# Fertility & Gynaecology Acadamy (Amin Gorgy) : Part 7



## Skybreeze (Apr 25, 2007)

*New Home Ladies*
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## Ourturn (Oct 8, 2008)

Marking, me 1st


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## deegirl (Jan 17, 2009)

Thanks Lalaby, that makes sense now, glad I haven't been overcharged!  Hope you're keeping well and beginning to relax and enjoy your pregnancy.

Hi to you too blueprimrose and everyone else.  

Dee


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## Saffa77 (Feb 6, 2008)

bookmarking


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## niccad (Apr 28, 2009)

just bookmarking & still catching up from the last few days. Hope you're all well xx


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## Sprinkles (Nov 6, 2008)

just marking


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## Jofie (Aug 7, 2008)

Hi everyone,
Haven't been around for the last few days - lalaby, great to hear your scan news. 

diane - don't know if it's the right word but congratulations on your surrogacy plan - fingers crossed your tests come back with the right result so you can move forward. 

bankie - yay for getting started, sending  

sprinkles - hope the 2ww is going OK   

Nix - when I had my BFPs I got pain in my hips from really early on from the ligaments stretching, not knees though. Hope you're not still in a lot of pain.  

Bluprimrose - now freaking out slightly about the clexane myself because I read that some Chinese herbs have a similar effect to the clexane and aspirin and you should be careful if taking them at the same time. Think I'd better ask my GP for a full blood count... 

Hope everyone else is having a good day. 

As for me, I saw Dr Gorgy this morning for my scan and bloods for my upcoming IUI. I have a couple of good-sized follicles, and he wants me to start using the ovulation testing kit from today (I actually started a couple of days ago because I was worried I might ovulate early). I go back for another scan on Wednesday, unless I get the LH surge before then. I've been drinking the vile Chinese tea and keeping warm with my hot water bottle and my lining is looking good which is a big relief. Cyst is still there, but DrG didn't seem too worried. 

I asked DrG why he'd prescribed me gestone last time and it was because of a particular test (CD-something-or-other) that I'd never had done. So I told him that when I did my first tx and got BFP it was with cyclogest only, so he agreed I could do without gestone this time which will save a bit of money and stress. 

I heard back from the Homerton where our NHS cycle will be and we're near the top of the list. If this IUI doesn't work, I've decided I'm going to have three normal cycles before we start and stick with the herbs, acupuncture and diet to get my hormones in balance as best I can and improve egg quality. I don't want to waste those cycles though, so will be looking for somewhere to have natural cycle IUI (probably self-funded at the Homerton as will be a lot cheaper than with DrG). I don't quite know what to do about the immune treatment for the natural cycles. Any advice very welcome. 

Better go and do some work I suppose...


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## niccad (Apr 28, 2009)

Hi all - sorry I haven't posted for a bit - It's been busy on here & I've taken a while to catch up...

Cozy – so great that you’re all booked now.. roll on 12th Dec  Good luck with IVIg on 7th December and Intralipids on 10th December

Berry – great news that your GP is being so helpful. 

Sprinkles – how are you getting on in the 2ww and are you going to DrG to test? 

Bluprimose – great news not needing IVIg & intralipids… YIPPEE! I’m on 40mg clexane & TBH I didn’t ask DrG much about why. I’ve found certain spots on my tummy cause less bruising (after the horrific first few attempts) so I’ve not clustered all injections around the same site. It seems to be working… 

Louiseb26 – the cost is scary isn’t it. I   you have BUPA as it really helps with the tests… I just got my first cheque back from them which is a huge relief. Bupa will pay for investigations but not treatment so all the tests are covered. 
When you get the results back I’m sure you’ll become a pro really quickly. The girls on here are great with information sharing as well & you’ll be mentoring others before you know it

Lalaby – such great news about the scan & must be so strange so soon after your positive. Good luck for the scan next Friday x

Nixf01 – thinking of you today and praying for a positive   

Bankie – great news on TX starting

Saffa – I hope that DrG has got back to you. I asked my GP to refer me to Dr Eskander. I then called BUPA and got an authorization code.. I then claimed the £ back… 

Diane - so good to see your post and great that you’re formulating a plan. I really admire your strength & want to wish you the best of luck x

Sobroody – I hope the consultation with DrG goes well. I always have to write down a list of questions as I get confused every time I see him. 

Jofie – glad that your appointment went well. Guessing it was packed there today after his holiday. I hope those follies are growing nicely for the next scan.

Re the gestone injections – I was really worried about these but they are actually fine. I have a load of little bruises on my backside now but there is surprisingly little pain (considering the side of the needles). My DH does them, but I’m sure if you had a mirror at the right height it would be relatively easy to do them yourself. I called loads of pharmacies today & no one has 100mg of gestone which is annoying if you aren’t getting them from NHS as they are the same price for the 50mg ones! (so basically twice the price!!). Nothing is ever easy is it!

AFM – well my embies survived and I had 2 4-day old embies put back last Thursday – followed by IVIg (which took almost 5 hours!! – poor Dr Eskander). Now the waiting starts. I’ve no idea when I should be testing. My NHS clinic say 2 weeks after ET but I know DrG says 2 weeks after EC. Being as there was no EC do you think I should be doing 2 weeks after ovulation??

Hello to everyone I've missed 
Nic xxx


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## Jofie (Aug 7, 2008)

niccad - fantastic news on your embryos surviving the thaw and having two put back!    for the 2ww.

others will probably have dfferent opinions but I think 14 days post-ET is a little weird. For both my tx cycles I have been told 14 days post-EC/ovulation and this makes sense to me as it would be when you'd be likely to test if TTC naturally.  14 days post-ET would make it 18 days post-EC in your case, which seems like an unnecessarily long wait to me - especially if knowing sooner makes a difference to any immune tx you're having.


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## Ourturn (Oct 8, 2008)

Hope Nix won't mind me saying but she got a bfn today 

Again Nix, so sorry and thinking of you and DH                          

Anna x


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## ells (Mar 19, 2008)

Just book marking ladies.  Hope you are all okay?        Will pop back on when things not so hectic   .  

Ells


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## Cozy (Jul 17, 2008)

Nix,

sorry to read you got a BFN  

Cozy


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## Sprinkles (Nov 6, 2008)

Nix so sorry for your news hun        take your time and look after yourself       x

niccad congrats on your embies and transfer hun, welcome to the madness x


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## ells (Mar 19, 2008)

Nix hunni so sorry to ear your news.  Sending you massive      

Ells


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## bluprimrose (Sep 1, 2009)

hello all

hope you're all well this evening.

nix, am so sorry    .

niccad - are you upping to 60 or staying on 40?  and do you take it in one go - one 40mg injection?

jofie - i was advised to stop chinese herbs during tx so i stopped taking mine the day before i started down regging.  i think they can be quite potent!  what dose of clexane are you on and when do you start/stop/start taking it in your tx cycle?

i was hoping to speak to dr g today but he's just back from holiday and soooo busy that i haven't spoken to him so am still in limbo about my dose, but i hope to have it all sorted by tomorrow if i get hold of him.

sorry for lack of personals but i hope everyone else is doing well.

   for everyone who needs them and good luck to all who need it!

bpxx


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## mag108 (Jun 28, 2008)

ladies
just bobbing on to ask a practical questions.What is the actual address for Dr Tsagaris?
ta
X


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## Diane72 (Oct 29, 2007)

Nix, so sorry to hear your news     

Diane x


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## Jofie (Aug 7, 2008)

nix - so sorry to hear you got a BFN  

bluprimrose - i wanted to get the benefit of the herbs this cycle and only just started them, so after discussion with my acupuncturist decided to take them during tx. But I will make sure to check my blood count - yet another trek to the GP  . I'm on 40 mg of clexane at the moment - started on day 7, same as last cycle, then I'll go up to 60mg after two weeks. I think DrG meant for me to start straight back on 60 mg, but I thought it better to build up to it and I had the prescription for the 40 mg so went with that. When I told him I was on 40mg he just nodded and seemed happy - don't think he remembered he'd told me to start back on 60mg!

mag - sorry I don't have DrT's address handy - hope someone else can help.


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## niccad (Apr 28, 2009)

Nix - I'm so so sorry to hear your news.     I hope that you are getting lots of support from friends and family. What we're all going through is so tough and so unfair. I find myself wanting to scream 'why me' so much of the time but know that it's the hope that it may one day work that keeps us all sane. Thinking of you xx

Mag - address is:
Dr. Nickolas Tsagaris, M.D. 
University of Athens, 
Athens, Greece
fax 30 210 965 8442
phone: 30 210 899 3200

Bluprimose - DrG told me to stay on 40mg the whole time. I don't think he would up my dose as I've been a bit of a bleeder this cycle and have real problems stopping the flow from my injection sites if I hit a vessel. 

Jofie - thanks for your thoughts on testing date - I think i'll test on Sunday which will be 14 days post ovulation. Has everyone else just booked in for a blood test with DrG or done pee sticks and decided whether to see him based on that? .. um... perhaps I should call him... 

Love to all
Nic x


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## Han72 (Feb 15, 2007)

Hi all

thanks for the messages. of support, much appreciated  .  

Can anyone please advise as to how I reduce my dosage of pred. My doc here thinks I was on 20 so he's telling me to stop straightaway, but I was taking 40 so I think I need to reduce gradually rather than stop dead but I don't know at what rate.

Also can anyone who's done a full cycle of ICSI/IVF with Gorgy give me an idea of the costs of cycling with him (excluding humira)?

Many thanks

Nix
xxx

PS Jofie is right re the testing early, they only tell you to wait til 14 dpt to make sure that you'd get a positive even on the crappiest of cheap tests.  First Response Early Detection will pick up the most minute amounts of HCG in your urine so the danger of testing early is you may get a false positive from the HCG shot. However, even if you had a 15K trigger, unless your metabolism is unusually slow, it should be long gone 10/12 days later.  In my case, I had a trigger of 10K on 5/11 and 2 booster shots of 2500 and 1 of 1000 during the 2ww. I tested daily from the day after my last jab (of 1000) on 15/11. The peesticks turned negative on 19/11.  

If you really want to be sure and you have nerves of steel (and money to burn) you could test every day from ET that way you should see the lines getting weaker as the trigger wears off and then stronger again as your embie(s) implant and natural HCG kicks in


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## bankie (Dec 27, 2007)

Nix I was so sorry to read your news hun.  Sending you massive


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## niccad (Apr 28, 2009)

Nix -   
I asked my GP for a prescription yesterday to wean me off pred should I get a negative result (I figured I wouldn't want to be trying to get there again just to stop the stuff). I'm on 25mg, but he said to reduce by 5mg every 2 days. I've read that it's ok to reduce by 10mg every couple of days if you're on a higher dose until you get down to 15mg and then to take it slower. If I was you I'd do 30mg for a couple of days, then 20mg, 15, 10, 5. 
I haven't done a full cycle with DrG but will if this one works, so I'd also be interested in the figures. Thanks for your info on testing date - I'm doing natural FET (well except for the DrG stuff) so there was no trigger shot. Any HCG in my system now would mean it's worked, but I know it's too soon at the moment. Will test early though... especially as there are tests in the bathroom cupboard and they have been calling to me already...  xx


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## Ourturn (Oct 8, 2008)

Nix - I would reduce by 5mg every two days. I did this even when on 20mg


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## Newday (Apr 27, 2005)

I did a test this morning day 8 post 3 day transfer and negtaive. Now I know you will say it's too early but it was a 10mui test so I guessing it's over for me
dawn


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## Han72 (Feb 15, 2007)

Newday

Sorry to be boring but, yep, it's too early to say! Don't forget that tests are not 100% accurate either. And there is absolutely no point in testing early unless you are able to say to yourself, ok it may be negative now but there is still the potential for it to turn positive.  you are only 8dpt, implantation doesn't usually complete until  7-12 dpo and then it'll take a while for that embie to start pushing out enough HCG to show on a HPT. Give your embies a chance hon, they're only just getting started!   

Also please note that on one particularly stressful day following an FET, I tested neg on a peestick but that days bloods showed a bHCG level of 22...

xxx


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## niccad (Apr 28, 2009)

Newday - I agree - it's too soon for your little embies to have had a chance to push out any HCG. Don't give up just yet. I'm planning to do my first test 8dp4dt but will be realistic if the result is negative & will keep testing.... fingers crossed for you hon xx
I just discovered that Boots have a 2 for 1 on first response tests... Oh the temptation to bulk buy!!


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## Ourturn (Oct 8, 2008)

Newday - just to add, if you are using the internet cheapey sensitive sticks they are useless! I think you need to have a beta hcg of over 100 to register on those. 1st Response are the best. The day I got a very very faint positive, my beta hcg was 23...So I do not believe these is a test out there that really can test from 10 in my opinion!
Good luck!
Anna x


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## ells (Mar 19, 2008)

Hi Ladies,

Nix  hunni sending you lots of    , We calculated that ICSI with Dr G would be around £12000 with IVIg, intralipds steriods etc but no humira.  We are going to be using our NHS go before we go self funded again.  On the pred, you can reduce by 2 tablets every 2 days, I wouldnt recommend doing it any quicker as it will make you feel yukky!  What are you plans?

Newday     urhum ' STEP AWAY FROM THE PEE STICKS'  Way way too early hun!  Like the other ladies have said those cheapy tests are crap dont read anything in to them.  Sending you lots of       and    .

Sprinkles how are you doing hun?  Are you starrting to   it yet?

Diane, how are you?  How did the meetings go?

Cath, how are you doing?  Have you started to grow a bump yet?

Omni, hope you are doing okay and that you have a nice round tum.  Let us know how you are getting on   .

Lalaby, how are you feeling?  Great news on the scan.  Has the news sunk in yet?

Jolfie, when we saw Dr G he told us not to take any chinese herbs/medicine as you dont know what's in it and he said that it could counteract the IF drugs.    I must admit I was thinking about taking them when I start up my acu again in a couple of weeks time, but not sure yet.

BP, have you managed to get hold of Dr G?  I know its a long shot but have you tried to email him?

Choice, if you are still reading, hope you are okay and that you are now growing a nice bump.   

Cozy, Saffa, Sobroody, Bankie, Mag, DeeGirl, Louise and anyone I may have missed   .

AFM, well I am still waiting on my cheque from Dr G, it really is a nightmare trying to get the money back.  I think I might claim it directly from BUP next time!  I am emailing our local clinic today to see about our first appointment.  I then need to get the humira and start taking it as I think I am right in saying that I can have that and do the LIT treatment   .  I am trying to find out if I can get humira cheaper from Canada - I will let you know if I have any joy!  I still need to book in for my hysteroscopy with Dr E but I just havent got round to doing that.  I really want to get it booked in before Christmas!

Anyways, hope you are okay.  I am off to 'work from home'   this afternoon as I am still keeping an eye on my mum - she's doing really well with her recovery, small steps.  She looks better too which is also a good sign.

Ells


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## Saffa77 (Feb 6, 2008)

Nix so sorry to hear your news   

Ells - glad you bought that topic up regarding insurance etc, I went to go see Dr Gorgy and because I was going to get my insurance to maybe cover some bloods I had to see Dr Eskander who did a scan (got charged (£200)  which wasnt really necessary but because he was an endo doctor too he thought he would do a scan.  So I walked out that day paying £1600 plus the £200 for the scan and got told I had to pay and then he will send it to insurance, now where is the control in this??  I called my insurance to find out if there was anything claimed by them and no there was nothing now I know in the past all my docs send it directly to insurance and they get their money immediately, this worries me a bit because how am i going to know how much insurance has paid Dr G etc!! they could be making double from us patients - I hope I get my money back too.  Like I said before and will mention to Dr G is that we are paying a fortune and should get better explanations and stress taken off our backs seeing as we already have IVF stresses etc.  The thing is phoning the receptionist dosent help because she dosent know half the things they do (not her fault) dosent seem like a professional system?  Do you ladies agree or is it just me?

Sorry rant over.

Sx


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## Cozy (Jul 17, 2008)

Mag108,

Dr Tsgaris clinic address is 43 Ypsilantou Street, Athens, 10676

Cozy


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## Jofie (Aug 7, 2008)

Evening all!

Nix - ICSI with DrG is £3300 plus HFEA fee. 
IVIG is £1350 (I had 2 treatments as can't have intralipid). Intralipid is, I believe, £350. 
I got the Prednisolone and Clexane from my GP which saved a few hundred and after the first lot, got all my stimming drugs etc from Ali's in Shadwell because he charges, as an example, £29 per ampoule of Fostimon as compared to DrG's £55  . I was stimming for 12 days on 600mg so that works out at £1392 if I'd got all my drugs from Ali's, plus £80 odd for Pregnyl (from Ali's),  and approx £140 for cyclogest (from London Women's Clinic).
DrG charges £90 per consultation (not during tx). 
Estradiol tests during tx are £35 from the Doctor's laboratory next door and he likes to test every couple of days (think I had 5 altogether).

I think it all worked out about £9k altogether, though I could have saved a bit more on drugs. A bit cheaper than my last tx at the Lister, even including the IVIG!  

Ells - Glad your mum is doing better.   I know that's what all the clinics say about the herbs - that's why I haven't told DrG I'm taking them! . I'm not worried about the purity of the herbs as I trust my acupuncturist and don't think I can come to any harm as long as I get my blood count checked. I would be more wary if I was doing IVF and on a bigger dose of stims. I've looked into it and there's no conclusive research that says herbs have a negative effect on tx, the IVF clinics are covering themselves because it's not something they have experience with (which is understandable). I feel like it's doing me good and my lining is looking good, so I'm happy (for the moment anyway  ). 

Saffa - for me, what DrG's set up lacks in slick professionalism is more than made up for in terms of personal attention and continuity of care. I'm happy to take responsibility for understanding the in-and-outs and managing the drugs etc. without much help. But then, I don't have insurance, so haven't had to battle with that side of it. Also, I am in London which makes a big difference. I think it must be very hard for you being so far away. I hope you feel the benefit of being looked after by DrG as your tx progresses - he is caring, and that makes up for a lot in my book. 

As for me - no LH surge as yet - yippee! Anxiously hoping I can make it to tomorrow's scan without it...


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## Bettysjourney (Jun 11, 2007)

Hi Nix
I just read your news - soo gutted for you hun, you really deserved this so badly, I am very sorry.  I know how you must be feeling - it just sucks all this business.      Really hope you can persuade DH to try again.
Take care sweetheart - dont overdo it just yet.

Well I'm off for my follow up with Dr G tomorrow - think I may need LIT treatment but we'll see.  Feeling a little nervous that we've opened a can of worms.

I've been reading about claiming back from Dr g's office for BUPA claims.  I've managed to get a referral letter from my GP so I guess they will need a copy of that before they release monies - does anyone know how it works??

Love to all
Betty xx


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## mag108 (Jun 28, 2008)

Nix I posted on PR thread but just to say again   how sorry I am it hasnt worked out this time. 


Sorry I havent been on much, have been reading but my time has been taken up organising trip to Athens for LIT tx in Jan
This is what it looks like. Mon: Man-London by train, then gatwick xpress, then fly to athens Mon pm. TX pm Tues, fly back to Ldn. Stay at Gatwick tues nite for train back to Mancs then off to work pm. so its been 2 train booking, 1 flight and 2 hotels all researched on Trip advisor etc.....am pooped!

...any top tips on hotels in Athens near to the Evangelismos? Have looked up Melia (just a tad on the exp side) and the Amalia.
X


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## Newday (Apr 27, 2005)

Can I ask you ladies a question? My test date is Monday IF i get a positive it will be a miracle I cannot get to have intralipids until 9th Dec i.e. 9 days later will this be too late? We have just found out that we have an inspection at school and I daren't take any time off until after that

Any advice info appreciated
Dawn


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## hanadiz (Jul 23, 2007)

nix, so sorry    
I hope you are feling better and am glad that you are thinking of an action plan, you are strong and a fighter and you will get there, I know 

I have a questions ladies, I met dr gorgy and he suggested that i need  endomtrial biposy, have LIT either from my husband or from a donor. 
my question is if we are taking IVIG why do we need LIT? i know its supress the immune system and i know that IVIG is one of the most researched way of controlling the immune issues, also they only take 4 cases in portland hospital and then I have to fly to greece? is it really necessary to have LIT and IVIG?

also, concerning the biopsy, its to check on nk cells in the lining uterus, but i thought thet can test that from the blood test for nk cells?? unless he tests for infections, mag (i read about it its the stickness of the uterus) and if there is protein (these are the things that i found while researching about the biopsy

I also asked him about CGH, as LWC are doing it now for trial but I still can do it through him, but we need to take a sample of blast embryo and put 2 back and then freeze the rest, results will be back in 5 days and we will see the out come

i checked with another doctor that i always consult , he said LIT is the same as IVIG, no need for biopsy as i did hysterscopy and all was clear and i am doing the nk blood test.

