som ladies hav to hav it till late pregnancy but if it's that or miscarrying then we all rather pay up ofcourse .... Hav u seen dr g yet?


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## Louiseb26 (May 13, 2009)

Thanks so much for the info Lalaby123.I go back to see Dr G on the 30th. I know i should just wait and see what the tests say and then go from there.Just been getting myself in a bit of a state... I'm so scared.
How long was it before you got the hang of all these tests? I'm reading the book by Alan Beer,but i just cant seem to get the hang of whats going on   

Sorry to sound like I'm going on a bit.

Lou xx


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## Cozy (Jul 17, 2008)

Shelly,

I was told by Dr G to have my 1st Humira before my 1st LIT, but when I asked Dr Tsagaris he told me to have my 1st Humira 1 week after my 1st LIT and then my 2nd Humira 2 weeks after that. So I followed his protocol and did that.

If you were to follow his protocol, then you would have your 1st Humira on 24th November, 2nd Humira 8th December an 2nd LIT on 15th December.

Dr G shouldnt charge you a consultation fee to pick up blood forms. You could phone the clinic and tell them what day you are going for the retest so they have the forms ready for you.

Cozy


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## lalaby123 (Sep 21, 2008)

Shelley u will be a pro in no time it's really daunting at first but once u get past the test stage it's all pretty simple stuff really and nothing to worry about other than the cost!!! But if u hav any issues u wud b wasting money on ivf anyway so better u know


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## lalaby123 (Sep 21, 2008)

Sorry that last MSG was for Louise !!


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## Louiseb26 (May 13, 2009)

Lalaby your so right,and thanks again   A big con grats on the BFP   Good luck lovely.

Shelly - thanks lovely.Your right about the ladies knowing there stuff...what would we do without them.Good luck with your tx  

I'm sure i will be back with more questions  

Lou xx


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## Cozy (Jul 17, 2008)

Shelly,

not sure about the TH1/2 test as I dont have to do that, someone will be able to advise you on that.

The LAD retest is usually 3-4 weeks after your 2nd LIT. Your DH will also have to go with your for the LAD retest

Cozy


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## mag108 (Jun 28, 2008)

...just quick hello from me.

Diane how are you doing?X


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## Jellybaby (Aug 10, 2007)

Sorry, posting another question again !  I have decided that I am going to get tested for immune issues and am just wondering how it would work if I needed immune tx?  Say for example I saw Mr Gorgy and he says I needed ivig or intralipids - would I need to keep travelling back and for London for this?  What about blood tests to check what effect the drugs were having on my levels - do these need to be done in London too?  I cannot book time off from my job as I am a teacher  so this isn't an option and the thought of going back and for london with a toddler fills me with dread .
How did you find it?
Thanks,
JB. x
p.s - I live in the west country.


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## bluprimrose (Sep 1, 2009)

hello ladies  

hope that you're all well and sending     for those who need them.

as usual i have a question...  sorry!  i thought i'd asked every question going but i've managed to find a new one!

as some of you know, mr gorgy has recommended i take 40mg of clexane from day 5 of stims and then 60mg of clexane from day after egg collection.  i just wondered if you could tell me please if you know, which of my blood test results would have meant that i need clexane and why?  thank you so much.  i had the nk assay test and the th ones along with mthfr, factor v and some others which i can tell you the names of if you need.

another consultant has advised me strongly against taking such a high dose of clexane and has said i should stick to the 20mg i have taken before.  so i'd like to know firstly why i'm taking it and why such a high dose.  i get really really terrible bruising on 20mg and i've been told the risks would outweigh the benefits of taking higher than 20mg.

i know i have discussed the 40/60mg clexane before but i was wondering what your views are on it too.  i thought my mind was all made up but now i'm confused again.

good luck to everyone else having treatment at the moment.       &          

thank you so much     

bpxx


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## Han72 (Feb 15, 2007)

Hi all

just crashing in and out to say to BP my French doc had me on 40mg clex, now increased to 60. It is supposed to prevent blood clots. He's checking my blood count every 5 days, if it drops to below 100K/mm3 (norms being between 150K and 450K) I'm to stop taking it.  I've been on it since stimms (with a break of a few days before ec) and am now nearing the end of the 2ww. my blood count today was 217K so I'm safe to continue taking it for the time being.  