I am so confused as each doctor gives you different issues to deal with

I have to add that when i had my follow up at ARGC, they said to explore CGH and they think I am having implantation issues as my embryos are very good, always have frosties and they thaw very well too

does anyone having implantation problems? any suggestions?? even mr taranissi said that i am an excellent candidate to get pregnant but I am not implanting? even though i got preg 3 times but never stayed (2 chemical preg + 1 missmiscarriage at 6 weeks all my preg happened before i found out I had immune problems)

any advice will be great,

Thank you

Hanadi


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## hanadiz (Jul 23, 2007)

dawn,
I guess you can take it home there is homehealth or something similar ( i have there contacts I will check it out for you) and they can arrange for a nurse to come over to your house and give you the drip, let me know if you are interested and i will look for there contacts
by the way they are not expensive, may be cheaper than doing it in the clinic

Hanadi


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## Cozy (Jul 17, 2008)

Hanadiz,

LIT is completely different to IVIg. Did Dr G not explain it to you? LIT is used for the Leukocyte Antibodies and IVIg is usued for high NK cells and high CD19+CD5+. I would ask DR G to explain this in more detail.

LIT can have an effect on your NK's and cytokines (as I have just found out, a friend of mine went to Athens, had donor LIT and her LAD has more than doubled and her cytokines and NK's have lowered too)

I would highly recommend you go to Athens rather than going to PA at London and have donor LIT - the results are usually better.

The uterine biopsy is used to test for uNK cells and this is the only way you can find out if you have these cells. The NK cells in your blood are different, but some people who have them in their blood have them in their uterus - I have both.  I have had steroids in the past to deal with my uNK cells and this current cycle I am following Dr Beers protocol and have had Humira -he says that is the only way to deal with these aggresive cells. I have implantatiion issues and it is thought that the uNK cells are the main problem for me.

A hystersocopy does not check for uNK cells, it checks for fibroids and other issues. I have had one of those and it came back with no issues.

From the sounds of your post, you must have had the full immune testing done and your levels must show that you need IVIg and LIT. If you are concerned/confused about anything, I suggest you speak to Dr Gorgy about it. I personally would not take advice about this from any other Dr, unless it was someone well up on these matters - i.e Mr Taranissi, Dr Ndukwe, Dr Tsagaris in Athens, Dr G, Dr Sher or the Beer Clinic, as in my opinion, they dont appear to be up to date with the immunology stuff and dont think half of it is neccessary, though the results speak for themselves in my opinion.

This is all very confusing stuff, especially when so many different people give you different advise, inlcuding Dr's! I have just gone on what I have been told and what has happened to me.

Have you read Dr Beers book, is your body baby friendly? if not, I would recommend you get it, it will help you get your head around everything.

Cozy


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## hanadiz (Jul 23, 2007)

cozy,
Thanks and yes, I am reading the book you suggested.
I will talk to Dr G again in Jan when we plan my treatment, in Athens, do they give you a donor LIT or from my husband if he matches?

and why you dont advice doing it here in portland hospital? any reason for that?
as I need to sort my visa before i start anything (am not a Uk national)

Hanadi


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## Cozy (Jul 17, 2008)

Hi Hanadiz,

my reasons for recommendig Athens for LIT are:

1. Dr Tsagaris follows Dr Beers protocol, he does 2 lots of LIT, 4 weeks apart, you then retest your LAD 3-4 weeks after that to see if it has worked or not.

2. Dr Armstrong only does one lot of LIT and he doesnt retest, so you dont know if it has worked or not. Unless you arrange your own retesting. Then if it hasnt worked, you will end up going to Athens.

3. Dr T does donor LIT which is usually more succesful, especially if you have a match with your partner. Dr A does not do donor.

4. Dr T charges €500 for paternal and €600 for donor LIT. Dr A charges £1150. The cost of going to Athens twice including flights is not much more than 1 visit to Dr A, if you travel alone.

These are just my opinions, but I know many others feel the same. This is why Dr Gorgy is trying to sort out him doing LIT at some point.

On the negative side... isnt there always one  ... Dr T can be a nightmare to get hold of to make an appt.

Cozy


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## berry55 (Sep 4, 2008)

just bookmarking  xxx


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## deegirl (Jan 17, 2009)

Hi Ells
I know this is expensive stuff but £12,000  

Does that include trips to Athens for LIT?  And does it include tests and consultations?  I better get saving!!  I'll be booking some accommodation for 2 weeks while I'm cycling with him in July so that will be even more money!!  

Thanks!  x


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## ells (Mar 19, 2008)

Hi Dee,

Thats what we were estimating for worst case, ie 4 IVIg's, humira etc and all the re-tests too.  We couldnt believe it when we worked it all out   but hopefully we will be okay on this next go   .  I am also going to try and convince my cronhs doctor to give me humira - i figure if you dont ask you dont get.....     .

Hope everyone else is okay?

Had a busy day and didnt sleep well last night so feeling a bit shattered.  Up early for my weekly trip to Essex tomorrow M3 and M25 joys   !  

Nightie night ladies, sending lots of      to those that need them.

Ells


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## Sprinkles (Nov 6, 2008)

Hey girlies

Well nearly one week through 2ww and driving myself slowly insane symptom watching, however had a bit of a nasty one this morning, woke up with a very faint sore throat, not good.  After all the drugs this was the last thing I was expecting.  So in need of any positive stories if there are any of any ladies that had sore throat through 2ww but still got a BFP?  Anyone?

S x


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## Newday (Apr 27, 2005)

I am on day 10 of 2ww and had loads of symptoms day 8 they have all gone today. CBdigital are coming up NOt preganat I am going mad going for blood test later as it is driving me mad mad mad.

This is my very last go I am now convinced it is over.
Dawn


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## Sprinkles (Nov 6, 2008)

Newday sorry hun   are you not too early to test though


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## Saffa77 (Feb 6, 2008)

Newday -   hope its because you have tested early!!

Quick question ladies:  my CD19+CD5 levels were 11.6 (max should be 10)  which is not much higher then it should be and have been given 100mg gestone!  Which i think is a high dose?  Can I get away with not taking these and sticking with my ultrogestan that my Portuguese clinic prescribe??  In my last cycle when I got a BFN I only bled a good week after BFN and when my progesterone levels were tested during that cycle they were perfect!  Just getting confused as to why gestone is used with ultrogestan or cyclogest.  I spoke to the portugues doctor who said he dosent understand why I need to be on gestone - all confused now!

Sx


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## Cozy (Jul 17, 2008)

Saffa,

100mg is the standard dose of Gestone. If Dr G thinks you should have gestone, then I would have it, but if you dont want it or you dont have any other reason why you are on it, then it is your choice not to have it and just use Utrogestan or Cyclogest.

Gestone is used for various reasons, one of them is because it is absorbed better in your body, but if your progesterone levels were good before you will proabably be ok with it. Your  
will thank you for not having it  

I would speak to Dr G and see what he says.

Cozy


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## Saffa77 (Feb 6, 2008)

Thanks again cozy for your advice.

I will speak to DR G and will ask him if its ok i just take my utrogestan - surely if my levels were not ok in my last cycle the doctor would of upped my progesterone am i right?

Sx


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## niccad (Apr 28, 2009)

Quick question - I'm 7dp 4dt and I'm getting a sore throat.... Should I call DrG??


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## deegirl (Jan 17, 2009)

Thanks Ells, it's better to over-estimate than under-estimate I guess but to be honest with 4 IVIGs etc your probably pretty much spot on.  You're just right in asking your crons doc for humaria, you might as well...I would!  My GP was great last time and prescribed prednisolone, clexane etc.  Hope your mum is feeling good today.  

Hi to the rest of you.  Hang in there those on the 2ww and keep busy!!

Dee


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## deegirl (Jan 17, 2009)

Hi Girls

I've just got my results back from Dr G for my LAD and it seems REALLY low  , I'm hoping that LIT will work when levels are SO low to begin with.  Here they are:

T cells IgG+ 1.0%
B cells IgG+ 3.1%

Has anyone else got such low levels and found that LIT brought them up to 50+??  

Thanks....Dee x


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## Saffa77 (Feb 6, 2008)

Ladies

Bad news as i was guessing!!!! so depressed! 

Here are my results: for my LAD:

Flowcytometry - weak positive
T-Cells IgM+ 6.0%
T-Cells IgG+ 39.5%
B-Cells IgM+ 5.8%
B-Cells IgG+ 39.6 %

DQ alpha for me is 0101.0102 and now the thing is the lab says my other halfs results are missing?!!!!!

Do I need LIT?


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## niccad (Apr 28, 2009)

Morning Saffa - afraid to say but it looks like you need LIT. BOOOOOO

I've upped my prednisolone dose slightly as a result of my sore throat and it seems to have worked... just worried that it's too late to make a difference and my body has already destroyed by beautiful embies   I was naughty and tested this morning & of course it was negative... Just need to convince myself that 8dp4dt is too soon. No doubt I'll be testing again tomorrow though as now I've started...  . 
Newday - how are you getting on  

Nic xxx


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## Cozy (Jul 17, 2008)

Saffa,

needing LIT is not bad news and not worth getting depressed about. It is quite easily sorted  

Yes you will need LIT as your B-Cells IgG+ need to be over 50. Yours are no where near as low as some peoples.

As you dont know your other halfs numbers yet I cant say whether you would need donor or could have paternal. However, generally people get a better response from donor LIT - which means going to Athens. Which is easy enough to do.

However, the time to take to do it may be  problem if you want to cycle in January. Dr Tsagaris does 2 lots of LIT 4 weeks apart then you retest to see if it has worked, ideally prior to doing a cycle. If you are pushed for time, you can do 2 lots 2 weeks apart. You dont have to retest prior to doing a cycle.

If you went to see Dr Armstrong in London, he would do you 1 paternal LIT only and he doesnt retest to see if it has worked or not.

I trust they are looking for your other halfs results   

Cozy


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## Chicky Licky (Oct 13, 2009)

Just bookmarking!


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## Saffa77 (Feb 6, 2008)

I have read somewhere that over 30% is acceptable but ideally they should be over 50% is this right?  If I dont have LIT are my chances of IVF working Zero??

Sx


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## lalaby123 (Sep 21, 2008)

Ladies, i was thinking god the girls have been really quiet lately I better check up on them and then I see I have missed on 4 pages of reading!!! I must have not pressed the notify button on the new thread.....

anyway catching up now.....

Nix - so so so sorry it didn't work for you this time      I am so glad you are already thinking of your next step and considering doing it with Dr G. He really will monitor you closely wishing you a good boozy xmas and hope you will regain your strength soon to start in 2010. xxxx

Jofie -  Dr G will want you to do a blood test 10 days after your 4 day embie transfers. GOOD LUCK XXX

Saffa - As far as I know the only thing that Dr E and G charge more to Bupa is the consultation fee which is £250 if its bupa and £120 if its self paid. The reason Bupa won't have their claim in their records is that it takes Dr G's accountant about 3 weeks to draw up an invoice and process the form etc. So you need to be patient but you'll get there in the end. I agree that Dr G's lack of 'system' can be very frustrating and at times it drives me up the wall HOWEVER we have to bear in mind that he is dedicating himself to this one very controversial cause and helping women like us who would be wasting our time elsewhere and in doing so he is single handed and therefore suffering from major early teething problems. I am sure in time he will put in place more systems and staff but in the meantime us earlybirds have to put up with the trials and tribulations of a one-man band. I am sure Dr Beer had to suffer similar problems at the start of his quest but look at his clinic now. I only hope the same for Dr G and if i lived in London I would offer to be his practice manager and sort everything out!

Newday - I think 9 days past a BFP is too late. Dr G will want you to have it done sooner. You can get a prescription from him and then contact Healthcare at home who come and give it to you at home it costs £285 and they can also do saturday at extra cost. Also i wouldn't trust your negative from digital HPT. They are usually sensitive from 50iu of hcg which is way too early for you. 

Hanadiz - Cozy has said it all - Dr G offers the most comprehensive immune protocol in the UK so I wouldn't take advice from any other doctor as it bound to clash with what he says. If he wants you to do endo biopsy I would do it as it could give the reason behind all your implantation failures. It also increases chances of implantion due to trauma to the endometrium. (proven by studies)

Sprinkle and Niccad - I had flu like symptoms in the middle of my 2ww and thought it was all over I also had cold sores and thought it was all over. But as you know it wasn't  so hang on in there and stay positive          

AFM ladies I went for my 2nd scan today 5 weeks 4 days. Was very anxious and nauseos. As soon as she popped the probe in she said oh yes we have a heartbeat )) i burst into tears as I could see this little bean pulsating away. I could not believe it. I had never seen such a thing before. Then I jokingly said shall we look to see if there is another one hiding (last scan only showed one sac) and lo and behold she moved the probe and there was another smaller sac and it had a heartbeat!!!!!! I don't remember the rest as I was in floods of tears. There was also some blood right next the two sac which I hope is not the evil NK cells and blood clots pooling to attack the embryos but they said its quite common. I am just so relieved to have gotten this far and I know its all because of the immune treatment as otherwise my body would have rejected the embryos like it every other month. I know its still early  days and I could lose one or both but I am so grateful to everyone who has helped me get this far and that includes FF and all the girls on this board who without their advice and support I wouldn't have got here.         feeling very emotional as you can imagine. 

I can't wait to tell Dr G that he was right because he thought it was twins but I told him after last scan that he was wrong and it was a singleton! Bless him, he has tried to call me twice last couple of days in response to an email I sent him before his holiday. He takes his time but he really does care and all of you who are seeing him are giving yourselves the best chance of success with your next treatments. 

xxxx


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## Zeka (Mar 7, 2009)

Hello ladies, I've made an appointment to see Mr G on Mon 7 Dec, so just bookmarking this thread in the hope of getting a peek into how he operates in the meantime.
Love and luck to all 
Zeka x


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## Sprinkles (Nov 6, 2008)

lalaby you lucky lady you must be extremely happy, wishing you a happy and healthy 8 months

Saffa LIT isnt as difficult as it first seems I was totally against it at first but it was really straight forward and far easier than I thought, also you have a pretty good starting block with 30ish figures to start from and can only imagine that your figures will rocket after LIT.  Whatever you decide good luck hun.

niccad glad the sore throat seems to have eased, to be honest mine has as well, just seemed to be a rogue day, however I do think that this cycle for me is a BFN anyways as all my symptoms have disappeared overnight just like every other cycle I've had, so not holding out much hope looks like its all over for me, but still have to go through the motions until test date.  Fingers crossed your test changes hun xxx

Cozy you all set to jet off?


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## Saffa77 (Feb 6, 2008)

thanks sprinkles but would I need to have more than 1 LIT?  its just I am already booked the donor for when I get back from NZ!!  dont see myself getting to Athens twice from Scotland - just seems so far away Athens.  Does it mean that with my figures though that there is no ways IVF would work?


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## lalaby123 (Sep 21, 2008)

Sprinkle please don't lose hope its so early and you have every chance so try to stay positive till the end.... I had no symptoms whatsoever other than bad ones like flu like symptoms which you did as well so you never know......xxxx


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## Cozy (Jul 17, 2008)

Lalaby, twinnies how wonderful. I thought when you gave your initial numbers they were high for a singleton. it is early days like you say, but you had great numbers and you have 2 heartbeats, its a very good start, and long may it continue    

Sprinkles, I go on 12th December... not too long to wait now. Please try and remain positive, there is nothing to suggest so far that it hasnt worked    

Saffa, your levels do ideally need to be over 50, though there is nothing to say that you couldnt have a pregnancy if they werent over 50, its a chance you would have to take if you didnt have LIT. Personally I would have it done. Athens is not that far away and its easy to get to. I didnt even think twice about it, just read up on it, decided where to go and booked it. I am glad I did it, otherwise if my next cycle hadnt worked, I would have been thinking "what if". Anyway its your choice, you have to be happy with what you decide.

Hi to everyone else.

Cozy


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## Saffa77 (Feb 6, 2008)

Found this online when I googled Leucocyte antibody detection test results:

LAD Test Results 
Normal results for a leukocyte antibody detection test means that you have tested positive for leukocyte antibodies, which are present at levels of above 50% in your body.

Borderline normal test results indicate that you have leukocyte antibodies present in your bloodstream but that they are present in lower quantities (30 to 50%).

Abnormal levels are defined as very low quantities of leukocyte antibodies, defined as less than 30%. 

If you have abnormal leukocyte antibodies levels, the main treatment option is leukocyte immunization therapy (LIT), which increases these levels through the injection of white blood cells (provided either by your partner or by a donor) so as to increase the number of antibodies in your bloodstream. This will usually help to increase levels so that pregnancy can be maintained.


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## Jofie (Aug 7, 2008)

Lalaby - congratulations! Two heartbeats, how fantastic    BTW I don't think you meant me about the 10 days post 4-day transfer, I'm doing IUI this cycle  

Sprinkles - sorry to hear you're not feeling optimistic. Hang in there.    

Welcome Zeka. 

niccad and newday - hope you're both doing OK on your 2ww. 

Saffa - I'm glad I did LIT like Cozy. My B cells increased from practically nothing to over 90 (these are more important than the T cells according to Dr T and Dr G). Sometimes wish I hadn't wasted so much money on Humira, which did nothing for me, though if I hadn't done it, it would feel like I hadn't dotted all the 'i's and crossed all the 't's - but that's just me. We all have to decide for ourselves how far down this road to go. 

As for me - having the most nerve-wracking day. I am due to go in for my IUI tomorrow at 11am, 39 hours post-trigger shot. Which would be fine, except this morning I also got a positive OTK which in theory means I could ovulate earlier. If I do ovulate in the middle of the night, 11am for the IUI will be too late. I tried to speak to DrG this morning and again this afternoon, but today of all days he isn't returning my calls. Too late to bring the IUI forward now, so just sitting here willing the time to pass quickly and wondering whether or not to have  tonight. Argh. This uncertainty is whole other kind of stress compared to IVF!

Hi to everybody else.


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## lalaby123 (Sep 21, 2008)

Sorry jofie that was meant for Niccad 
good luck with the timing of your iui I know dr g will ne free after 4.30 today so maybe call him then 
xxxx


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## Newday (Apr 27, 2005)

Sprinkles what day you on? I had symptoms Tuesd all had gone Wed that was day 8 and 9
Dwn

when  is test day?

dawn


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## ells (Mar 19, 2008)

Evening ladies, 

How fantastic Lalaby!    I am so excited for you. I bet Dr G will be really pleased for you too.  


Sprinkles, hunni dont give up yet.  Sending you lots and lots of         

Saffa, we have the option of having LIT or not having LIT but we have decided to throw everything at this next go.  I dont want to be in a position where I am left thinking should I have done it, would have made a difference.  We are not going to Athens as logistically we just cant do it so going to book with PA.  You have to do whats right for you though hun, hope you get to making a decision soon.    

Hope everyone else is okay.  I need to phone Dr G as I need to get this hysteroscopy booked in and I would like to chase up our cheque as its been 6 weeks since BUPA paid it!

Gotta dash as fish and chipies have arrived!!

Ells


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## Sprinkles (Nov 6, 2008)

Hi Newday

Am on day 7 after day 3 transfer, and test date isnt until 8th December, nhs clinic make us wait 17/18 days, which I know I can test before but never seem to want to, delays the inevitable.

You're on day 11 right? fingers crossed everything turns round for you.

Jofie good luck with IUI honey x

Oh Ells fish and chips mmmmmmmmmmm


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## Cozy (Jul 17, 2008)

Hey Sprinkles... where's the PMA ??  Think positive girlie...