Why don't you ask Gorgy to explain why he's giving you such a high dose and ask how he intends to monitor you if you're not convinced? In the meantime, perhaps you could research clexane on the net and see what you can find out....?  Also please bear in mind that your consultant would probably tell you not to touch LIT, Humira, Intralipids or IVIG, all things recommended by Gorgy and/or the ARGC / other immune tx specialists....  Not all doctors are going to agree on everything unfortunately and it makes it even more difficult for us to decide which way to go but, ultimately, only you can decide who you're willing to trust...

Good luck hon     

xxx


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## bluprimrose (Sep 1, 2009)

thank you so much nixf01.

it's so hard, i just don't know what to do.

i will try to ask dr g but am sure he's going to be swamped as he's been away for a week.  i thought i'd made the decision that i'm going to stick to 20mg - but now i just don't know.  aaaarrrggghhhh!  

have you had bruising from the clexane?  mine are so bad even on 20mg.

loads of luck to you too.

bpxx


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## lalaby123 (Sep 21, 2008)

Jelly it depends if u need ivig/intralipid  or not most people do and if so on an ivf cycle u will hav to go once or twice before EC and then once upon BFP and then another upon heartbeat then two weeks later u do a blood test (can be done by post) and then depending on results u may or may not need more ivig/intralipid ........theoretically u can get a prescription from dr g and then hav them done at home by healthcare at home who r brilliant however it means dr g won't earn anything so he may not like to do it but if it's impossible for u to trAvel I'm sure it can be arranged ... Hope this helps  

BP sorry can't help re clexane u need to ask dr g he must hav a reason for putting u on higher dose 

Afm I had scan and saw one gestational sac so not twins!! Was a bit dissappinted as would hav been good to hav two just in case one withers in a couple of weeks but I guess I am delighted at least one is there... Still too early for heartbeat so another scan next Friday 

Love to all xxx


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## Han72 (Feb 15, 2007)

Hi Lala - congrats on having one healthy bean in there! Sorry you were disappointed at it not being twins but it must have been incredible to see that sac there! When is your next scan hon?

BP - Frankly I think it would be unusual NOT to have bruising with clexane, regardless of how careful you are with injecting it, unfortunately   I am black and don't bruise easily but I still have the tell tale marks.

Now, I have a question - I'm taking my 60mg Clex, + 40mg Preg, gestone and cyclogest and am 11dp 3dt. I was woken up this morning by excruuuciating pain in my knees + more pain in my hips. I mean it literally woke me up it was so painful. Has anyone else on here had this? I have a fancy schmancy mattress and usually sleep on my back or side with my head and legs raised. However this morning it feels like I slept on my stomach with someone trying to bend my knees back the other way to make my legs lie flat on the mattress!  So... I may have slept in an awkward position and that's what's causing this but I just wanted to ask if anybody else has experienced this or anything similar?

Many thanks!

Nix
xxx


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## lalaby123 (Sep 21, 2008)

Nix sorry you're in pain I've not experienced anything like that it does sound strange r u taking 500mg calcium being on such high dose of clexane and steroids??


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## bankie (Dec 27, 2007)

Good morning ladies,

Sorry I've been AWOL for a while, but I've had a manic week at work!  The good news is that AF arrived yesterday, bang on time, so I'm starting on my clomid today then off to the Lister for a scan on Monday before starting on the menopur - yipeee!!  It's been 9 months since my last tx, so it's good to get started again.  Having said that, I've barely slept for the past two nights as I'm already so nervous about it all. Anyway, a few personals:

BP - I have also been prescribed 40mg clexane pre EC, 60mg afterwards.  He told me that this is because I am homozygous MTHFR (which I think you are too?).  Being homozygous, we have a greater tendency towards blood clotting, hence the need for the higher dose.  I haven't taken clexane before though, so I can't really help on your bruising question though.

Lalaby - how lovely it must have been to see a gestational sac at your scan.  I understand you being disappointed at only seeing one, as I also dream of having twins so that I can have my ideal 2 kids in one go and never have to deal with any of this IF nightmare again EVER!!  Having said that, it's great that you have a healthy pregnancy which is progressing smoothly, so congratulations!