There is no way I could wait until day 17. I'd be climbing the walls. I get to day 10 and have to test  

I have everything crossed for you       

Cozy


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## lalaby123 (Sep 21, 2008)

Well my happy day didn't last very long....I spoke to dr Gorgy and unlike my clinic who didn't seem concerned about the pool of blood next to the sacs he seemed concerned and he said that is what we r trying to control with immune treatment and that we expect it there in people with immune issues but we don't want it there....so basically he made me realise danger is still just round the corner and not to get too excited...he wants me to stop aspirin and clexane and hav another scan next week and intralipid asap ....he charged me another 90 for the conversation which I didn'tjnd at all as I felt he really cared and his cautious treatment is what is hopefully going to save the pregnancy....


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## Trueblood (Aug 31, 2009)

endo biopsy results faxed today:

1. late secretoryendometriom POD 10-11
2. 0-1 CD57+ Cells indentified/high power field
3. 3-6 FOXP3+ Cells indentified/high power field
4. no evidence of inflammatory change seen
5. no evidence of necrocis
6. no envidence of hypersplasia or atypia

Any ideas what any of this means as Mr Gorgy was busy to day and wants me to call on monday after 3.30

Thanks


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## lalaby123 (Sep 21, 2008)

Trueblood I think u r ok no need for treatment for cd 57 as 0-1 is low but best to check with dr g good luck xxx


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## Diane72 (Oct 29, 2007)

Lalaby sending you  

Trublood, sorry never had the uterine biopsy so not sure

Hugs to everyone else  

Dx


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## lalaby123 (Sep 21, 2008)

Thanks Diane I feel like there is big bad wolf waiting to snatch my little babies      
I hope u r ok and taking care of yourself


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## bluprimrose (Sep 1, 2009)

lalaby, what wonderful news about your two little heartbeats - i know it's a frightening and fragile time and i'm sending you lots of hugs and hope all is well.

hello to everyone else... hope you're all good and getting the answers you need.

afm, am on day 3 of stims (yikes!) and finally got sorted with my worries about my clexane dose - thank you so much to everyone who gave me advice.  i ended up speaking to a consultant haematologist (dr g's suggestion) who explained everything to me clearly and put my mind at rest.  i think we all want our bfp so much that we're sometimes (well me anyway!) willing to take all these extra drugs without always understanding the risks - and there are risks.  i feel that now i understand the risks and am taking extra precautions to minimise them.

diane, if you're there hello, and i hope that you're doing ok and gearing up for 2010.

lol to everyone

bpxx


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## Saffa77 (Feb 6, 2008)

lalaby hope your beanies hang in there!!! take it easy.  Why did you have to stop clexane and aspirin?

Well Dr Gorgy phoned me last night as DP's results for DQ alpha LAD was missing..... anyways they not missing just took longer?!  and he was getting them yesterday but to phone back on Monday to discuss all my other questions etc.  I asked him if i needed LIT and he was like well he would like to see the numbers over 50% but mine are 39.6% and they borderline normal so he said it would be up to me if I want LIT or not so I asked him if I could maybe get away with it this cycle as dont feel im in danger zone and he is like ok and if I get BFP then I can go have a LIT then - PHEw what do you ladies think?  He says seeing as I never been pregnant they are lower then normal anyways am I right now quite sure how that works though?  I was just worried for time etc as going on hols soon in like 9 days then back and start cycle in Portugal straight afterwards....


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## Louiseb26 (May 13, 2009)

Hiya Ladies  

Lalaby - Just saw your post on the twinies.Thats just wonderful news   I'm so excited for you.Sending you loads of  loads of love.I   everything is OK  

I'm off on Monday to get my results...so I'm sure i will be back with loads of questions  

Thank you to everyone who has helped answer my questions...where would we be without you.

Have a nice weekend.

Lou xx


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## Cozy (Jul 17, 2008)

Saffa,

If Dr G says you dont have to have LIT at the moment and if you dont want it, then dont have it done. Like he says you can have it when you get your BFP if you want. 

One less thing to try to fit in before your cycle

Cozy


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## siheilwli (Jan 18, 2006)

Hi girls, I'm in such a flap at the moment with arranging LIT in Athens for Tuesday, I forgot to ask Gorgy some basics...

when do you start taking clexane? (I've started stimming yesterday, and on baby aspirin for ages)
also, when does he start you on pred?


Cat
x


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## lalaby123 (Sep 21, 2008)

Dr g just wanted to be safe as there is som bleeding around the sacs  he thought best to stop the aspirin and clexane until the next scan and if the hematoma has shrunk then go back on them.....I am really terrified and fear that it's all going to be taken away from me soon   

Bp thanks and glad u got your clexane sorted   

Saffa thanks and glad u can skip LIT for now   one less worry 

Thanks Louise  

siheili dr g usually says start clexane and pred on day 5 of stimms good luck


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## siheilwli (Jan 18, 2006)

Lalaby   hope that sac shrinks for you. Take it easy.

thanks for the info
Cat
x


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## mag108 (Jun 28, 2008)

Just bobbed on to say hi.
Saff, Cozy, Niccad, Jofie, sprinkles (fingers crossed for you too!), newday (fingers crossed), ells, bluprimrose and everyone elsexxxx

Lalaby: sending you lots and lots of       , it's so very very hard not to worry...be kind to yourself. You are doing everything you can and in very very good hands.


Been a busy week.
Hey the sky is blue today so may yet get out and get some vitamin D!

Having a lazy day. Bit emotional. PMT + Parents house goes through on Friday.Upsetting because it's another page turned in a sad story. I'd love to go back and say one last goodbye to that house with all its cosy memories but then it will be mixed and emotional and tiring.. But I have a strong sense of them there. Anyway I have decided not to go back, I have Dr G and a double internal (uNK cells and salinogram?)  Thurs in London and I need to be well and not tired for that. Going alone.


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## lalaby123 (Sep 21, 2008)

Mags thanks   and good luck with that double internal u brave girl!! Take some strong nurofen beforehand xxx


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## berry55 (Sep 4, 2008)

Hi girls,

Not been on here in  a wee while as my head has been all over the place   

I made my appointment with Dr Gorgy, its on the 14th of december, so i wanted to say thank you for all the advice you girls gave me as i would not have been able to do it cos i have not got a clue!!!! I live in edinburgh so i need to get the train down to london and stay overnight, DH said we can stay 2 nights  just for some fun... so thats good! I was wondering if any1 would b able to tell me any good hotels that r close to Dr Gorgy... walking distance.... and not too expensive. I need to book soon cos i know london is very very bust at this time of year.  

Thank so so much for all the advice, and if any1 has any more tips... let me know. 

Berry xxxxx

Oh and i forgot to say, my GP did all the level 1 tests so i'm waiting on them coming back too. xxxx


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## bluprimrose (Sep 1, 2009)

good luck berry!

the holiday inn regents park - 5 mins walk:

http://www.ichotelsgroup.com/h/d/hi/1/en/home (carbuton street w1 tel 0871 942 9111)

and the white house hotel about ten mins walk:

http://www.melia-whitehouse.com/en/melia-white-house.html?cid=BUS002:I92:MWH&gclid=CIHBycD6rZ4CFRCY2AodPgjKlQ

bpxx


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## FJ (Aug 9, 2008)

Hi sorry to be a pain but got the blood test results today the hilighted areas are:
NK Assay
50:1 23.5
igGconc 12.5 50:1 13.9%
igGconc 6.25 50:1 11.1%
CD19CD5 10.5%
Intralipid 50:1 9.3%

DQ Alpha 0102 0505 and 0201 0501

LAD Negative 

MTHFR positivew heterozygous

I am assuming this is bad news and am scared about treatment can anyone help with interpretation can't seem to do it in bok and internet.

Thanks


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## lalaby123 (Sep 21, 2008)

FJ 

Your nk killing activity is high should be under 15 good news is it comes down with both ivig and intralipid and it looks like intralipid works better for you although u may still need som ivig as has more benefits....this is what could hav prevented pregnancy in the past so u should be happy to hav found out  

Your LAD levels aren't listed? Need to be over 30 pref 50  

Your TH1:th2 ratio isn't listed. tnf-alpha Need to be under 30  

he will prescribe som drugs alongside ivig/intralipid


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## FJ (Aug 9, 2008)

Thankyou very much for your help
LAD is very low: 1.7 t cell igm 1.0 t cells igg b cells igm 15 b cells igg 18.1


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## berry55 (Sep 4, 2008)

Just wanted to let u know i have booked up for london now... i booked the radisson @ oxford circus. Thanks for all your help girls, i really appreciate it.  

Just wnated to ask u all about IVGI as i really dont want to have this done. My clinic have told me they will not let me have tx if i have this done too. Does Dr gorgy recommend it a lot 

Berry xxxx


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## Saffa77 (Feb 6, 2008)

Hi berry

I remembery you from chat the other evening!  Glad you made an appointment with Dr Gorgy - with IVIG I really scared of that one too!!! When you get your results you will be able to see which one works best for you IVIg or Intralipids - I was lucky that intralipids works best for me..... once you get all your results back and you understand them all better it will all make better sense to you.

All the best and let us know when you know your results.

Sx


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## deegirl (Jan 17, 2009)

Berry

I too have an appointment with Dr G on 14th Dec in the morning!!  Maybe see you there?  This time I'll be going alone though   as I'm travelling from NI and want to cut costs and save DH holiday leave!!  It's very easy to find and central.  

Do your research on IVIG if you're concerned but as far as I know there are no major risks as although it's a blood product it's highly screened to avoid passing on infectious diseases.  You're clinic need not know that you are on it (if Dr G says you will need it).  

Dee


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## lalaby123 (Sep 21, 2008)

Berry ivig is the most effective treatment for immune issues and dr Gorgy does favour it to intralipid and usually alternates .... it sounds scary at first but There is nothing scary about it other than the cost..... It is like a saline drip and has very few side effects if your clinic don't believe in immune treatment it's best not to tell them ....good luck with your appointment 

Fj dr g will recommend LIT with low LAD levels 

Sprinkles hope u r hanging in there and staying       thinking of u 

Nix, hope u r ok and looking after yourself xxx

pinpin ?? No news from you hope all is well xxx

cozy hope ur well and getting ready for your cycle 

Love to everyone else xxx


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## berry55 (Sep 4, 2008)

Do u girls think it is silly of me to go for these tests if i dont want to do ivgi? I really am scared and i know that its prob safe, but i just dont like it and i am not confortable with it at all. For what reasons whould IVGI be needed? Is it good that i have been getting 'pregnant' or does it not make a diff?? 

Thanks for the help xxxx

deegirl- my appointment is @ 12pm.... so prob wont see u. I have DH coming just incase he need tests done too. xxx


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## berry55 (Sep 4, 2008)

Oh and how long does the tests take to come back?? Will i get them sent to me in the post or will i have to go bk 2 london for them??

xxxx


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## deegirl (Jan 17, 2009)

Berry
Mine is at 11 so I'll probably be coming out when you are going in!!  Yes your DH will probably need tested if you are going to go for the whole range of tests.  Dr G may tell you that the fact that you are getting pregnant but not staying pregnant could be an indicator of immune issues.  Having said that you are very young, if I were in your shoes I'd probably try naturally for another few years but it's a very personal choice.  The tests take about 2 weeks to come back.

Dee


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## blueytoo (Oct 5, 2003)

Berry - Dr Sher in the USA who is more of an immunes expert than Dr G and has been doing this immune stuff for many more years, has completely stopped IViG now and only does intralipids. His success rates with IViG in immune patients were close to 85/90% and so far after (I think) 18 months/2 years of just using intralipids his rates haven't fallen at all and I think in fact, have gone up closer to 95%. He also sees a lot more patients than Dr G so there is more research there too.

IViG only brings my NKC down to 18% which isn't in the safe zone, so whilst I am getting Dr G to repeat the assay, if it shows intralipids brings it down further, I am not having IViG at all, even though I take it from this thread that he will insist on both. In fact I am considering just having intralipids anyway as I really trust Dr Sher, he is a complete expert in the stuff and has been doing immune tx for 20 years ish. 

Dr Sher closely follows the Dr Beer protocol and I believe that Dr Beer's clinic has also dropped IViG. 

I have had IViG twice and it did make me feel a bit icky but any side effect go overnight I found.

Claire xx


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## lalaby123 (Sep 21, 2008)

Berry I'd say let's see what your test results com back with...will u hav your level 1 back before seeing dr g? It could be that u hav a simple clotting disorder that can be easily fixed as for level 2s u may not need ivig if your NKs r normal or if they r high u may respond well to intralipid so u can opt for that instead of ivig If it works better for u (in my case ivig works better sadly!)...just take it step by step results take 10 days and u can hav it faxed or posted to u and then hav a phone consultation to review them....I like u get pregnant but my body was rejecting the pregnancy immediately every month because of high NK activity and minor clotting disorder I am sure dr g treatment is the reason I hav so far maintained this pregnancy but who knows if we will win the battle....


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## Diane72 (Oct 29, 2007)

Berry,

I'm going to be harsh as I wish someone had been with me early on. 'Getting pregnant' means nothing, I 'get pregnant' every time I have treatment and actually if I had had a mix of BFNs with BFPs I'd probably be feeling more hopeful of future success than 5 successive  miscarriages. Its being able to hold a child in your arms that counts, 100 pregnancies followed by 100 miscarriages still amounts to nothing.

You do have age on your side which means if issues are identified and you really feel uncomfortable with IVIG you could just try intralipids with high dose steroids and a moderate dose of clexane (40mg). As Feisty says SIRM are moving to intralipids alone as have CARE.

You may be young but you have had 2 chemical pregnancies and a miscarriage, so I think its likely you while find something but only the tests will tell. I personally would say do the tests and then cross the bridge of what and how you need to treat next. You can do your follow up consultation by phone.

Re: your clinic just don't tell them


Diane x


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## Donkey (Nov 24, 2007)

Morning

lalaby congratulations on twin sacs although I know this is a very difficult time    

Berry I agree with Diane, I know this is scary and takes time to sink in, but get all the information and then you can think about how to deal with it.  You DO have time to take it slowly.  |Good luck  

Can I ask a question...  why do people get so concerned about sore throats / colds etc after ET.  I don't mean the normal concern of not being well, but related to the immune issues.  How can we deal with it?

Have a lovely day and don;t get too wet
donkey xxxxxxxx


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## berry55 (Sep 4, 2008)

Thanks girls for the advice. I'm gonna try chill a bit cos i'm really freaking out about it all. I dont not want to tell my clinic as they r fine with the immune stuff, just not IVGI (like me) what is intralipids anyway?? I really need to buy Dr Beers book!! I think i'll buy it 2morrow. 

lalaby- i dont get my level 1 tests bk till i get home from london. I just wanted to get everything checked out at the 1 time so i can get it out my head (if everything is ok)  xx

Diane- thanks for being honest. I feel like i need staright talkin  what did ur tests come bk as and what tx did u do?? 

Deegirl- Ohh yeah i'll prob see u! I am very small, got dark hair and got a scottish accent!  We cant ttc naturally as DH has got poor sperm count which is why we were having in the 1st place. We have been ttc for 3 years now xxx


Donkey-  I was wondering about ur qn too. when i got the furthest on i have ever been after tx which was a mmc (found out at 7 week scan) i had a terrible cold/flu on my 2ww. (i thought that maybe i did 'get preg' cos my immune system was so low 'cos of the cold/flu... is that just silly??) oh and i always have cold hands and feet is that something to worry about?? xxxx

xxxxxxxxxxxx


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## lalaby123 (Sep 21, 2008)

Thanks Donkey   - I guess the fear about flu like symptoms after ET is you think its your immune system launching an attack but its not always the case.....same with cold sores etc I was worried that its going to raise my NK activity or something but i was proven wrong as I have had recurrent episodes since ET but managed to get the BFP

Re Ivig/ Intralipid can I set a few facts straight for the newbies

Dr Gs tests  tells you which one works better for you. This to me is invaluable. I would not want to have cheap intralipids vs expensive IVIG when it wasn't doing enough for me. 

Dr G doesn't insist on having both. He gives you his recommendations and then its up to you to decide. But he does like using Ivig as it has more benefits than intralipid. It has a more 'balancing' effect. For eg I have some NK's which are below range but my NK activity is too high and ivig is meant to balance it all out. If you do better with intralipid he is more than happy to give it to you instead of Ivig. In fact everytime I am down there most girls are hooked up to intralipid. 

I also think that Dr  Beers clinic ARE still using IVIG as they believe there is more evidence and research on it - Jane Reed on the yahoo immune group can confirm this

Dr G follows the Beer protocol very closely and offers the FULL range of treatments which you don't get elsewhere like ARGC or Care. He is the only one stop shop in the UK. From what I know Dr Sher does not follow it exactly. He does not do Humira or LAD and he does not test to see if Ivig works better or intralipid.

My advice to all the newbies is to not be overwhelmed by it all and just take things a step at a time and you will soon see that its not all that bad and quite simple really.


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## berry55 (Sep 4, 2008)

Lalaby- thanks for that... i feel a bit better now   xxxxx


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## bankie (Dec 27, 2007)

Hi all,

A quick update from me - I went for my first progress scan yesterday (5 days into stimming) and I already have a couple of follies at 16mm and 17mm.  I always stim quite quickly, but was hoping that it wouldn't be this early, as they are already talking about EC on Wednesday by which time realistically I may only have 4 follies ready.  I have about 10 in total, but 5 or 6 of them are still tiddlers.   

Anyway, I'm going for another scan tomorrow and then probably IVIG with Dr G tomorrow at 2pm.  I can't remember if any of you will be at Dr G's tomorrow, but if you are then look out for me - I'm 5'6" with brown shoulder length hair.

Lalaby - I'm sorry that you're having such a stressful time hun, but at least it is good news that the problem was spotted early so that you and the doctors can do everything possible to keep your two embies safe.

BP - How are getting on with stimming, have you had a scan yet?  Also, I'd be interested to know what precautions you were told to take with clexane, as I'm also on 40mg at the moment.

 to you all.

bankie


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## super9 (Aug 5, 2008)

Ladies I have just come across an article from Dr Mercola on the Swine Flu vaccine. Please see link attached.

http://articles.mercola.com/sites/articles/archive/2009/11/28/Shocking-Swine-Flu-Vaccine-Miscarriage-Stories.aspx


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## siheilwli (Jan 18, 2006)

Can I ask who Dr Mercola is? This article mentions blog posts, but doesn't  quote firm facts and figures.


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## lalaby123 (Sep 21, 2008)

Bankie I was like u so could only stim for 6 days ended up with 6 eggs out of 15 follies so I was disapponted but maybe quality is better than quantity so don't worry if u get few eggs Good luck!!!!

Hmmm swine flu jab....
I've been advised to get the swine flu jab but due to lack of trials I am reluctant ....


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## Newday (Apr 27, 2005)

well it looks liek it's BFN again for me .
Strange though yesterday af was due I had cramps Friday night and yesterday morning went and lay down slept for 3 hours and I had a show of pink on toilet paper. No af arrived no cramping after yesterday lunchtime. 

Does anyone think it would be too late day 12 past tranfer for implantation bleed or am I just clutching at strwas

dawn


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## mag108 (Jun 28, 2008)

newday: It sounds a little soon? Are you getting a hcg done? When is your OTD?
xTake care


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## Newday (Apr 27, 2005)

OTD is tomorrow defo not too soon
day 12 past transfer
dawn


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## Saffa77 (Feb 6, 2008)

Newday -    hope its not really a BFN.

Ladies with regards to taking these meds especially clexane what worries me the most is not being monitored!!  I am not going to be telling my Portuguese doctor as i mentioned to you ladies before,  and am worried what if something happens as my GP has told me that 60mg clexane is quite a strong dose??!  should I worry?  Also with steroids we have to wean ourselves off them how do you know when to wean yourself off?  Dr Gorgy never told me about weaning off.  This is what is worrying me again is the not knowing.... if there wasnt you ladies how would one know

Thanks ladies


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## berry55 (Sep 4, 2008)

saffa - i was on 20mg of prednisolone on my last tx and i was just told to stop talking them. I was ok... dunno if thats cos it was a low dose. xxx


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## Saffa77 (Feb 6, 2008)

Thanks Berry but that is because you got a BFN am i right what happens when you get a BFP and have to wean off them Im wondering?  I will be on 25mg prednisolne.  

Sx


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## berry55 (Sep 4, 2008)

saffa - yeah i think so. I got a positive test but it was a low positive so it was a chemical preg. I was told to stop taking them. I'm sure if ur on them for a long period of time u will drop the dosage down a little at a time. xxx


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## blueytoo (Oct 5, 2003)

Berry - as others have said wait for your results to come back and then you can decide. I was really worried about taking IViG, due to to it being a blood product but intralipids were not available in this country in 2006/2007 when I had my last rounds of tx. 

As I said, you don't have to have IViG even if Dr G recommends it. Dr Sher's success rates are far greater than Dr G and is a lot more experienced and if Care are following him with no IViG then I think that also speaks volumes. He also doesn't do LIT as was pointed out but in all honesty there is good reason for this. Then again Dr G does not offer the full tests or treatment to single women/women using donor sperm either whereas Dr Sher does. He will do the DQ Alpha tests and get the donor tested and then find you donor sperm that doesn't match. Dr G won't do this or LAD for those two groups of women.

Basically, I would advise to never take everything at face value that you are told and do your own research once you have your results. Dr Sher has a fabulous website with loads of info and a message board where you can post questions and the doctors themselves reply. America is way ahead of the UK in the immune game so following what is done there at the best clinics is always a good idea. I've been having immune treatment since 2006 so have 3 years experience of it now and have carried on researching the latest developments the whole time.

Lalaby - I really hope the bleeding resolves itself and all is ok   , how fantastic that you got pregnant on your first tx as well   I am keeping everything crossed for you.

Newday - I will keep everything crossed for you - pink is good, bright red is not.


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## lalaby123 (Sep 21, 2008)

Dawn it ain't over till AF shows up properly and it hasn't so there is definitely hope still keeping fingers crossed for you        

Saffa u need to just take things one step at a time and get instructions for that stage I was like u and wanted to know 10 steps ahead but it doesn't work that way... I can't advise re clexane but if dr g has prescribed u that dosage then there must be a reason remember u r only taking it for a cycle unless u get a BFP then u hav to take it longer 
re prednisolone if u get a BFP u carry on till 12 weeks then I'm sure he will tell u to wean off by 5 mg every 2 days ....I agree though this thread is a huge support for dr Gorgy we are his parttime nurses!!!


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## berry55 (Sep 4, 2008)

feistyblue- thank you so much for ur post. Dr sher, where is he based? I went with dr G cos i wanna have tx with my clinic in Glasgow as i really like them. I know Dr G will do immunes and let u have tx with ur own clinic.  So Dr G does not do LIT? whats that??  i have heard a few ppl talk about this. So for example if  my results come bk that Dr G would say IVIG is what i should do and i say 2 him i dont want 2 do that would he let me try the intralipids?? 

xxx


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## berry55 (Sep 4, 2008)

I found in some of my old medical records some blood tests i had done befor i was ttc (i had a heath check done @ BUPA) and it has Blood cell tests.. would u b able to tell anything from these? (red blood cells, haematocrit, while blood cells, platetas) Just thought i would ask if any1 knew 

Thanks xxxxxxxx


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## Diane72 (Oct 29, 2007)

Saffa, for prednisolone my clinics advised dropping it by 5mg every 2-3days when stopping it after m/c

Newday, I would test again tomorrow-get an HCG blood test done if you want a definitive answer

Bankie good luck!

Berry, I have raised NKs and 'borderline' LAD, I had 1xLIT, 1xIVIG and intralipids (x3) this last round and felt fine on it all. As I started with CARE rather than Gorgy I didn't have the test to check if I respond better to intralipids or IVIG, so I wanted to ensure I was as comprehensive as possible. I did have my NKs tested at the point of HCG drop (with CARE) and they were all in the 'normal range' so the treatment seems to have addressed the NKs but immunes are not the be all and end all. My borderline LAD was not increased by Armstrong's method (I haven't seen the actual figures yet, I'll get those from Dr. Gorgy on Tuesday). There are many factors in the womb, egg or sperm that could be causing miscarriage but all we can do is test and address them as best we can to move forward. I don't think your blood cell counts tell you much about your NKs etc. but do take them with you to your appoinment anyway.

Hugs to everyone else  

Diane


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## berry55 (Sep 4, 2008)

Diane - thanks hun   xxxx


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## blueytoo (Oct 5, 2003)

Berry - sorry I meant Dr G doesn't offer LAD or DQ alpha testing (and therefore LIT/Humira etc) to single women like myself or anyone using donor sperm. Dr Sher does not believe in LIT/Humira at all because the drugs aren't licensed at all in the USA, and as I mentioned his immune success rates are the highest.

Dr Armstrong will also prescribe intralipids/IViG and any other immune drugs you need, he is based at the Portland I believe. My plan is just to see Dr G to get the testing done (some I am having re-done and some will new for me) and I will then decide what to do myself based on the results and which drugs I am willing to take. LIT is basically taking blood from your DH/a donor and having it injected into yourself.

If you really don't want IViG (and you won't be the first person to refuse this - I've seen lots of posts on here saying the same over the last few years) and Dr G won't prescribe you intralipids you can just go and see Dr Armstrong at the Portland and he will write the prescription. I am sure Dr G will be ok with it though, you might have to be firm with him as to your wishes.

I've just found another UK fertility site and there are lots and lots of women on there who just had intralipids and every single one of them seem to be pregnant now (I stopped counting at 20 odd) many of them had failures previously with IViG.

You may not even have any NKC issues which would be great.

Good luck!  

Claire xx


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## Diane72 (Oct 29, 2007)

Just to 'keep it real' I had 3 x intralipids this round and still miscarried so nothing guarantees a continued pregnancy although it can work for some

D


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## blueytoo (Oct 5, 2003)

Oh absolutely Diane, I had steroids/clexane/asprin and miscarried and IViG/steroids/clexane/asprin and BFNs.

I only mentioned the other forum as on here most posters have just had IViG or both, but on that forum the thread I looked at was intralipids only and a lot more of them.

Getting pregnant is only half the race. I've had bio-chems as well as BFN's and a miscarriage. Other people on here have refused all immune tx too. So many options, it's a personal choice.


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## berry55 (Sep 4, 2008)

Feistyblue- Thank you very much for the info, its all starting to make sense to me now. Its so scary @ 1st... i have so so much going through my head. Lets just hope i have a little problem so it gets 'fixed' and then thats that..... wishful thinking eh? lol Thanks again   xxxxx

Diane - Thanks for 'keeping it real' (You made me laugh when u wrote that!i thought of Ali G movie! lol ) But seriously, thank you   xxxxx


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## bluprimrose (Sep 1, 2009)

hello all

hope you're all well    .

may i just ask - is there any merit in having ivig/intralipids if you have no killer cell problems - as an extra precaution, or is it just useful if you have nk cell problems?  thank you.

bankie - exactly 3 hours after my 3rd 40mg clexane injection i will be having an anti factor x (ten) activity blood test to check that i'm not over-responding and exactly 3 hours after my 3rd 60mg clexane injection i will be having it again - along with a full blood count blood test (i have had one of these recently so have that to check it against, but if i hadn't i would have that taken before i start clexane too.)  any problems and my dose will be dropped.

hope that helps.

bpxx


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## Jofie (Aug 7, 2008)

Hello everybody. Wow - what a lot to catch up on. This is definitely the thread with the best-informed people on it that I've come across!

Just popping in to say, Lalaby, Sprinkles and mag - thanks for the good wishes about the IUI. I had an anxious few days but it all went as planned in the end, apart from DrGorgy arriving LATE which stressed me out considerably. But pretty sure he was right that there was plenty of time and I didn't ovulate early, so that was OK. DP's sample was exceptional - 55 million count and over 95% motility and "all swimming forward" as the very nice nurse put it  . DrG told me to go back up to 60mg clexane after the IUI, so that's my main worry now as I also feel it's a high dose to be on and wonder about the justification. Does anyone know what it says in Dr Beer's book about clexane and dosage? My books are all packed away in boxes at the moment. I feel fine, but people keep telling me I look 'pale'.   

Lalaby - what a nightmare about the haematoma. I'm so sorry - it's the very last thing you need, but as others have said, you're in the best hands and good that it's been picked up so DrG can address it. What an anxious time for you though.   Hope you get good news on the next scan. When will that be?

BP - just saw your post. Thanks for the information. Is the anti-factor 10 and full blood count test something anyone can ask DrG about? I have a full blood count test from a while back I can check against...

Sorry for lack of other personals - quite tired, early night for me.


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## lalaby123 (Sep 21, 2008)

Thanks jofie   and good luck with the next two weeks      

BP no merit with intralipid and not sure re ivig I think it helps if u hav som antibodies such as thyroid etc


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## bluprimrose (Sep 1, 2009)

hi jofie - you are very welcome.

yes, you can ask dr g to give you the blood test forms.  basically i was rather nervous (as you will know if you've read my posts!  ) about the high dose as people have different recommendations/opinions and one consultant told me he thought the risks outweighed the benefits - but i wanted to take the higher dose if it was prescribed to me as long as i felt it was safe.  so i had a chat with dr g about it and said what can i do to check that it's not harming me and he told me about the blood tests - they will show if i'm over-responding.  then i had a long chat with a very helpful consultant haematologist and feel happy about taking the higher does of clexane (have only taken 20mg in the past but will be on 40/60).

hope this helps?

bpxx


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## ells (Mar 19, 2008)

Evening ladies       , 

Boy can you girlies chat!  Its taken me ages to catch up   .  

Lalaby, hunni sending you lots of       , you are in very good hands. Its good that you are going to be closely monitored.  I really hope that things settle down in there.  I have read on some of the diaries on here some similar stories and they have all gone on to have successful pg's, I really   that you will be adding your name to that list.  

Diane, hi hunni, how are you?

Berry,  this business is soooooooo complicated   .  I wouldnt worry about things until you get your results back.  Dr G will help you out and the ladies on this thread will be able to get you on the right track!  

Saff, on the pred, I think the ladies have already said but dont just stop taking them, otherwise you will feel pretty rotten.  You should reduce them by 5mg every 2 days.  I am sure Dr G will be able to tell you once you need to.

Bankie, I hope your follies grow grow grow and you get some nice juicy eggies .  Sending you some growing vibes,           .  

**, have you asked Dr G to do the LAD and DQ Alpha tests for you? I hope that everything works out and your get that BFP!

Cozy, how are you hunni?  

Newday.           .  Dont give up yet hunni, it does sound positive especially as AF hasnt shown her ugly face.  Sending you lots of         for test tomorrow.

Pinpin, hope you are okay     .

Mag, how are you doing hunni?

Jolfie, Hope all is going well and that you are nicely chilled.  Hope your DP's swimmers have their sat navs programmed correctly.  Sending you lots and lots of    

Deegirl, how are you hunni?  My mum is doing really really well.  She has managed to walk about a mile and a bit and is sleeping better.  she has her follow up with the cardiac nurses next Friday.

BP, how are you hunni?  The tests sound like a very good idea, especially as you will be able to see what the clexane is doing .

Cath, Omni and Choice, hope you are all well     .

Hi to everyone else, sorry if I have missed you off the personals  , hope you have all had good weekends.

Well I still havent booked my hysteroscopy   .  I am unsure what to do for the best, because of the issue with getting the money back from Dr G (we still havent had our pennies back and we saw him on the 9th Sept!) I dont know whether to have the scope done locally and just take the results up with me next time we go.  What do you ladies think ?  The alternative, is that I book in with Dr G when we have our week off in 2 weeks time and get him to do it and ask about our refund, as we really need to have the pennies back to help pay for the drugs as I didnt manage to win the lottery this weekend   .  I am waiting for our local clinic to reply to my email about our appointment, I am giving them until Tuesday and then I am going to ring them.  We can start our NHS funded cycle from the 1st December so would like to get going IYKWIM   .  I am seeing my Crohns specialist tomorrow, so am going to speak to him about the humira.  I think i will try and make it look like his idea that way I might convince him to get them to prescribe it    - fingers crossed    .

Right off to make myself some sleepy time tea ummmm sleep......

Ells


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## bluprimrose (Sep 1, 2009)

hello ells

i'm ok thank you.  can feel my follies growing and have my first post-stims scan in the morning.  thing is i have about 16/17 showing but last time 7 were empty so i can't get too excited if i see them growing.

can't believe this time next week i'll probably be going in for ec tomorrow - fingers crossed.

good luck with making your decisions - i think if you can afford to lay out for now i'd getting going as soon as poss as that sounds like what you'd like to do.  it's hard isn't it?  i didn't win the lottery this weekend either unfortunately!  i play twice a week - direct debit!!

bpxx


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## Newday (Apr 27, 2005)

HPT still negative day 14 so guess thats it you can clearly see it has been psotive earlier on in the week and now nothing
Dawn


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## ells (Mar 19, 2008)

Newday     .  I am so sorry hun I was hoping for good news for you sweetie.     .

Ells


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## lalaby123 (Sep 21, 2008)

Newday so sorry to hear this hav u told dr g He may want u to do a blood test to confirm sending u tons of


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## Jofie (Aug 7, 2008)

bluprimrose - thank you so much for the info re. blood testing. That's really helpful . One more question - sorry! Did Dr Gorgy put you in touch with the consultant haematologist? What I'm going to do is wait until the end of this 2ww and, if I get a BFP, check my levels then. I think DrG has had enough of me taking up his valuable time for the time being  .  Sending lots of     for your scan this morning that plenty of those follies are good ones.

newday - so sorry to hear about your BFN.   

ells - good luck getting the humira. Not sure what to advise re. hysteroscopy. I have ot have one soon too but not under such pressure of time as you - also don't have insurance so definitely waiting for the NHS on that one. I must say though, my gut instinct would be to get DrG to do it as a report will probably not give him as good information as actually carrying out the procedure himself. Hope you get the money soon. 

Hi to everyone else.


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## Saffa77 (Feb 6, 2008)

Bluprimrose - thank you for the info regarding clexane etc.  I feel exactly the same as you and am worried about my 60mg dose.  I understand what it is for but am so concerned I am not being monitored!!! These meds are strong and nothing to play around with and just the thought of taking them and not know what it is doing to me and if its over responding or under responding I dont know!  THe thing is I am going to be overseas after I start Clexane should I speak to Dr Gorgy about my concern too and wanting a test done?  Dont know how ladies can take it without being monitored??  Especially when you not cycling with Dr Gorgy.  

As you know I am not going to take LIT - dont think my levels are severe and also reading some posts here about Dr Sher and not using LIT and has high success rates has put my mind up even better thanks for that info ladies.  If I get a BFN will retest again and will see what results are then and may consider it next cycle.  

Im not minding the other meds I have to take but am worried about clexane!

Sx


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## lalaby123 (Sep 21, 2008)

Ells I agree that best to do hysterscopy wiht Dr G, perhaps this time say that you want to claim the cost back from Bupa yourself instead of it going to them before they refund you so they need to send you the invoice and you process the claim yourself. Say the wait is too long and you need the money. Glad your mum is better  

Saffa I think if you are worried about the 60mg clexane you should tell Dr G....i think with doses less than that the norm is not to be monitored many clinics now put women on aspiring, clexane and prednisolone without any kind of monitoring. If in doubt better get it answered as otherwise it will worry you.


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## blueytoo (Oct 5, 2003)

Hi girls

A quick question for anyone that has had a pre-auth number with Bupa. From reading this thread and others it seems like Dr G doesn't do the blood tests at his own clinic and sends you somewhere else for them. I'm really annoyed about that because I got a pre-authorisation number from Bupa for the consult and all the blood tests with the FGA but surely if I have to go down the road to a lab they are going to expect me to pay them as they are nothing to do with the FGA?

Dr G doesn't seem able to answer a direct question as I emailed him ages ago and told him I had a pre-auth number and did this mean I wouldn't have to pay him up front and he didn't exactly answer the question.

Why does his clinic not work the same as every other private clinic and hospital in the entire country when it comes to private health care. It's always the case that the clinic/hospital claims from Bupa direct so the patient doesn't have to pay out.

Ugh I am so confused and wondering whether to cancel my appointment now. Does anyone know the answer or could take an educated guess as Dr G just doesn't seem able to answer properly.

Thanks

Claire


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## Saffa77 (Feb 6, 2008)

Feisty - Im in the same boat as you! Had a pre authorisation number but had to pay upfront??  and extra too as was insurance!  All the other doctors, huge operations (laproscopies) I have had that have been over £4000 etc was never paid upfront by me.  That is one of the reasons why we have insurance so we dont have to pay upfront?!  All very very confusing - this is lots of money we talking about here.  

Sx


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## lalaby123 (Sep 21, 2008)

Feisty and others re Bupa- You pay for the blood tests and consult to Dr G so the invoice from him includes everything. Then you go two doors down and get the bloods done at TDL which is London's best blood lab. I have to warn you Dr G does lack system and proper administration as he is a one man band and in the early days of his clinic so if its something you can't live with then it is going to annoy the hell out of you. You have to weight this up against the fact that in the UK he is our best bet. He offers the most comprehensive testing and treatment that I know of. I am pretty sure that the reason for my success with first go is because of his careful protocol. As far as I know ARGC don't start ivig till later and don't do intralipids which is a bummer if you do better with them, Care don't start clexane till you get a BFP and don't follow through till late pregnancy. I think all these small differences is what can make the difference. So I grit my teeth and put up with Dr G's lack of system and poor administration because when it comes down to it he really cares and gives you personalised and cautious care. 

With Bupa many private clinics do work like Dr G specially IVF clinics ie you have to pay them first and then claim it back. It was the same at ARGC and Lister and clinic in Manchester I went to. What you should insist is that you claim it back directly yourself rather than them paying the clinic to then refund you. That is an unnecessary step and will delay things further. Just ask him to get his accountant to send you a proper invoice (takes up to 3 weeks) and then process the claim yourself. I got everything back from mine and am going to put in a new claim and try my luck with ivig!!


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## Cozy (Jul 17, 2008)

HiLadies,

with regards to BUPA, what I did was had the tests and consultation and paid for those myself, then sent the invoice to BUPA -  I then got a refund. I did it that way, because I didnt know I could get BUPA to pay at the time.

For my hysteroscopy, I phoned BUPA and got an authorisation number then had it done. I ended up not having it done with Dr G, but with someone more local, which I was so glad I did.

You could phone BUPA, and get an authorisation number for your blood tests before you go, but you would have to say you are seeing Dr Eskander and not Dr Gorgy. Dr G is not registered with BUPA, but his partner Dr E is.

Cozy


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## blueytoo (Oct 5, 2003)

Saffa - I agree! My family has had Bupa since I was a child, we all of us have had various appointments and operations (including major ones) and never once had to pay up front.

This is no good for me as I need the complete tests and Bupa have specifically told me that I should not pay him at all and that he should follow proceedure and claim direct from them. Arrgghh. I just cannot afford to pay out all that money upfront at the moment and by the time I can the tests wouldn't come back in time for me to get IViG/intralipids at the right point before flying to Reprofit in January.

Right, I think I will just ask him for the assay test which is the one I am most interested in and I don't think it's that expensive, and get my GP to do all the others. I just hope she can do MTHFR, if she can she will I am sure as she also prescribes me IViG. I am on such a tight deadline here as due to stop taking pill at end of December. 

Or I might just get a script for IViG and intralipids and get my GP to do all the other tests and just go by the Dr Beer book/Dr Sher if I am positive for anything else.

Complete nightmare.

Thanks girls

Claire xx


----------



## Cozy (Jul 17, 2008)

Ells,

glad your mum is getting better. Sounds like she can walk further than me   

I found it easier to have my hysteroscopy local and not use Dr G. I'm glad I had it done, it has put my mind at rest and reassures me there is nothing wrong in there. You dont have to have it done with Dr G.

How did you get on with your Crohns man, did you get the Humira? I hope so, it will save you £750 for 2 injections.