Nix - I see that OTD is just around the corner for you hun, so wanted to send you tonnes and tonnes of luck for Monday.  I wish I didn't need to send you luck though, because god knows if it was down to sheer effort rather than luck, then we'd all have about 20 kids by now! 

Diane - how are you doing hun? Thinking of you.  

bankie   

 to Louise, Jellybaby, mag, shelley, cozy, linnie,toffee girl and a special   to Sprinkles!


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## Saffa77 (Feb 6, 2008)

ladies 

Lalaby - well done on seeing the one beanie !

Nix01 - re:  clexane I see you  mention you get your blood tested every 5 days - May I ask why sorry its just that I have read that with clexane you need to have a blood count to check levels arent too low or high etc.  I too will be on clexane 60mg and aspiring 75mg.  I live in Scotland and just feel that with such a high dose of clexane and not being monitored at all worries me!! I believe not all the ladies on here get tested with being on clexane  but it really worries me that I am taking something and not knowing what its actually doing to me.  Should I ask Dr Gorgy if I need to have retests??

Sx


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## Saffa77 (Feb 6, 2008)

PS ladies was just looking at my results again:  I have tested positive for:

Factor  V (Leiden)  Factor V G1691A mutation:  Positive (Hetero)
MTHFR - gene mutation - positive Hetero for the MHTHR C677T mutation

and I will be on clexan 60mg.  He did mention 40mg before then 60mg after but just had a look on script and it says 60mg..... aaargh all this so confusing just wish Dr G would explain things better like I have said before we pay an absolute fortune and dont get explanations that are good enough,  It is different medicine and a lot we are taking so anything could go wrong!  It is just causing unecessary stress!! 

Anyways just found out I can get Intralipids from healthcare at home for £285 which includes the nurses's time too,  and at Dr G's is £350!!! eeeeeek 

Sorry just another rant but I myself need full on explanations, will mention this to Dr G next time I speak to him for my LAD results and seeing as that will be another £90 I will ask all my concerns and issues and dosages and when etc etc - will have a huge list of questions.

I have emailed him - have any of you ladies had a response to an email sent to him
Also to any ladies who had their Bupa or AXA pay this did you have to phone the insurance to find out how much they paid Dr G or did you just receive a cheque in the post from Dr G?  

Sx

Sx


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## bankie (Dec 27, 2007)

Hi Saffa,

I find that getting email responses from Dr G is a bit hit and miss.  I've emailed him a couple of times and got replies straight back.  One other time I had to call his secretary and get her to ask him to respond to my email.  The last email I sent to him about a week before he went away and I never got a response to that.   

Good luck!


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## deegirl (Jan 17, 2009)

Saffa

I have bupa and the way I am doing this is - I paid Dr G upfront and then his accountant will provide me with an invoice and I'll claim it back from Bupa.

D


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## deegirl (Jan 17, 2009)

Hi Girls
I've just noticed that Dr G charged me £250 for an hour long consultation.  

It says on his website £150  

Have I been overcharged?  What have the rest of you been charged?

D


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## Diane72 (Oct 29, 2007)

Hello All,

Sorry I've been a bit quiet lately. Just coping with everything and my 5th loss and taking time to move on mentally to the next pathway. We have now registered with '******************' and had our initial consultation. I had to provide a profile etc. and now its a case of waiting until we find a surrogate match. I feel this is the right decision for us now as we have had some form of immune treatment for the last 4 rounds, progressively more intensive but it hasn't made any difference. 

Nonetheless, we still need to rule out quality issues with the sperm and egg prior to transfer into a surrogate. I was hoping to get my DH's sperm aneploidy and DNA Fragmentation tests done with Mr. Gorgy. I know he does the tests, has anyone done them with him? Do you know does DH have to give his sample at Mr. Gorgy's clinic or in TDL or does he take a sample at home and then bring it in? If anyone has done it, it would be really helpful to know.

Saffa, I do find Mr. Gorgy responds better to phone calls than e-mails. Based on your results seems clexane is what you need. AXA refused to pay for anything for me.