Cozy


----------



## Cozy (Jul 17, 2008)

Newday,

sorry to read you got a BFN. I really hoped it would work for you  

Cozy


----------



## ells (Mar 19, 2008)

Hi Ladies,

Thank you for all your replies.  I have bitten the bullett and have booked in to see Dr G on 15th December.  I figured that way I can cahse my pennies up face to face.  Arkville is on the case though, I did tell her that we needed the money back so that we could get the immune drugs.  I tried to get an authorisation number for the scope this morning with BUPA and its really odd, they couldnt find Dr E at the clinic   even though they have my previous consults and bloods on their system.  The woman asked me to get the BUPA provider number for Dr E at the clinic? Very odd.  Still I will phone Arkville and ask for the number.  I will also do what you guys suggest and get the invoice sent to me and I will claim back from BUPA.

Also more news from me, just got the call to sort out our first appointment with the clinic for our next go!!  We are going in on 16th December, need to have some repeat screens done and then we can go from there.  It looks like we will be starting in the new year so that will mean we have had a 7 month break.  I am just waiting on the Doctor to call me back about the immune side of things   they will support it.  They were pretty supportive last time we spoke so fingers crossed.

Claire, I hope you get everything sorted out.  You are right it is a pain with the BUPA but I am glad that we have been able to get it paid for (even thought its taking ages to get the money back).  

Cozy, thank you   .  I am due to see my specialist at 4.30pm fingers and toes crossed for the Humira!!!

Lalaby, how are you feeling hun?

Hi to everyone else, hope you are all okay.   

Ells


----------



## niccad (Apr 28, 2009)

Wow it's been busy here over the weekend. I need to do some serious catching up. 

Newday - I'm so so sorry. Are you going to do a blood test? and any sign of AF? I'm in the same boat as you. Today is 11dp4dt and the sticks are saying negative although no sign of AF and I'm usually really regular (think the gestone is perhaps stopping it). I'm absolutely gutted and am not sure where to go from here as I thought all the immune tx would do the trick. Guess as it was a frozen go perhaps my embies just weren't strong enough ? I went to drG this morning & he managed to see me for 5 mins before I went off for the test. Agreed to repeat my NK and TNaplha tests tomorrow to see what all my levels are now. Calling at 2pm to see if there is any HCG in my blood at all. Praying for a miracle, but also being realistic... I'm gutted.  

xx


----------



## ells (Mar 19, 2008)

Niccard     .  Really hope you have some good news hunni. 

Ells


----------



## Pinpin (Nov 4, 2008)

Hello everyone,

You girls have been busy chatting   !

Firstly Nic - my thoughts and   are with you fro some good news in the next half hour  

Lalaby - so glad that you have 2 beanies in there, you must so relieved to know they are both well. how are you feeling?

Saffa - I think Lalaby said it well, take it one step at a time as it is worying enough as it is without having to start worrying about 2-3 steps ahead  

Ells - good luck getting the humira from your Crohn's Dr today   that would save you a few £££

Feistyblue - good luck with the NK testing with Dr G if you only want to do the testing he will not pressurise you to do anymore, he truely is a wonderful man.

Blueprimrose - i hope those follies are growing nicely   

Newday - so sorry to read your news   just not fair  

Diane - how are you doing? Any news from the surrogacy agency? Are you now registered with them?   

AFM - On saturday i saw Dr G again who did another scan and we saw our little prawn again and it had grown again to 1.58cm which he said was good, he tried to show us the head was down but we couldn't really see the head or feet. He also confirmed that the other sac had definitely collapsed early on and was being absorbed, he's not sure why it happened though.
He also gave me the results of retest of NK assay and they were all within range or some of them quite under appart from CD56 at 14.8 (normal range is up to 12) so he gave me another ivig. I don't know if it was the ivig or the pg but I felt dreadful the whole weekend after that, very weak and nauseous. I'm still taking it one day at a time, wanting time to go quickly and   things to stay right. I am also going back to Dr T in greece again in 2 weeks time for my 3rd lot of LIT in an attempt to get numbers to rise.

Lots of love to all,

Pinpin x


----------



## Pinpin (Nov 4, 2008)

Lalaby - by the way I have read that hemeatomas can resorb themselves so it may just be one of those. The worry never ends does it?   When are you seeing Dr G again?

Pinpin x


----------



## Newday (Apr 27, 2005)

Niccad the only thing I've had is a pink smear on Saturday the day my af was due no other sign of af Negative test this morning day 14 so guess it's a negative
Dawn


----------



## Louiseb26 (May 13, 2009)

Hiya ladies  

Hope everyone is doing OK? I'm trying really hard to catch up with everyone  

I went to see Dr G today,and I'm still trying to get my head round all this immune testing.
Its looks like we are going to go to Athens to have tx there.I see a few ladies on here have been already.I know Dr G sorts the appointment out,but you have to do the rest...ie flights and where to stay.Has anyone got any tips where to stay,and how much you payed for the flights.

Had my TB bloods done this morning,so waiting for results.

I also have to order Humira,which is a box of two...anyone know which is the cheapest place to go at the moment.

Sorry for all the questions.

Lou xx


----------



## Pinpin (Nov 4, 2008)

Hi Louise,

Dr G sorted my LIT appt in greece to as if you have to sort it out yourself it is almostimpossibel to get a hod of Dr Tsagaris who just doesn't reply to emails or phone or texts. The other way to arrange an appt with Dr T is through other girls on who are going there in the next session and I know there is one on 1st dec so might one to ask one of the girls to confirm your appt. there is a thread I am going back to Dr T on 15th dec. See LIT thread below:
http://www.fertilityfriends.co.uk/forum/index.php?topic=95742.915

Re-flights we flew with BA and will again when going back from heathrow leaving at 8am and back around 7-8pm. It is doable in a day but sure other girls on the above thread can recommend hotels if you want to stay overnight

Re-humira I got mine from Fazeley Pharmacy ( you send your prescription and the post the meds to you) for £789 incl postage for a box of 2 injections.

Pinpin x


----------



## Cozy (Jul 17, 2008)

Hi Louise,

I got my humira from Healthcare at Home and I think it was £746.

You can sort your own appts out with Dr Tsagaris, but as Pinpin said, he can be a pain in the   to get hold of and confirm appts. Once that is done its easy to sort out. I have flown from Gatwick and stayed over both times, once at the Melia Athens at the Sofitel at the airport the other time. You can go there and back in a day, but I chose not too.

The LIT thread will provide you with more info if you have a read through that.

Cozy


----------



## lalaby123 (Sep 21, 2008)

Pinpin so glad to hear your little bean is doing so well and grown so much!!! I'm taking things week by week now and hoping the hematoma will absorb itself 

Thanks louise   and good luck with getting yourself organised with the drugs etc


----------



## Louiseb26 (May 13, 2009)

Thanks alot ladies.

Never thought about doing it all in a day...will have a think about that...will save on the pennies.

Dr G did say we could do it here,with Dr Armstrong,but i think its better to go to Athens,as you get tested twice....is that right.
Sorry ladies this is new to me,and I'm slowly trying to get my head round it all  

Lou xx


----------



## Pinpin (Nov 4, 2008)

Louise,
From personal experience my recommendation is to go to Greece without hesitation !! I did my 1st LIT with Armstrong only to find out that my LAD was still negative once I had my BFP therefore had to rush to Greece to have a booster and going back again in 2 weeks time knowing that having LIT sorted at such a late stage is not ideal. I wish I had gone to greece straight away before I started the tx.

Lalaby,
I know what you mean about taking it one step at a time   I pray for the hematoma to absorb itself  

Cozy,
How are you doing?

Love
Pinpin x


----------



## Pinpin (Nov 4, 2008)

Just a quick questions for the pg immunies on the thread (Cath, Lalaby, Omni, Choice).

Have you asked Dr G what he thinks about the swine flu vaccine and whether us pg immunies should take it or not?

i know we had the article on here posted the other day that said don't take it but I have never heard of the source and wondered what you girls and Dr G think about it?

Thanks
Pinpin x


----------



## Cozy (Jul 17, 2008)

Louise, I also would recommend Athens over London 100%. Dr T does 2 lots of LIT 4 weeks apart, you then retest your LAD (with DH) 3-4 weeks later to see if it has worked. He follows Dr Beers protocol and he gets good results. Using donor LIT usually gets the better results.

Pinpin, I'm doing ok thanks. I'm off to Czech Republic on 12th Dec for DEIVF. I just hope all the immune treatment I'm having helps. I hope the LIT helps you. I'm having my LAD retested on Weds to see if it has worked. I hope you are feeling better after your nauseus weekend..

Cozy


----------



## blueytoo (Oct 5, 2003)

Hi everyone

Right, I have an appointment with my GP tomorrow so my plan is to ask her to do:

MTHFR
Factor V Leiden
Lupus Anti-Coagulant Antibodies
Anti-Cardiolipin Antibodies
Anti-Nuclear Antibodies
Anti-Phospholipid Antibodies.

Does anyone have any other suggestions of non-Chicago tests to ask her for? I have had those last 3 done by her before and got a borderline result on them so had Clexane with last 3 cycles. She will do anything she can or find me a hospital lab that will.

I then plan to just ask Dr G to do the NKC assay with intralipids only as have had NKC assay with IViG done in 2007 so know my level is 32 or 38% bought down to 18% with IViG & steroids so effectively IViG no good for me at all as it does not work. He won't do LAD or DQ Alpha for single women so that's fine with me.

Any other thoughts?

Thank you

Claire xx


----------



## Cozy (Jul 17, 2008)

Pinpin,

I have read quite alot of stuff about the swine flu injection and I came to the decision not to have it - even if I got pregnant. 2 people I know who are either in the states having TX now or going next week have both been told by seperate US clinics not to have it.

For some it is a difficult decision to make. There is lots of confliciting evidence and opinions all from people who say they are "experts". I think its a personal choice and there doesnt appear to be any right or wrong.

I havent asked Dr G about it, but I will when I am there on Weds

I personally dont want to put something so controversial like this into my body when there is no evidence to show how it reacts with other drugs, i.e IVIg and Intralipids, especially when my chance of catching it is so slim.

I read one post, which I will copy below, which says taking vitamin D3 is what we should be taking, not having the vaccine. Dont know how accurate this is, it was posted on the swine flu and immunolgy thread. I hope Tutenkahmoun doesnt mind me reposting it...

Hi there,

I got sent an email this morning that was quite disturbing on the swine flu vaccine. This is what it said (below). Also, you can check him out online: http://socioecohistory.wordpress.com/2009/07/15/dr-russell-blaylock-vaccine-may-be-more-dangerous-than-swine-flu/

Health alert from Dr. Russell Blaylock concerning swine flu

Dr. Russell Blaylock
(bio follows this alert)

24/7/09, Russell Blaylock wrote:

No one should take the swine flu vaccine- it is one of the most dangerous vaccines ever devised. It contains an immune adjuvant called squalene
(MF-59) which has been shown to cause severe autoimmune disorders such as MS, rheumatoid arthritis and Lupus. This is the vaccine adjuvant that is strongly linked to the Gulf War syndrome, which killed over 10,000 soldiers and caused a 200% increase in the fatal disease ALS (Lou Gehreg disease). This virus H1N1 kills by causing a "cytokine storm", which means that it cause the body's immune system to overreact and that is why it is killing young people and is a mild disease in the elderly. (The elderly have weakened immune systems.) This vaccine is a very powerful immune stimulator and carries the real possibility of making the lethality of the virus much greater.

One's best protection is vitamin D3. One should take 5000 IU a day now and when the disease begins to spread increase the dose to 15,000 IU a day. Vitamin D3 modulates the immune reaction, reducing the chance of an overreaction and stimulates the body to produce what are called antimicrobial peptides, which are powerful killers of viruses that does not involve immunity. This is dose related, which means the higher the dose of vitamin D3 the better the protection. Fish oils (the best is Carlson's Norwegian lemon flavoured fish oil) also reduce immune overreaction. One teaspoon a day should be sufficient. For severe symptoms, one teaspoon twice a day. Antioxidants of various kinds also help - this includes, quercetin, curcumin, grapeseed extract, vitamin C and natural vitamin E.

A good multivitamin/ mineral such as Extend Core http://www.vrp. com is also essential.

Feel free to spread this around. People need to know how to protect themselves.

Russell

RUSSELL L. BLAYLOCK, M.D.

Dr. Blaylock is a board certified neurosurgeon, author and lecturer. He attended the LSU School of Medicine in New Orleans and completed his general surgical internship and neurosurgical residency at the Medical University of South Carolina in Charleston , South Carolina . During his residency he ran the neurology program for one year and did a fellowship in neurosurgery after his residency. For the past 25 years he has practiced neurosurgery in addition to having a nutritional practice. He recently retired from both practices to devote full time to nutritional studies and research.

During his residency training he worked with the eminent neurosurgeon, Dr. Ludwig Kempe.Together they developed the transcallosal removal of intraventricular tumours, which is still used today. Dr. Blaylock presented their cases utilizing this technique to the Congress of Neurological Surgeons. They also developed the ventriculolymphatic shunt in the treatment of hydrocephalus. In addition, they conducted neuroanatomical studies together with the aim of developing improved approaches in vascular intracranial surgery.

It was during his residency that Dr. Blaylock did much of the primary work on intraventricular monitoring of craniocerebral trauma patients, which was reported in the scientific literature. He also worked closely with Dr. Peter Jannetta during Dr. Jennetta's early research on vascular compression of the cranial nerves as a cause of trigeminal neuralgia and hemifacial spasm. Dr. Blaylock was one of the first neurosurgeons to utilize high-intensity nutritional supplementation in craniocerebral trauma patients, which met with great success.

Dr. Blaylock has written and illustrated three books. The first book was on the subject of excitotoxins (Excitotoxins: The Taste That Kills) and how they are related to diseases of the nervous system. His second book,Health and Nutrition Secrets That Can Save Your Life, covers the common basis of all diseases, nutritional protection against diseases of aging, protection against heavy metal toxicity, the fluoride debate, pesticide and herbicide toxicity, excitotoxin update, the vaccine controversy, protection against heart attacks and strokes and contains a new chapter on omega-3 fats. This book has been newly revised as an oversized paperback. His third book,Natural Strategies for Cancer Patients, was released in April, 2003 and discusses the ways to defeat cancer, enhance the effectiveness of conventional treatments and prevent complications associated with these treatments. In addition, he has written and illustrated three chapters in medical textbooks, written a booklet on nutritional protection against biological terrorism and written and illustrated a booklet on multiple sclerosis. He has written over 30 scientific papers in peer-reviewed journals on a number of subjects.

Since the publication of his first book he has been a guest on numerous national and international syndicated radio programs and appeared on the 700 Club several times. He appeared on Nutritionally Living with Dr. Ward Bond. Presently, he is engaged in a monthly radio program discussing his book,Health and Nutrition Secrets on Raymond Francis' program Beyond Health. The series will run for 12 months. He lectures widely to both lay and professional medical audiences on a variety of nutritional subjects.

Dr. Blaylock serves on the editorial staff of the Journal of the American Nutraceutical Association and is the associate editor of the Journal of American Physicians and Surgeons, official journal of the Association of American Physicians and Surgeons. He has a monthly nutrition newsletter, published by NewsMax.com, The Blaylock Wellness Newsletter.

Dr. Blaylock serves as the medical consultant for the Fluoride Toxicity Research Collaborative. He was recently awarded the Integrity in Science award by the Westin Price Foundation.Presently, he is a visiting professor in the department of biological sciences at Belhaven College in Jackson, Mississippi.

At present he is a member of the American Association of Physicians and Surgeons, the American Nutraceutical Association, the International and American Associations of Clinical Nutritionist, the International Academy of Oral Medicine and Toxicology, American College of Nutrition, American Association for Health Freedom, National Health Federation, American Academy of Anti-Aging Medicine and the Price-Pottenger Nutrition Foundation. He was recently appointed as a member of the Academy of Anti-Aging Medicine and the Price-Pottenger Nutrition Foundation. He was also recently appointed as a member of the Scientific Advisory Panel of the Life-Extension Foundation. 

Its thought provoking....

Cozy


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## lalaby123 (Sep 21, 2008)

Thanks for that cozy 

Pinpin I was taking a wait and see approach I am reluctant to hav it as not been tested on pregnant women haven't asked dr g but should do really


----------



## Louiseb26 (May 13, 2009)

Thanks so much for your replies ladies...your so up on everything  

Do you know when i should order the Humira?  I'm looking to go to Athens in Jan and start the ball rolling from there.

Lou xx


----------



## Han72 (Feb 15, 2007)

Er re the Swine Flu thing, can I just say that Dr wotsits opinions relate to 1 specific type of vaccine, the one with adjuvants or whatever it is they're called. There are others which DO NOT contain this ingredient, also please have a look here:

http://www.fertilityfriends.co.uk/forum/index.php?topic=211291.msg3344387#msg3344387

Love and luck to all!

xxx


----------



## lalaby123 (Sep 21, 2008)

Yes but the one with the adjuvent is the one that is available to most people including pregnant women


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## Cozy (Jul 17, 2008)

Feistyblue,

I would have your NK's tested with IVIg and Intralipids as they may have changed - my NK's with IVIg were 12.1 when they were tested late 2006 and 25.1 when tested this year.

Cozy


----------



## bankie (Dec 27, 2007)

Good evening ladies,

Niccad and Newday - I'm so sorry for your sad news.    

Pinpin - it's great to hear that your little bean is growing nicely, congratulations!  On the subject of the swine flu jab, I had IVIG this afternoon at Dr G's and there was a pg lady there having it at the same time as me.  She and her husband asked Dr G on his opinion on the swine flu jab, and he said that on balance he would recommend having it, as he felt the potential risks if you got swine flu would outweigh the risks of having the jab.  Just thought I'd mention it, although obvisously I'm sure you will want to discuss it yourself with Dr G and do as much research as you can.

AFM - I had another scan today and it looks as if there may be a couple of follies catching up with my 4 front-runners.  I have been booked in for EC on Thursday, and am just      that they will have time to catch up and mature.

 bankie


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## bluprimrose (Sep 1, 2009)

saffa and jofie - have pm-ed you both
bpxx


----------



## bluprimrose (Sep 1, 2009)

a question for all you lovely, very knowledgeable ladies.  have any of you been told that being on 75mg of aspirin during tx - before a bfp can prevent implantation??

thank you in advance.

bankie - good luck with ec - hopefully i won't be far behind you - monday i should think.

re swine flu jab - have avoided reading that cut and paste - i had the jab a few weeks ago as i wanted to get it out the way before tx/hopeful bfp   - and just reading a few words of it scared me too much!

feisty blue - full blood count is helpful i think and can be done at gps.

niccad and newday     .

love to all

bpxx


----------



## berry55 (Sep 4, 2008)

Hi girls  

Hope ur all doing ok. 

As u all know i had my level 1 tests done with my GP, i was wanting to ask u all if i got the right stuff done...


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)

I also got them to do a karyotype test too.

Thanks Berry xxxxxxxxx


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## lalaby123 (Sep 21, 2008)

Berry welldone with tests perfect  

Feisty see berrys list for other tests for your Gp

Bp no not heard that one before if it's any consolation I started baby aspirin a month before my treatment cycle and it obviously didn't prevent implantation...good luck with EC     

Niccad and newday has AF arrived?? I don't want to giv up on you two yet


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## berry55 (Sep 4, 2008)

lalaby - phew!!! xxxx


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## blueytoo (Oct 5, 2003)

bluprimrose said:


> a question for all you lovely, very knowledgeable ladies. have any of you been told that being on 75mg of aspirin during tx - before a bfp can prevent implantation??
> 
> bpxx


Yes that is correct and there is info out there on the web about this as I just read it recently somewhere. I can't help you with links as I've been looking at so much stuff recently but I am sure you will find it and from a very reputable source as it strikes me that I remember it being trustable.

Claire xx


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## blueytoo (Oct 5, 2003)

Cozy said:


> Feistyblue,
> 
> I would have your NK's tested with IVIg and Intralipids as they may have changed - my NK's with IVIg were 12.1 when they were tested late 2006 and 25.1 when tested this year.
> 
> Cozy


Hi Cozy

I will see if it will make a big difference to the cost or not, as I am fairly sure after 7 failed cycles they won't have gone down only up again and IViG still won't work. After all, if I had cycled every year since my last cycle in late 2007, I wouldn't have had them re-done. If they were lower/more borderline I would get them re-done but they are really, really high anyway.

If the tests show that intralipids brings them down to the safe zone, which IViG doesn't do for me then that will be fab and what I am praying for. Read somewhere recently that Dr G and Dr Sher agree that for women who's NKC are as high as mine and don't come down properly with IViG that intralipid is almost guarranteed to work perfectly in bringing them down. So I am very hopeful for that!

Claire xx


----------



## bluprimrose (Sep 1, 2009)

Lalaby, thank you as always.

Anyone else heard this re baby aspirin?

night night for now

bpxx


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## blueytoo (Oct 5, 2003)

lalaby123 said:


> Berry welldone with tests perfect
> 
> Feisty see berrys list for other tests for your Gp


I've seen that list on the immunes board but I need individual tests names as that list is taken from the RFU and the USA way of doing things and names is slightly different so it affects the number and colour of vials etc.

Anyway I think if I add in the Panthrombin gene mutation and anti-mitochondrial antibodies then I have everything as thyroid, FBC etc was all done a few months ago for me.

Claire xx


----------



## blueytoo (Oct 5, 2003)

bluprimrose said:


> Lalaby, thank you as always.
> 
> Anyone else heard this re baby aspirin?
> 
> ...


BP - I may have read it on here somewhere come to think of it! Why not post on the SIRM message board and ask for Dr Sher to answer. He will answer you directly and you can trust his response 100% with immune patient success rates. I think it is fantastic that the doctors at SIRM answer questions on a message board.

Claire xx


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## lalaby123 (Sep 21, 2008)

Feisty I got the same list from Care and took it to my Gp they should be able to work it out good luck xx


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## blueytoo (Oct 5, 2003)

lalaby123 said:


> Feisty I got the same list from Care and took it to my Gp they should be able to work it out good luck xx


Ah ok, that's good to know. The list from the Lister was nicely individually listed which she said was easier for looking up the vial size/colour. Thank you, sorry if my last reply sounded abrupt, didn't mean it to, I was typing fast!

Claire xx


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## Cozy (Jul 17, 2008)

hello ladies,

whats this I read about baby asprin preventing implantation  

If that is the case, then why do so many clinics, including all the ones I have been too, prescribe it?

Also, so many people get pregnant after using asprin as part of their drug regime.

Can anyone point me to a reputable source with evidence that this is the case?

Cozy


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## bluprimrose (Sep 1, 2009)

don't worry cozy - i am taking baby aspirin.  it's just that, as with all the advice i've been given, much of it is conflicting.  most people tell me to take it but one consultant believes it can potentially be harmful as far as implantation goes so advises 150mg per day is taken but only once you get your bfp.  so i just wondered what other people have been told/heard.  i am still taking it though as it looks like evidence is stronger in its favour.

thank you claire re sirm.  i'm sure dr beer is an advocate of it in his book (i will check) and dr sher seems to follow his protocol.

bpxx


----------



## Cozy (Jul 17, 2008)

Hi BP,

Dr Beers book recommends 75mg or 81 mg asprin as "it increases overian responsiveness and produces better implantation and pregnancy rates"... I think I'll go with that.

I have friends who have been to top clinics in the US and UK who have all been prescribed it too.

It does make you think though when there is conflicting info about all this stuff, who are we supposed to believe  

Cozy


----------



## Jofie (Aug 7, 2008)

I spoke to my GP about baby aspirin and she said that it is not recommended unless you have been prescribed it for a specific condition i.e. if you are prone to clotting, in which case the benefits outweigh the evidence from studies that showed lower implantation rates in the baby aspirin group. But I have not read the studies to determine whether of not these studies were carried out on a normal population or on women with recurrent pregnancy loss / implantation failure.  Having read what baby aspirin does (ie stop vascular constriction), I feel comfortable taking it, as I know I am prone to this as well as to clotting. I was not on baby aspirin for my pregnancies that ended in early miscarriage, and I am sure it was a mistake not to have been prescribed it for my first IVF cycle.  

Hope this helps.


----------



## bluprimrose (Sep 1, 2009)

i agree cozy - and thank you for the info jofie.

bpxx


----------



## blueytoo (Oct 5, 2003)

Agree with Jofie that it should only be used if you have a condition that necessitates it. The top clinics here and the US only prescribe it if your tests indicate it. The Lister (which is 2nd best in UK) prescribed it and clexane for me after my APA's came back borderline positive and that cycle was the one I miscarried in. They did not prescribe it before I had the tests and in my other cycles before that.

Am fairly sure Dr Sher and SIRM don't prescribe it without tests showing it is indicated and again they are a top US clinic. Actually I've just read on his site that he does not believe it has any real benefit. So that's good enough for me with his success rates.

Does Dr G prescribe it for everyone then??

Claire xx


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## lalaby123 (Sep 21, 2008)

Not at all feisty I know stress levels are high on this thread due to the complexity of it all hope u get all your tests sorted there isn't much difference in the price for checking ivig vs intralipid response I think so u might as well get it done so dr g can see as well that u don't respond to ivig and fingers crossed u will respond well to intralipid


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## Pinpin (Nov 4, 2008)

Morning all,

thank you for all info re-swine flu vaccination. I think i'd go with what Dr G recommands but will check with him of course.

Re-aspirin just like Lalaby i started taking it about a month before starting the cycle.

Pinpin x


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## niccad (Apr 28, 2009)

Morning - it's a definite BFN for us... HCG was less than 1 yesterday   AF still not here but I guess gestone has delayed it (is this right?). Seeing DrG at 1:30pm today to have my NK tests redone and to talk about next steps. Anyone else in today? DrG said I could just stop the pred without weaning off but I'm a bit worried so am decreasing my 5mg a day.. am i being stupid? Re aspirin - I'm going to carry on taking it for my next go... 

Hi to everyone & sorry again for the me post
Miserable Nic


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## Newday (Apr 27, 2005)

Niccad so sorry it's just not fair is it I would be interested in what he says to you
Dawn


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## bluprimrose (Sep 1, 2009)

Niccad, i'm so sorry.  Yes, i think the progesterone can make af early - or late - as usualm 2 opposites.

I wean mysef off prednisolone by 5mg less a day.

sorry again.

hugs, bpxx


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## ells (Mar 19, 2008)

Niccad     so sorry to read your post hun.  The gestone will delay AF unfortunately, in our last 3 cycles my AF has started when I have stopped the progestorone support.  I hope Dr G can give you some answers today hun    .

Hope everyone else is okay.

Update... well almost there on the humira with my cronhs doc   .  he was a bit worried about prescribing it and wants me to have second opinion with the other doc I have seen before    .  Will let you know how I get on.

Ells


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## lalaby123 (Sep 21, 2008)

Niccad so so so sorry for your BFN     sending you lots of      I hope you can find a way forward with Dr G 

Ells I really  hope you get your humira sorted that will be amazing


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## Saffa77 (Feb 6, 2008)

Niccad so so sorry to read about your bfn!     life can be so unfair sometimes!! Really hope you can get some answers you sort your racing mind out right now!  

Ladies quick question re gestone:  why would one need gestone over cyclogest?  On my last cycle I got prescribed 800mg per day of cyclogest and now Dr Gorgy says gestone - what is the difference between the 2?

Sx


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## blueytoo (Oct 5, 2003)

Niccad - sorry about your BFN   

Saffa - the only reason to prescribe gestone over cyclogest is if you don't absorb the cyclogest. Most people are fine on cyclogest but a very small minority absorb gestone better. My gestone cycle was the one I miscarried on so I went back to cyclogest on my other cycles with my consultants blessing as gestone is not pleasant. So my next cycle we just doubled up the cyclogest. 

Dr G should have a good reason for putting you on gestone, you should ask him. You can be tested easily to see which you absorb better just by having progesterone levels tested. 

Lallaby - I don't find it stressful particularly, I have been dealing with immune tests and treatment for 3 years now. Just annoying when doctors try to impose their will on you when you've done lots of research and when things are done differently by a new doctor to the immune field. That is confusing! I don't need him to see that IViG doesn't work to be honest, when the tests already show that. No point in spending even £1 more than is necessary as having had 8 lots of tx already at huge cost I do need to keep as much for further tx's as who knows how many more cycles it is going to take. 

Ten vials of blood taken at GP, she is a star, some trouble finding the right tests on the computer as they are not supposed to hand write on the envelopes but she couldn't find MTHFR or anti-phospholipids so she had to guess which department (half are going to Immunology and half to haematology) and she took an extra vial to be sure there was enough blood bless her! She did everything on that list though. So that does just leave the intralipid assay for Dr G to do. I will see what these tests throw up first and then decide whether to just go and have my consult and just get him to prescribe intralipids/IVig or whether to have the assay as well. I may consider one IVig & 1 intralipids before I leave for EC and then intralipids if I get a BFP. I will also ask Dr Sher what he thinks as well when I have the bloods back.

Claire xx


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## berry55 (Sep 4, 2008)

Niccad    i'm so sorry hun xxxx


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## Ourturn (Oct 8, 2008)

Niccad - I'm sorry hun  

Lou I was at Dr G's yesteday too at 11.30, in the waiting room until 12.15, with dh, wearing a red coat. 

Our 1st meet with Mr G yesterday and felt a bit flat afterwards to be honest. He was tricky to understand. He said I would definately need humira due to my rasied unk's but the blood tests would tell us whether I would need x4 injections or x2. He was concerned about my allergies and said ivig (if need it) could be a problem, so may just have intraplipids. I asked him what my chances where and he was very non commital. Said I could get pregnant naturally, but that my egg quality could be an issue (he considered an amh of 6.1 to be low even though my nhs clinic still thinks its ok) and that along with immune issues could have caused my miscarriages. Test results will be back in 10 days so will call for them then. Good news is that DH seems to be on board. I asked about AF and he said it might be best to do nothing and buy some time to fit in immunes before my nhs cycle. I think I'm on cd 71 today! 
Guess I just wanted to hear him say 'I can fix things' 

Anna x


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## berry55 (Sep 4, 2008)

Hey girls,

I'm wondering if my health insurance will cover my tests with Dr G?? I'm with aviva heath cover... what u think? And what do i do?   i'm having probelms with every stage... you girls r gonna hate me the the time i get get my results lol! Sorry in advance!   xxxxx


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## Cozy (Jul 17, 2008)

Anna,

I know what you mean, but things will look a little different when you have your test results back. No one can say for any certainty that they can fix things, though I wish they could, but when you know what you are dealing with it is a little easier to try to fix things.

I had 2 lots of Humira for my uNK cells - my levels were 8.3%. He never mentioned to be about having 4 Humira's. I also have raised NK cells in the blood and I am having IVIg and Intralipids for those.

See what your test results come back as and take it from there. Then you can formulate a plan of action

Cozy


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## Cozy (Jul 17, 2008)

Niccad, sorry hun  

Cozy


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## Cozy (Jul 17, 2008)

Berry,

I dont know about your company, but BUPA do.

Give them a ring and see what they say

Cozy


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## Saffa77 (Feb 6, 2008)

Thanks Fiesty - the reason why I was put on GEstone was because my CD56 &CD5 sorry cant remember the numbers  was about 2% over the limit should be up to 10% but mine was like 11.6%,  but on my first Donor Egg cycle when I was on the progesterone just before the ET doctor took my blood for progesterone and says it was fine.  So presuming then I am fine on cyclogest?  Can i just up the dose myself just to be safe so instead of 4 pessaries morning and 4 PM i can do 5 AM and 5 PM?  I am just not keen to have gestone as will be doing all those injections myself.... what do you think?

S


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## berry55 (Sep 4, 2008)

cozy - but what do i say? i'm sure i seen something about bupa wond cover dr G but cover Dr Erskine? so what do i do ? lie? i'm so confused lol


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## Cozy (Jul 17, 2008)

Berry,

just ask if they cover investigations into miscarriages and/or infertility. If you have had 3 miscarriages or a long period of infertility they often cover the tests.

Dr G is not registered with BUPA but Dr Eskander is. You could just say you are going to FGA and there are 2 doctors there and see if any are listed. If one is, say you are going to see that one. Dont give too much away, be economical with the truth about any previous IVF's or tests etc.

Cozy


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## Saffa77 (Feb 6, 2008)

Hi Berry

When you want to claim from insurance let DR G know or even phone the receptionist before hand and try and make and appointment to see Dr Eskander ( who is his partner in the practice)  and what they do is they get you to see him to for about 10 mins so that BUPa can pay - dont know how they do it exactly but it seems to work for some insurances and they pay up - some insurances want nothing to do with fertility and refuse to pay.  Either or you have to pay everything upfront at Dr G's and then either he will claim back for you with the number you give them or you claim it back yourself.  I got them to claim back but havent heard anything so dont know what is happening - my appointment was about 6 weeks ago but when I speak to Dr G with all my questions etc i will ask him then.

Hope this helps.

Sx


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## Ourturn (Oct 8, 2008)

Ladies
Re claiming back, just top let you know we did indeed see Dr Eskander for a few mins too. Had to pay up front £1600!  . They will send us an invoice then we will claim it back from my insurer. 
This is the 1st time I have ever had to pay anything when using private health insurance. Mr Gorgy should definately employ a good office manager to sort things out. The secretary is pretty useless.
Anna x


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## Saffa77 (Feb 6, 2008)

Yeah I agree with Broody1 but its not her fault though I just think they dont tell her how they do things - its almost like its all done behind their closed doors - They definately need an office manager and nurse to sort all these things out.  Why is Dr Gorgy not registered on these insurances too then and also heard he is not registered on the HFEA?  is this correct ?  who does Dr G report his results too etc?

S


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## lalaby123 (Sep 21, 2008)

Dr G is not registered with Bupa because he is IVF specialist more than anything whereas Dr E is a gynaecologist. Dr G is not registered on the HFEA because he does not have his own lab and therefore his results are pooled in with those clinics where he operates from ie LWC and the other one I can't remember the name of. So all his successes which there are many sadly are not reflected against his name but go down as success for LWC and the other clinic. He is planning on building his own lab in the distant future and then he can become HFEA registered and hopefully have a proper set up by then with office manager nurses etc......

Anna hopefully the humira will do the trick for you and yes sadly no promises are made by Dr G but then its better as he doesn't give you false hopes even though sometimes we want to hear it......he was pretty matter of fact with me when i told him about my recent scan and the presence of blood but at least he is cautious and doesn't take things for granted.....good luck with the rest of your tests results xxx


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## berry55 (Sep 4, 2008)

I've not phoned or done anything yet with the health insurance. But i dont think they will cover me as i have only had 1 mc but 2 chemical pregs and they r all when i've had tx. So i have 2 have icsi to get preg due  2 dh sperm count, do u think that would make a diff? If you girls think i should still go ahead with it what should i do 1st? Should i phone FGA and tell them i'm wanting to get health cover 2 pay and see if they can give me an appointment with the other Dr B4 i see dr Gorgy. This is really confusing me now lol sorry for being a pain. xxx


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## lalaby123 (Sep 21, 2008)

Berry - first of all call your insurance company and ask if they pay for investigations into subfertility or miscarriage. If they say yes then ask how their system works ie do you have to fill in a claim form or do you need authorization number etc. If they ask who you'll be seeing say one of the doctors at the FGA and see what they say. Then you can take it from there. With Dr G you just have to pay everything upfront as you do with all other fertility clinics and then claim it back from your insurance.


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## berry55 (Sep 4, 2008)

lalaby- ok, i understand now. Thanks for that xxxxx


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## positivelyhopeful (Jul 22, 2008)

Hi ladies,

I'm hoping you'll be able to help, guide and advise me. I'm new to immunes and am trying to figure out how to get an appt with Dr T in Athens for LIT treatment. Cozy has already given me good advice on the LIT thread but I'm still wondering where to start!!  

I'm being seen by Dr G for my immune issues, should I try to ask him to book my first appt or should I try and get one myself? Also I want to do my 1st LIT in January as I'll be cycling march/April, does anyone know what dates Dr T is doing in January.
Could anyone give me telephone number and email for Dr T so I can try to contact him? and email for Dr G?

Thanks lots ladies

x x


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## lalaby123 (Sep 21, 2008)

Hi 4angels I'm no expert on Lit but I'm sure one of the girls will advise u soon xx


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## Cozy (Jul 17, 2008)

4 angels,

Dr T's email is**  send him an email with your test results on and ask him what his clinic dates are for Jan and tell him to want to book an appt.

Dr G's email is*

Cozy


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## Sprinkles (Nov 6, 2008)

So sorry niccad


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## lalaby123 (Sep 21, 2008)

Sprinkles how r u doing Hun wen is your test date? Has that flu gone?


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## FJ (Aug 9, 2008)

Hi all
Sorry to ask for more advice on my immune test results I am panicking about our DQ Alpha results they are 
Me 0102 and 0505
DH 0201 0501
Been tying to dechpier what it means and it apears to look bad as Dr Gorgy has written in pencil 2.1 4.1 for Dh and 1.2 and 4.1 for me. I am really worried as I think we wil need LIT but I would want to use my DH blood not someone elses and worried we are too closely matched.
Thanks


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## mag108 (Jun 28, 2008)

.......sorry no time tonight
Just popped on tonight to say niccaad, I am so so sorry hun


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## Jofie (Aug 7, 2008)

niccad - so sorry


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## Bettysjourney (Jun 11, 2007)

Dear Niccad

so sorry to hear your news - such a blow for you and DH I know.  Rest up a little and if it helps try to think - its not IF you get pg its WHEN - you will do it you know     
Lots of hugs

Betty xx


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## Saffa77 (Feb 6, 2008)

Ladies

As you know Im positive for Factor V leiden and hetero positive for MHTFR Dr G told me to take folic acid but didnt tell me what dose but at the moment I have started taking 5mg folic acid and Vit B6 - 50mg and Vit B12 1000uig - which i found both at holland and Barratt is this ok  

Sx


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## niccad (Apr 28, 2009)

Thanks for all your messages... I saw DrG again yesterday to have my NK and TNa tests redone (another lovely bill!), but at least I'll know if the immune tx has worked. Guess there was less chance a frozen go would work but I'm still gutted as it was all looking so good, and although I knew the %, etc I secretly really thought it was working  
I tried to talk through doing a full cycle with drG but didn't really get a clear understanding of protocol etc. With other clinics it's all set out on paper with potential dates etc, and although I kept digging I found it really hard to understand. He wants me to start on the pill first for 3 weeks so I can start DR and stimming at the start of Jan, but I had bad side effects to the pill last time (dark blotches on my face) so I'm not keen. I told him this but he didn't really offer a solution. Anyhow - I walked away not feeling so comfortable about doing a full ICSI go with him which is strange as I 100% trust him on immune stuff  . Most other london clinics seem to be closed for ages over Xmas - CRGH closed for 3 weeks (for reburbishment) and Lister for 2 so they wouldn't start me until Feb (by which time LIT benefits may have gone)... so I'm going to the Bridge centre instead. (my NHS clinic uses their lab & I've had both ETs there so it feels comfortable). I'm seeing them on Monday to have a consultation. 
Am i being crazy? Who else on here is doing a full cycle with DrG? Part of me is worried that my head is so all over the place that I've not given him a proper chance?!

Newday - how are you doing hon??
Sprinkles ... not long now? Any symptoms and how is the sore throat??  
FJ - if you need LIT looks like you could use your husbands blood as you don't have matches (I'm not sure what the pencil notes mean - so hope someone else can explain). 

On the BUPA front I've found it far easier to pay, ask Arkville to send me an invoice and claim direct with Bupa. I've never done it that way before but at least I'm in control. Arkville said to me yesterday that she's having issues with Bupa and getting them to pay and was surprised I'd got my cheque so quickly. If you're with Bupa you should have a book which came with the policy etc. Mine says they pay for 'reasonable investigations into the medical cause of infertility' .. I have had no mc or pg - just a failed ICSI and now failed FET and they have paid... 

xx


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## lalaby123 (Sep 21, 2008)

Niccad I am sorry it must be hard trying to make the right decision as to what to do next. I have seen quite a few ladies who are cycling with Dr G when having my drips but unfortunately they don't post on here. From what I gathered his protocol is very personalised and individually tailored hence no preprinted paperwork as he will just make it as he goes along depending on your case and what happens.....good luck with your decision making maybe put a question up on the IVF thread for anyone having a full cycle with him to come forward and give you advice.....