Bankie, wonderful news on getting started again. Good luck!!!   thanks for the  

Sprinkles, hope the 2WW isn't getting to you   sending  

Lalaby, one healthy sac is more than many can achieve so early on so I'm over the moon for you, sending you lots of luck and hoping a  nice heartbeat appears in the next few weeks

Nix, if you are in so much pain I would phone and check with the clinic. Sending you   for your OTD

BP, as others have said bruising is the 'norm' (my Mum said I looked like I'd been in a car crash!). Just to reassure you many clinics give 40mg clexane to people who haven't even tested for clotting issues (e.g. ARGC)

Jellybaby, I believe you can get the bloods taken locally and then just post them to Mr. Gorgy/TDL for sending away for analysis.

Mag, thanks for thinking of me   I'm OK just trying to figure out all the right steps for surrogacy and ruling out other potential issues. I have decided 2010 is our final year for fertility treatment/surrogacy/DE/DSperm and then we must move to adoption as some places have an issue with you adopting a baby/toddler and if you are over 40 and the process is likely to take a couple of years and we are already 37.

Hugs to everyone else, sending you all lots of fairydust!!     

Diane x


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## Trueblood (Aug 31, 2009)

Diane

Sample given at TDL in a room downstairs.  Results take 2 weeks for DNA Fragmenation and 3 weeks for the aneploidy.


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## Sprinkles (Nov 6, 2008)

Diane I know I've said it before but really admire your courage and strength mrs    Sorry cant help with any of the tests you mention but wish you the best of luck with them.  The SP sounds positive and   they find you a match soon x

Bankie great news on getting started girl, this is the one      

deegirl I'm sure my first consultation was about £150 but that was a while ago, best to double check with him it could be just a mistake.

saffy I've sent a couple of emails to DrG and never had a response, phone is always best.  HAH definately is cheaper if you have through the week but I've always had mine at weekends which makes it more expensive!

Nixf01 sorry cant help with the question sounds like it was very unpleasant hope the pain has eased now   and good luck for Monday x

lalaby great news on scan

Pinpin how you doing hun?  

Sorry if I've missed off anyone there are so many of us and my head is 2ww mush, but hello and hope you are all well xxx


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## lalaby123 (Sep 21, 2008)

Dee if u r claiming from bupa he charges 250 but if not it should be 150 

Diane well gone for having a plan of action and it sounds like a good one sorry can't help with the tests but I wish you a miracle BFP or a good surrogate to home your future baby        

Sprinkles   and         on your wait 

Nix good luck with OTD      hope things hav settled down 

Bankie good luck for this cycle hope it's the one for u xxx

pinpin how r u? Hav u had a scan yet? 

Saffa as others hav said emails r hit n miss if u resend it with a reminder u might get a reply 

Hi to others I've missed out xxx


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## Diane72 (Oct 29, 2007)

Thanks for the info. Trueblood !

Diane


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## Mandchris (Oct 25, 2007)

Hey all, 

I hope you dont mind me posting this but just wanted some advise and was pointed in the direction of your forum, so any info would be very helpful. I got my immune blood results and am googling like mad to see what they mean, (as Dr Gorgy is in Egypt)!  I have been goin through the Dr Beer book too, its all very confusing, but the reports show highlighted areas which on investigating seem to show where the problems are.  

Leukocyte Antibody detection

(T-cells) IgG+                                5.4%
(B-cells) IgG+                                18.2%


TH1:TH2 intracellular cytokine ratios                                        LIMITS

TNF-a.IL-10 (CD3+CD4+)                34.7              RATIO    13.2  - 30.6

DQ ALPHA GENOTYPE
ME 0201 0501
CHRIS 0201 0303

NK ASSAY (% KILLED) PANEL

%CD56                                        23.6%                                    LIMITS 2  - 12
%CD19+CELLS CD5+                      17.6%                                    LIMITS 5 - 10

There is more on the report but its very complicated to read so I have focussed on the highlighted stuff, Im getting the impression I will need something for natural killer cells for sure, knowing my luck I reckon I will need the works!  Any input from those in the know would be appreciated! 