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## Jofie (Aug 7, 2008)

niccad - my last full ICSI was with Dr Gorgy. Wasn't successful, but I don't hold the protocol responsible. Mostly I think I should have stuck to my guns about not having a high dose of stimming drugs (which is what I think may have affected egg / embryo quality) as from this IUI I'm doing now, my feeling is I stim just as well on a lower dose with no downregging, but any other clinic would have advised the same. Pretty sure I'm going to have a fight with the NHS clinic about it for our upcoming free cycle if we get that far.  

If you can cope without the paperwork / protocol written down, I found him to be very good. I felt better looked after than when I cycled at the Lister. He monitors very closely (so cost of blood tests do mount up) and adjusts the dose of drugs depending on how you are responding. I felt very comfortable having EC done at the LWC - they are really lovely there. It's sedation, not GA, so you are sort of awake and aware, but I had no pain whatsoever during or after. DrG has a v. professional and reassuring way about him when it comes to EC, ET and now the IUI I've had done, so no worries on that score. It's harder to tell with the embryology side of things - LWC have a good reputation, but I did feel more confident about the Lister on that aspect - don't know why really. 

I find DrG is well-organised where it counts. Because it's only him, he always has your notes to hand! He may need to remind himself where you are at the start of consultations, but it's a far cry from the big clinics with their 'team' approach when you can see someone different for every appt throughout the cycle and you might not see your own consultant at all. 

As far as alternatives to the pill - I can't take the pill, it's contraindicated because of a neurological condition I have, so I was on Progynova for a few days before AF started. He will keep pushing the pill though, I suppose it's what he likes to use, so you will have to state quite strongly that you don't want it. 

My other tip is to insist on getting prescriptions for your stims in advance so you can get them elsewhere. He charges a lot if you get them from him and says it's because the drug companies charge a premium for Harley St. You can save almost half if you are prepared to jump on the tube to Shadwell and get them from Ali at Rigcharm Pharmacy.  

Hope this is useful - if you have any specific questions, send me a PM. 

Jo.


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## Han72 (Feb 15, 2007)

Hi sorry to crash in and out (again!) but just wanted to say to Niccad, I'd be very wary of any clinic that has everything all planned out to the last second when they have no idea as to how you'll react to the drugs. The reason why DrG can't give you specifics is cos he won't know until he's seen how you do on the drugs. I know it makes it totally nervewracking but this is part of what makes a cycle with him work. He plays it by ear rather than dumping everyone into a one size fits all protocol because that's what works best....

Also re reducing costs on the drugs, have a look here:

http://www.fertilityfriends.co.uk/forum/index.php?topic=9821.0

Good luck lovey and love to all!

xxx


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## Sprinkles (Nov 6, 2008)

Niccad re you worry about LIT effects wearing off, they are supposed to last up to 9 months so dont worry about that you should be fine if you start in Jan/Feb.  Good luck with whatever decision you make for your next clinic whether that be DrG or someone else xxx

Need to ask a question regarding gestone please.  Cant remember who said that they were alternating where they were injecting, ie right buttock, left buttock, right thigh, left thigh etc so as to reduce pain/bruising.  I'm suffering a little with a few bruises and on one side am definately running out of space so might have to tackle my thigh.  What I need to know is where on the thigh?  Initially I thought sort of your hip area on the side of your thigh but my friend has said she sat down grabbed a chunk of skin in the middle of her thigh, her lap sort of, and did it there but she was using blue needles which are a little shorter, any advice please?

Still no symptoms, apart from some spotting which has done my head in but have gone back to work now to try and take my mind off it, less than a week now til test date so not long now.


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## berry55 (Sep 4, 2008)

Hi girls 

Just another qn from me as i was thinking about  this today. I am due to have my level2 tests done with dr G on the 14th dec. I was hoping to start tx again nxt year with my Jan AF (i will be on long protocal this time so d/r on day 21 of jan cycle) do u think it will b possible to do this so soon with the tests being done on the 14th of dec? or do i u think i will have 2 hold tx off longer? 

Berry xxxxx


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## lalaby123 (Sep 21, 2008)

Berry it depends if u humira and/or LIT if u do u most likely hav to delay treatment if u only hav elevated NK cells then u should be ok for treatment cycle in Jan


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## ells (Mar 19, 2008)

Morning ladies,

Hope we are all okay.

Lalaby, how are you feeling?  Have you had any pg symptoms?

Sprinkles, all sounding very positive hunni     .  On the gestone, I was told when I took it that if you're injecting into your thigh, it should be done on the outside of your thigh, pref somewhere were you can grab a fleshy bit so you can pinch it.  Hope thats helpful.

Nix, how are you hun?  Have you got a plan of attack?

Berry, I'm in the same boat as you except I already have got my results, I need to start the humira but am trying to get it for my crohns to save some pennies.  When roughly would you day 21 be?

Niccard, how are you sweetie?  

FJ, I hope that you get some answers on the LIT.  I think,but I could be wrong, that certain numbers that match arent too bad where as others are, I think yours are okay   but I am sure one of the other ladies will be able to advise.  

Cozy, how are you doing hunni?  

Pinpin, hope you are doing well.

Mags, how are you?

Jolfie, hope you are okay.  I agree with what you said about Dr G, he is very good and definitely knows his stuff.  I am sure that he will get himself and the clinic more organised in the new year, he isnt going to get much choice as he get busier   .  Me and DH really like felt comfortable with him, and the fact that we can post questions on here makes it even easier to get things right!!  How are you feeling?  Any smptoms

Saffa, sorry cant answer you questions hun, but I am sure someone will be able to answer you soon.  Hope you are okay.

Newday, how are you hun?

Anna, hope you are okay?

Cath, Omni and Choice, hope you are all okay and have lovely round tums   .

Hello to anyone I may have missed    

AFM, well we got our paperwork to complete and sign yesterday for our next go!  The ball is rolling.  We have our appointment on 16th December.  I will be starting in Jan sometime I think.  Quick question, how far in advance should I do the humira before starting the tx?  I am hoping to get the nod from the doctor next Tuesday so hopefully we wont have to pay to  get it   .  If he doesnt give the nod, then I will just order it but just want to make sure that I will have the right amount of time etc.  We are up seeing Dr G on 15th at 11.30am will anyone else be there?

Hope you have a lovely day.

Ells


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## Jofie (Aug 7, 2008)

Hello everyone,

niccad - hope you're feeling a bit better today. 

Sprinkles - can't help re. gestone, I'm afraid. I heard in the thigh was really painful, so too chicken to try there.  I am finding that massaging is helping with the bruising this time  - doesn't seem so bad doing them myself.

ells - great news that you're getting started. Re. Humira - IIRC DrG thinks it's OK to continue having it right up until tx starts and even during stimming, unlike other places that prescribe it, but I think the ideal is to have time to re-test after the first lot (which you take 2 weeks apart) to see if it's worked before tx begins. So you would need a month, plus a few days / up to a week to get the results back. But it's a bit of a lottery really as it works first time for a lot of people but not everyone - humira did nothing for me, and I was on it for 3 months.

Thanks for asking how I'm doing. I'm 5 days post-ovulation at the moment and trying to stay sane. Had lots of aches / twinges the first few days low down on my right side (the side where my tube is) but they eased off yesterday which would make sense if fertilisation had occurred...but trying not to get my hopes up as it could have just been a reaction to the IUI. I've also been having vivid dreams and this morning woke with a dry mouth / metallic taste. Potential good signs, but could just be the progesterone so I won't read too much into them unless I start getting anything more obvious. Feeling quite pessimistic this morning.   

Hope everyone else is doing OK.


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## berry55 (Sep 4, 2008)

Hi girls,

Just off the phone with my Heath Insurance and they dont cover me  Damn it!!!!! Oh well at least i tried. 

Ells- My day 21 of jan AF should be about the 5th of feb. I'm really hoping that i can start tx by then   

xxxx


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## emhart (Dec 11, 2008)

Hi

I wondered if someone could help at all?  I was kindly directed to this thread by another ff.  I have had 5 fresh cycles, 1 fet but only one chem preg from all of those and wonder if this is down to immune issues.  The last 3 cycles have been at the ARGC where I have had the chicago tests and had ivig, aspirin, steroids, clexane and gestone.  
I have not really taken notice of the immune blood results as they were all in a language that meant nothing to me.  
I have ordered the Dr Beer book to see if I can get the low down on these - would they explain my results if i got a copy of them?
I have some questions after going through this thread but don't seem to get the answers 

If I was to see Dr Gorgy would I be able to take the ARGC results along or would I need to get them all done again?  
If I need to take copies of test results from my notes what exactly do I need to ask for?  
A few years ago we both had chromosome testing - is this part of it?

If someone could give me help with this it would be great.  I thought the ARGC was the best you could go to so am now wondering why we have wasted all this money if they are not


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## Saffa77 (Feb 6, 2008)

Ladies

I am back with more questions  :

Dont know if you remember me saying that the lab had lost my DP's DQ alpha testing etc.  Well they hadnt lost them just took longer to appear?!  anyways works out that we have a total DQ alpha match i am 0101 and 0102 and DP is 0101 and 0102 my LAD is 39.5 Both T and B cells so how does it work tho with having a complete match?  I spoke to Dr Gorgy this pm and he told me I would need LIT but is that because we have an exact match or because my % is not over 50%?  I am confused.  He mentioned that some people dont have a LAD test they just get a DQ alpha test and if its a match then they still get LIT - all very confusing to me can someone explain this better??  I wont have time to have my LIT done so he said if I get a BFP I could go down to Athens to get LIT straight away.....  Oh my head dont understand all this 

Also on earlier posts you ladies mentioned that does not use LIT what then gets used instead of LIT?  SO confusing all this.  Does this match mean I will never fall preggies?  Also how does it work with using Donor egg??


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## Jofie (Aug 7, 2008)

Hi emhart and welcome. 

The first thing is to get the test results you have had done explained. If you take them to DrG, you won't need to get them duplicated - I had my NK cells tested at the Lister and he went by those results. I don't have experience of ARGC but my understanding is they don't test / treat for every immune issue. Dr Gorgy does - he follows Alan Beer's research and tests comprehensively based on that. If you go and see him, you may get fuller answers than you've had up until now. I empathise with what you said about the results being difficult to follow - I have read Alan Beer's book but it doesn't all stick in my head! That said, it's definitely worth getting hold of - it's an accessible read and it will help make sense of things so you can make decisions based on your own knowledge as well as what the doctors say to you. Dr Gorgy is especially good for that I find - he likes well-informed patients and is happy to go into things with you, unlike a lot of consultants who get very defensive.  

Edited to add - you just need to ask ARGC for photocopies of all the tests / investigations you have done. If you can get a copy of all your notes of your previous cycle etc., it does no harm to have them, but the test results are the most important thing for taking to see Dr Gorgy.  

Good luck.


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## emhart (Dec 11, 2008)

Hi Jofie

thanks very much for coming back with a response so quickly.  I will call ARGC and ask for copies of all tests and then wait to get the book and have a read.  Hope this can then save some cash if we book to see Dr Gorgy early in the new year.  We have 2 frosties left and I just want to ensure I have checked every last thing out before using them as I dont think I can persuade dh to have another go


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## Sprinkles (Nov 6, 2008)

Hi guys

just a quick one, had a heavy bleed this morning so did a test, am 16dpo so dont think its wrong, and its a BFN.  To say am upset is an understatement, am devastated, this was it last chance saloon.  Have spent most of the day           and now I just have a raging headache and sore eyes from it all and cant think straight.  DH is gutted bless him he is so special.

Am going to do another test on Sunday just to use up the last one in the house as I now officially hate them, they are the final kick in the teeth.  Cant ring clinic as test day isnt til Tuesday so they wont do anything til then, but by then I might be able to hold a conversation over the phone to tell them without sobbing.

Going to take some time to try and get head round all this as would really like to be in a better place than this in a couple of weeks when its my 40th birthday, see what happens anyway.  Probably not going to be the best birthday or christmas I've ever had.

S xxx


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## lalaby123 (Sep 21, 2008)

Emhart sorry for your failed attempts so far just to add to what jofie has said that dr g tests your response to ivig as well as intralipid and will use more of whichever u respond to better it cud be that u do better with intralipid which is much cheaper also he gives ivig earlier than ARGC which may make the difference 

Berry sorry no luck with your insurance  

sprinkles         for your second week wait 

Jofie good luck on your wait       

AFM ladies it could all be over as I hav had a big bleed today   I can't do anything till scan tomoro to see if one or both are still there or not ...just called dr g to let him know and he was soooooooo nice and talked to me for ages not making false promises but that we will do everything we can based on what is thrown up at us and try to win the battle between us and the immune system

please   at least one is still there tomoro


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## lalaby123 (Sep 21, 2008)

Sprinkle I am soooooooooooooooo sorry I am really gutted for you


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## berry55 (Sep 4, 2008)

Sprinkles i'm so so so so sorry     xxxxxxxxxx

Lalaby- I'll keep u in my   2night xxxxxx


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## Jofie (Aug 7, 2008)

Sprinkles - I just don't know what to say. I'm so, so sorry. I hope you and DH can find a way to move forward and maybe there are  remaining options to explore? Sorry - don't know your full situation - don't want to say anything wrong at such a sensitive time. Thinking of you    

Lalaby -     the bleed is not a sign it's all over and one or both are still hanging in there and fighting. Sending      for scan tomorrow.


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## Ourturn (Oct 8, 2008)

Sprinkles - I'm sorry hun     

Lalaby - Keeping everything crossed for you     

Big   to everyone

Anna x


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## ells (Mar 19, 2008)

Sprinkles      I really hope that things change for you hunni.

Lalaby, I really am      for you that tomorrow brings you good news and that it was just the haematoma that they saw on the scan.     .  I am glad you were able to talk to Dr G and he was able to give you some confidence.

Jolfie, thank you hun.  So I should be okay if I get the nod next week then.  I should be able to get them in before Christmas all being well.  Your symptoms sounds promising     .

Emhart, welcome to the thread.  You will get lots of good advice from the ladies here.  Good luck with your appointment at Dr G's.  

Hope everyone else is well.

Ells


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## bankie (Dec 27, 2007)

Hi ladies,

A quick update from me - we got 4 eggs today, which is pretty much what I expected given our number of follies.  Obviously I would have liked more, but with diminished ovarian reserve and only 1 working ovary I have to be grateful for what I've got!!  I'm just    that at least one of them fertilises.

I have been feeling really off-colour since EC, which is not like me.  My blood pressure was very low for a while and they were worried about letting me go home.  It improved a bit so they let me leave, but despite sleeping for 2 hours as soon as I got home, I'm still feelling really woozy.  So I'm off back to my bed - sorry for no more personals tonight, but I'll let you know how I get on tomorrow.

Sprinkles - there are no words to say how sorry I am hun.      You know that you can call me if you need me.   

bankie


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## lalaby123 (Sep 21, 2008)

Bankie 4 is good prob better quality I   for at least one great embryo hope u feel better soon xxx

sprinkles thinking of u xxx

thanks all for well wishes I am not holding much hope as now hav AF type pains too  .....Will update tomoro xxx


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## Han72 (Feb 15, 2007)

Aww Sprinkles      But are you sure it's all over? You say you're 16dpo but when was ET? It has been known to get a -ive on a peestick and a +ive on the bloods even on OTD...       

lalaby       that your little beanie babies are hanging in there    

Love to all
xxx


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## mag108 (Jun 28, 2008)

Sprinkles I am so sorry. It is so so so hard. Sending you a massive hug. 
If your OTD is next week, can you hold onto some hope? I too turned 40 this yr and I dreaded it. In fact my ec was the day before. I felt ANCIENT. Now, I must admit, I forget it most of the time. I am still have the same plans...I still feel pretty much the same. (And I really dont think anyone else is bothered.)


Lalaby: I am sorry to hear that and you must be very anxious, but could it be the effects of the other little beanie not making it! Every one of my fingers and toes crossed for you hun. Really too soon to lose all hope. XXX for tomorrow  

Bankie: delighted you got a good crop! 

Niccard, how are you?

Nix, howdy girl hope you ok. 

Pinpin, xxx 

Newday, how are you hun?

Jofie: Good luck with it hun!

Cozy: You are very near your tx starting, how are you?

Berry: Sorry, your ins wont cover


emhart: welcome, am pretty new myrself

Saffa: Do you have the Dr Beer book, I think he explains it all there. 

Anna, hope you are okay?


Ells: good or you I bet that is satisfying

So no uNK test or hyster-thingmebob for me cos my period came early so had to postpone one til next week then I will have to wait til mid Jan for uNK as next AF is xmas. Blimey the months go by dont they. Feeling so fed up at work. 8yrs there, and all those folk going on mat leave, I am still slogging away. There has to be more to life

XX


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## bluprimrose (Sep 1, 2009)

evening ladies, sorry in advance for lack of personals but on a train and on my phone & when i reply i can't see any posts.

lalaby i am really praying for you that the bleed is just one of those bleeds some people have when they're pg.  am looking forward to reading some good news from you here tomorrow...

sprinkles, i am so sorry i really am. sending you hugs and hope your dh is giving you real ones.

afm, scan in the morning to determine when ec is (probably monday).  i really want to feel excited and positive but am finding it hard to feel anything but negative - it's so hard having been here so many times before.  i pray i have eggs in my (16 or so) follies, i pray they fertilise and i pray i have some good embies to put back.  and of course i pray for a bfp - is that all too much to ask for?!

love to you all - & thanks again for all your incredible advice and support over the past weeks - this thread really is amazing!

bpxx


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## Jofie (Aug 7, 2008)

Hello everyone,
Just popping in to say good luck with fertilisation this morning bankie - I've never had more than 4 eggs either, but quality is the thing (cliched but true)  . 

Lalaby - thinking of you this morning and sending massive    . Hoping for good news. 

Mag - how frustrating you have to wait until next month. I know what you mean about watching people go off on maternity leave. Friends (younger than me) all seem to suddenly be getting married so they can start popping out the babies. Makes me just want to keep my head down and not see or talk to anyone. 

BP - sending loads of    and    for your scan this morning. 

Nothing much to report here at nearly halfway through 2ww. Very slight pains and feeling of fullness in lower abdomen. Also my achilles tendons are aching (old symptom I haven't had since thyroid was fixed) which could be a sign that my immune system is flaring up a bit , so made sure I took my prednisolone on an empty stomach today as last IVIG was over a month ago. 

Hope everyone else is doing OK.


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## Saffa77 (Feb 6, 2008)

Sprinkles


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## siheilwli (Jan 18, 2006)

Sprinkles -  
Lalaby - hope the bleeding is just temporary for you.

I was really down yesterday - scan showed only 4 proper follies, I think at this rate EC will be around Wed/Thurs. Oh well, hope they're good quality ones    Must have some positive mental attitude  

I'm about to do my first clexane jab .... any tips?


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## Cozy (Jul 17, 2008)

Sprinkles, so sorry to read your post. I really hoped and   it would work for you. Though if your OTD is not til Tuesday it could change. Take care   

Lalaby, I really hope its just the haematoma coming away and   that everything will work out ok.  

Cozy


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## ells (Mar 19, 2008)

Morning ladies,

Bankie, hope you get good fertilisation and have some lovely embies, sending them lots of      (growing vibes  ).

Lalaby, really hope that you come back with some good news hunni. Thinking of you today.  

Siheilwli, this might help 



 . Its the you tube video for the clex injection. I hope that you get some late bloomers next week, but you are right it is quality not quantity.

BP good luck hunni. Will be having a blood test to check for levels? I hope that you get a good batch in there.

Just want to send Sprinkles lots of    I am still  that things change for you hunni.

Hello to eveyone else.