Mandy xxxxxxxxxxxx


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## bluprimrose (Sep 1, 2009)

hello everyone

just wanted to say hello as i'm actually on a computer now and not my phone so i can send things like this    !

mandchris - i am sorry not to be able to help - but there are some amazing ladies here who i am sure will be able to interpret your results.

diane - hope things are getting a little easier for you - you are a very strong lady to have been what you've been through and still have the courage to fight - a shining example to those of us on a difficult journey ttc.  .

sprinkles, nix and bankie - good luck      .

lalaby what lovely scan news  .  looking forward to hearing even better news at the next one.  

hello to deegirl, saffa, pinpin, trueblood, mag, jellybaby and everyone else - hope you're all doing ok.  .

bpxx


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## lalaby123 (Sep 21, 2008)

Hi mandy and welcome 

These results show u hav:

raised tnf-alpha needs to be below 30 before you try to conceive u will be prescribed humira for this 

raised nk cells u will need ivig and/ or intralipid u haven't posted the results that show which works better for u u also haven't posted what your overall nk activity is at 50:1 

Your negative LAD and low results mean u will be advised LIT and most likely donor as u hav a match 

So the full works basically which hopefully will tackle all your issues and help you get your BFP 

Because u need LIT and humira u will hav to wait for your levels to normalize before cycling again

good luck and let me know if u hav any questions xxx


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## Mandchris (Oct 25, 2007)

Thanks so much for your replies.

Lalaby - NK assay w/intralipd

50:1    6.2%
25:1  4.0%


NK assay % killed panel
50:1    13.4%
25:1    7.9%
12.5:1  4.1%
IgG conc 12.5 50:1  7.8%
IgG conc 12.5 25:1  7.1%
IgC conc  6.25 50:1  11.1%
%CD3              70.1%
CD19                1.7%
CD56              23.6%
CD19+cells CD5+ 17.6%

Its all a little complicated to me, does it give you more info?  Also I am due to cycle on 25th jan is that possible now?

Thanks in advance
Mandy xx


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## lalaby123 (Sep 21, 2008)

Mandy Your overall nk activity is ok and u respond well to both intralipid and ivig so he will giv u combination for your raised nk cells 

25 Jan may be possible but pushing it with humira and LIT u will hav to get cracking quickly ask dr g 

good luck atleast u now know what the issues are and can address them xxx


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## Cozy (Jul 17, 2008)

mandchris,

if you are going to have donor LIT, then you would need to go to Athens for that and Dr Tsagaris only does it every two weeks, the next clinic is 1st Dec, then 15th December. To do the LIT properly you need to have 2 lots - 4 weeks apart then retest your LAD levels 3 weeks after that to see if it has worked. So it doesnt give you much time. If you wanted, you could do without the LAD retest and just test when you get a BFP to see if you need anymore LIT. Though doing it that way you dont know whether your LAD levels have gone up enough or not when you ideally need to know.

You can have LIT 2 weeks apart if you cant do 4, but Dr T prefers to do 4 weekly.

Also, Dr T advises that you dont take steriods for one month after LIT, just incase you will be taking any.

Hope you manage to arrange everything in time

Cozy


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## Newday (Apr 27, 2005)

Can I ask a question girls? When do you think I could expect to see a positive HPT after a 3 day transfer?
Dawn


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## Ourturn (Oct 8, 2008)

Newday - I would test 14 days post egg collection, you could get a +ive as early as 10 days post ec but best to leave it until 14 days for a more accurate result     

Hi Ladies 
I am seeing Dr G next Monday (going up to London Friday for a long weekend). My consultant has given me a brief and innacurate case history to give him. I will correct and add to it. 
I will tell him about my allergies, unk's etc. Anything else I need to let him know and ask? Want to make the hour with have with him count! 

Thanks 

Anna x


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## lalaby123 (Sep 21, 2008)

Newday i agree with sobroody 14dpt EC is the safest earliest time to test

Sobroody do you realise if you go on Friday you can't have the blood tests on the same day?


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## Ourturn (Oct 8, 2008)

Lalaby - my appointment is on Monday, I'm just going down to London on the Friday as I have a party to go to and will stay at my sister's DH is joining my Sunday


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## Skybreeze (Apr 25, 2007)

*New home this way lovely ladies >>>> *http://www.fertilityfriends.co.uk/forum/index.php?topic=217835.new#new


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