Ells

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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## berry55 (Sep 4, 2008)

lalaby- good luck for today!    xxx


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## FJ (Aug 9, 2008)

Hi 
Thank you for your help. I am so sorry Sprinkles   . Lalaby really hope the bleeding has stopped   .
Just had a telephone consultation with Dr Gorgy. For our medicated FET starting soon he said we need Celaxane and progesterone. We are going to go to The Portland for LIT and have IVIG and Intralipids with Dr G. Its all very scary.  I am hoping that IVIG is safe I am not keen on having other peoples blood transfused into me unless its an emergency but I guess my infertiliy is an emergency of sorts. Is there any risk of infection? Am more wary as its not NHS. Its so expensive its untrue but feel we have no choice. IF the FET fails would we need all this treatment again if we decide we can bear another full cycle or does LIT and IVIG etc last for a while. 
Best wishes to you all 
FJ xxxxi


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## siheilwli (Jan 18, 2006)

Ells - thanks for the link to the clexane video.... jab done!
Cat
x


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## bluprimrose (Sep 1, 2009)

hello all

thank you for your good wishes.  i have 16 good size follicles today and some smaller ones.  had an oestradiol blood test (which i don't usually have) and am just waiting for the clinic to call me re my dose.  looks like ec will probably be wed now.

just a thought on the clexane video.  if it's the one that i saw on you tube, the girl doesn't pinch her tummy skin, she just plunges the needle in.  i personally wouldn't do it that way as the injection's meant to go into the skin/fatty tissue and not muscle - and if you don't pinch the skin there is a danger of hitting a muscle which isn't good.  i've done that before and got a huge lump and massive bruise (about 6 inches square) - which is still there (in shadow) over 3 months later.  there're also directions on the leaflet inside the box.  of course you must do what works for you - but i just wanted to let you know my thoughts after seeing the video.

bpxx


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## siheilwli (Jan 18, 2006)

THanks BP - I didn't like the thought of not pinching.... and I've enough to pinch!! So I did, and pushed it in slowly like she did - when I empty the injection my needle then retracts, so wasn't too bad at all.
It was a bit painful to push in though, but that may have been cos I was nervous! 
Cat


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## bankie (Dec 27, 2007)

Hello ladies,

lalaby - thinking of you today hun, I hope that you get some good news.   

BP - 16 follies is an excellent result, I'm     for lots of good eggs for you next week.

Well I got the call and 1 of my eggs was immature, but the other 3 have all fertilised - phew what a relief!!

I'm booked in provisonally for ET on Sunday, but the embryologist said that if all 3 are going strong on Sunday, we could take them to blasts.  I really don't think this will happen though and will be quite happy with a day 3 transfer with good embies.  It's also our wedding anniversary on Sunday, so I think that has to be a good omen!    

 bankie


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## siheilwli (Jan 18, 2006)

Wonderful news Bankie - will they freeze one if you've got one left?


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## ells (Mar 19, 2008)

Thats fantstic news Bankie.  Well done eggies        .

BP, its looking good hunni   .

Cat - I think I will be pinching too - I think it helps to numb the area to me   . Strange logic I know but I figure if you pinch it it hurts less   .

Lalaby really hope that everything is okay,   

Ells


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## Saffa77 (Feb 6, 2008)

Bankie - fantastic

BP- wow!!!

As for me I was worried about my clexane dose of 60mg so Dr G said he could lower it to 40mg and if BFP then up to 60mg - Is it cheaper getting clexane from Healthcare at home or pharmacy - healthcare have quoted me £159.56 am presuming that is for 4 weeks not sure.

Thanks S


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## siheilwli (Jan 18, 2006)

Saffa - have you tried getting it from your GP?  Mine wasn't the most supportive of docs, but still agreed to give me clexane on an NHS precription. It's worth a try.

Cat


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## Pinpin (Nov 4, 2008)

Hi everyone,

Sprinkles - I am so sorry   I don't think any words can make this any easier . I am   that you find a way forward and maybe with the help of our wonderful Dr G it might not be the end you know  

Lalaby - I am so sorry to hear what happened to you I am    for you and your babies to be fine. I think I may have seen at Dr G this am. Did you have long dark hair and went in at around 11.30am? If it was you then I was the girl who came out of Dr G office when you went in i was in a brown dress and purple coat. I hope you got some good news this morning  

Ells - well done it sounds like you are going to be the first ever to get the much talked about humira on NHS. Go girl!  

Bankie - that is a fantastic fertilisation rate well done you and your DH   and Happy anniversary for Sunday, it's lovely that you might be having ET then  

Siheilwli - well done for doing your first clexane and yes I definitely think pinching is essential to avoid the attractive massive bruises  
I send you some    for those follies to grow there is still a lot of time so eat some nuts and put a hot water bottle on your tummy they will grow nice and ripe.

BP - WOW! 16 follies is excellent, you are bound to have some good eggs and in good numbers, you should get some frosties no doubt. 

Jofie - I am   for a BFP for you. Just wanted to say that the symptoms you have of your immune system fighting are not a bad thing at all. I had the same thing (pains in my knees at time of implantation and Lalaby had her cold soares too) and was worried it was a bad sign well it turned out to be good, so I'd say you're on the right track !  

Mag108 - sorry it's all been postpon but you;ve got your LIt coming soon and it sounds like you will working on that BFP early in 2010 so not long ! 

Nix - how are you doing hun?  

Emhart - welcome to the thread

Niccad - I knwo it's hard making a decision of where to go for private goes. I like the Bridge too and I do believe they are fantastic embryologist there. As you know I am a great fan of Dr G  so I think he would be a great choice for a full cycle and i personally like the fact that there isn't a written down process for his protocols as it means he customises them to each patient. I don't really know the other clinic you mentioned though.
I hope you are enjoying your weekend in Loch lommond and the weather there is as nice as it is down her ein surrey although cold  - I am looking forward to seeing you next tuesday  

Saffa - sorry I can't help with how the prices of clexane compare between these 2 pharmacies as I order mine from Fazeley and they are £117.60 for 4 weeks so cheaper than what you have been quoted actually.

AFM - I had a scare as on Wednesday I had a small spot of brown on my pantyliner I didn't think too much of it then because it was brown and really looked like old blood not fresh (sorry TMI), I went to my GP yesterday and mentioned this and she recommended an emergency scan (this is what scared me I think!) on the NHS which they could not give until next Tuesday so I called Dr G this am and he was not too worried about the brown spot but said to come in for a scan if it would put my mind at rest so I did and saw our baby again and all was fine. Dr G told me off for being such a worrier and assured me it was fine and our little prawn is now 2.55cm! We got a new pic where we can see the head, belly, little arms and feet  
I think he is right in saying I need to relax so I am going to try and do this now and enjoy our weekend, it's my DH birthday and we have some family coming to stay with us for a diner at home on saturday night.

Finally, I wanted to say that I asked Dr G about the swine flu vaccine this am and he told me he has done a lot of reading and research on it at the weekend and that his view was that it is best to have the jab as the risks if catching swine are greater than to have the jab. He says the american papers ensure that the vaccine is safe to take before 12 weeks however his personal recommendation would be to wait until 13 weeks if it is possible to stay away and safe from swine flu until then.

Love to all,
Pinpin xx


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## siheilwli (Jan 18, 2006)

Pinpin - I think it's only natural to be anxious, especially with bleeding, but fantastic news that your baby is fine, and obviously just likes to be photographed!  
Cat


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## lalaby123 (Sep 21, 2008)

hi ladies 

thank you all for your kind wishes      i am glad to say the scan showed both heartbeats still there. One baby has grown a lot to 11mm and the other has grown but lagging behind at 6mm. Also it's sac has shrunk which doesn't look too hopeful. Both sacs are surrounded by hematoma which again is not good. However for now all is ok and Care have now discharged me to the hands of NHS but said I need to be seen urgently by someone and be closely monitored. I told Dr G and he told me to restart clexane. 

Nix - how are you and hope you are ok and can formulate a plan forward....

Mag - sorry your double whammy internal has been split up now :-( 

BP - good luck with upcoming EC hope you get good eggs and they fertilise and you must stay positive....are you doing acupunture on day of ET?? i did before and after

Jofie - good luck with the rest of your week wait       hope you will stay away from the stix

Siheilwli - quality definitely better than quantity keeping fingers crossed for you    

Cozy - when are you off

Ells - have you got your humira on NHS yet?

Berry - hope you are less stressed and got your hands on Dr Beer's book

Bankie - Day 3 transfer on wedding anniversary sounds really good )))

FJ - don't worry about IVIG - i was scared at first but when you see it its not scary at all its a clear liquid looks nothing like blood and it has been purified a million times and been used as treatment for many things for many many years with very low risk of any infections

Saffa - I asked my GP to write me prescription for clexane and he was happy to do give that a try first or ask Dr G to send you a private one then take it to your GP and say you need it converted into NHS and they should do it

Pinpin - no i wasn't in London today hun but soooooo glad your scan showed such a lovely baby with arms and feet how amazing mine still looks like a squigle! and count yourself lucky with just brown spotting. I am guessing you don't have any hematoma which is really good. I have lots :-(

Niccad - how's loch lomond? i meant to take DH there for his bday as he's scottish but not been there.....hope you had a nice time

Emhart - hello 

love to anyone else I have missed out xxx


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## Han72 (Feb 15, 2007)

Lalaby - so pleased to hear both h/bs are still there, really hope squiggle number 2 can hang on in there       Have you managed to find a consultant to monitor you yet? 

xxx


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## lalaby123 (Sep 21, 2008)

Nix -     I saw my gp afterwards and asked for an urgent referral so waiting on that one now....not sure how it all works but i hope i get seen by someone good and thorough like Dr G


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## siheilwli (Jan 18, 2006)

Lalaby -     that both beanies will be safe for you. Have you got a good GP who'll rush you through a referral?


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## Han72 (Feb 15, 2007)

Lordeee Pinpin, so sorry I forgot to say congrats on seeing your l'il prawn      sorry the NHS gave yo a scare but lovely to see Dr G bein his usual fabulously reassuring self! Bless 

xxx


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## bankie (Dec 27, 2007)

Pinpin - so glad that all is well with your beanie   

Lalaby - it's good that you saw 2 heartbeats and I'm     that your little one catches up.  My SIL's sister had a hematoma early on in her pregnancy, but I'm happy to say that she now has a healthy baby girl.  I'm sure the outcome will be similarly positive for you hun, stay strong.


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## ells (Mar 19, 2008)

Yey             for pinpin and lalaby.  Lalaby great news that they are both still there.  Hopefully the haematomas will strart to shrink and disappear by the next scan hunni.  
Pinpin, scary hunni, I am really please to hear that everything is okay and that you are now going to relax a little bit.   

I havent managed to get the Humira yet, I have to see this other doctor (he looks after the explorer Sir Ranolf Finnes - he's really nice I used to see him quite often when I was under investigation a few years ago) I see him Tuesday evening, if I can convince him to do it then I should be able to get it either on the NHS or through BUPA.  Fingers crossed.

Gotta dash need to finish a few emails before home time   .  Really glad you had good news lalaby and pinpin    .

Ells


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## Jofie (Aug 7, 2008)

lalaby - so glad to hear both are fighting to stay with you. I'll continue to     that the hematoma resolves itself. Hope you find a great consultant to take care of you, and that you're resting up completely.  

bankie- congrats on your fantastic fertilisation rate. They must be looking great for the embryologist to suggest taking them to blast!  

FJ - I didn't re-test after LIT because treatment was delayed and when I finally did, the protection was still there 7 months later. Don't think IVIG lasts as long though - weeks rather than months. 

BP - hope your estradiol test shows a nice high level, that will be a good indication for a number of good eggs. 

siheilwli - hope those follicles continue to grow and maybe a few more will catch up? Sending     to help with your PMA. 

Pinpin - glad you got the reassurance you needed and the little one is going strong! 

Thanks for the good wishes everyone. Fortunately I have a busy weekend coming up, then loads of meetings next week to take my mind off 2ww madness. Lalaby - doubt I'll test until 11dpo (Wednesday) at the earliest and only then if I'm getting some stronger symptoms. If not, I won't be tempted to bother!  

Hope everyone has a good weekend.


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## lalaby123 (Sep 21, 2008)

ps Sprinkles still thinking of you has anything happened since has AF come proper


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## Sprinkles (Nov 6, 2008)

Hi guys

Thanks for all your kind comments, it really helps to know that there are people out there that know how you feel.

pinpin sorry for your scare but great news that little prawn is growing and all is good, try relax (I know easier said than done) and look after yourself x

lalaby great news on bubs being fine, hopefully the haematoma will do one  

Jofie everything crossed for you x

Ells good luck with the humira x

bankie glad you're feeling better after EC, and praying those little embies keep growing and they get them to blast maybe, take care hun xxx

sorry if missed anyone head is mince.  AF not appeared full on yet but am guessing the gestone and cyclogest is holding that off, its definately there waiting in the wings.  Am still bleeding though and just waiting til official test day then I can make the call to clinic and ask for a counselling appointment.  DH is being fab as usual.


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## ells (Mar 19, 2008)

Sprinkles      

Ells


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## Newday (Apr 27, 2005)

Have any of you managed to get Dr G to write a prescription so you can use health care at home?
Thanks
dawn


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## lalaby123 (Sep 21, 2008)

I hav asked but haven't got it yet however I met pregnant ladies in his clinic who hav had prescriptions from him and done it with HCAH


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## Saffa77 (Feb 6, 2008)

Hi ladie

I spoke to dr G on Thursday for my intralipids script and clexane 40mg ( I was originally on 60mg but told him i was concerned about high dose so am on 40mg and IF BFP then up to 60mg )  and he sent Healthcare at home a script and they phoned me on Thursday PM to organise delivery etc.

Sx


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## ells (Mar 19, 2008)

Hi Newday,

Dr G gave me a private script as I was going to see if I could get it from my GP.  

How is everyone?

Bankie, how did you go on sweetie?

Sprinkles, hope you are okay   

Lalaby, how are you doing hunni?  

Hope everyone else is okay.  
Ells


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## bankie (Dec 27, 2007)

Hi Ells,

Thanks for asking - I had ET today and all went well.     I'm pleased to say that I've got 2 grade 1 embies back onboard the mother ship    .  One 10 cell and 1 6 cell, so I'm very pleased.  Just need to take it easy now and try to keep myself sane for the next 2 weeks!!

 bankie


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## berry55 (Sep 4, 2008)

do u need to go to Dr Gorgys clinic to have the intralipids administerd? that might be a really stupid qn... sorry... but  i have no idea


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## Saffa77 (Feb 6, 2008)

Hi berry

no he can give you/post a script for intralipids and you can contact healthcare at home and they will come to your house to administer it. dr g is 350 and healthcare is 285 they can also administer ivig.


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## lalaby123 (Sep 21, 2008)

Bankie congrats on being PUPO   and good luck with the dreaded 2ww xxx


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## Pinpin (Nov 4, 2008)

Bankie -    well done on being PUPO with those top grade embies! I hope you have your feet up and good luck with the 2ww   

Lalaby - how are you doing? I was so relieved to read that both babies were there on the scan. I   for the hematomas to go away  

Pinpin x


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## ells (Mar 19, 2008)

Wow Bankie, great news.  2 Top notch embies on board.  Sending you a shed load of      and lots of        and sticky vibes hunni.  Take it easy for the next 2 weeks sweetie.  What are your plans?

Berry you dont have to have the infusions with Dr G, he has said he would prefer to do them so that he can see how you react but is happy to give your a private px.  

Have a good night all.  

Ells


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## siheilwli (Jan 18, 2006)

CONGRATS on being PUPO Bankie!    
I'm going in for my first IVIG today - any tips... and is it any cheaper to get it done by Healthcare at Home?

Cat


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## Cozy (Jul 17, 2008)

Hi,

re IVIg and Intralipids, it is cheaper to have it done at home with HCAH, it was £285 for intra and £1200 ish for IVIg. 

I've just had IVIg done at home  - nurse just gone. Went very well and I am so glad I had it done in the comfort of my own home

Cozy


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## niccad (Apr 28, 2009)

Hi to all – just back from long weekend in Loch Lomond which did my PMA loads of good after the nightmare of a BFN last week. Feeling a load better and have booked in for a fresh cycle with the Bridge centre which starts the beginning of Jan… doing short protocol and they agreed with all the immune treatment and will also do intralipids (but not IVIG – not a bad thing for me as I reacted quite badly to this anyhow & my immunes were better with intralipids). Feeling good that I now have a plan, and that it’s starting quite soon. 

Jofie – how are you doing? I’m praying that your IUI is working and there is a little embie bedding in and getting nice and comfie 

Berry – what a nightmare that they won’t cover you… Boo… Do they not cover any investigation into fertility or just nothing which mentions fertility?

Emhart – welcome to the thread. If you have had tests done DrG won’t redo them – he’ll just do the ones you haven’t/didn’t have done. I have also heard that ARGC are very good. Good luck x

Spinkles – I am so so so sorry that it’s not worked   . I hope that you are coping OK. I still can’t get my head around the fact that the immune tx didn’t work for me so know how you must be feeling. Let’s just pray that 2010 is the year for it to work for us both xx

Lalaby – I’ve been away so only able to read the thread but not respond. I got really upset reading about your bleed and was praying that you were ok. I wanted to say that lots of people bleed but knew this wasn’t going to help. How are you doing now? Interested to know why DrG said to stop the clexane and now to start again? 

Bankie – Congrats on being PUPO!! On your anniversary as well… that’s a great sign. Hoping that they are making themselves at home x

Mag108 – what a pain having to wait. Just when you get yourself all psyched up. I agree – there has to be more to life. I’m also fed up of watching people grow bumps, go on maternity leave, come back and grow second bumps. It makes me want to scream at times – we’ll get there in the end though xx

BP – I hope that EC went well today xx

Newday – how are you doing?? Thinking of you

Siheilwhi – good luck for EC this week. How are you getting on with the clexane jabs? Guessing your sat having IVIG now & I hope it's going well. My tip would be to wear warm clothes and take some nice snacks and a good book xx

Pinpin – really looking forward to seeing you tomorrow. Seeing blood must have been an absolute nightmare  - so glad that you had the scan so quickly and got to see your little beanie growing. Must have been amazing actually seeing head, arms and legs. It’s making me well up just thinking what it must be like. Hoping to see a little bump tomorrow (if it’s not there can you please eat loads first and just breath out?). xxxx

hi to everyone I've missed
Nic x


----------



## FJ (Aug 9, 2008)

Hi
I am feeling a bit at the end of my tether. I talked to Dr Armstrong on Friday re LIT and thought I would be able to fit it in in January for Frozen cycle and rang today and the secretary said that there is a waiting list and she cannot say when we could have the treatment maybe March. Is there any alternative but to go to Greece? There are no flights from Manchester til Feb even if by some miracle we could fit it in with cycle. I am so sick of it all I can't sleep and am super stressed. No reply when I tried to call Greece. Looks like Dr not good replying to e mails from forum. Is it a case of delaying the Frozen Cycle do you all think? If my LAD levels are low is there no way FET could work? Not sure what to tell hospital if want to delay they dont believe in immune probs. Sorry to rant but can't believe what I am having to do to try and have a baby like you all its so ridiculous. One more question sorry do you have to have IVIG and Intralipid or can you just have Intralipid with Dr Gorgy?
best wishes xxx


----------



## niccad (Apr 28, 2009)

Hi FJ - what a nightmare. Getting LIT done is so hard as PA can only do 2 a month or something. Good luck trying to find an alternative. Dr G will do IVIG & intralipid or just intralipids... although he prefers to mix if possible. I will do intralipids only on my next go as my blood reacted better.... Hope this helps and good luck sorting out LIT. What are your LAD levels? 
Nic x


----------



## ells (Mar 19, 2008)

Hi FJ,

I think there was someone else in a similar position to you, in fact I think I will be too   , but I think if you have a chat with Dr G he is pretty good a sorting it out with both Greece and PA.  Good luck hun.

Niccard, sounds like you had a great holiday and it was just what you needed.  Its great that you have a plan hun.  

Hope everyone else is okay  .

D day tomorrow on the humira - I have my appointment with the second opinion doc at 6.50pm wish me luck   .

Ells


----------



## lalaby123 (Sep 21, 2008)

Niccad glad u had a nice time and glad u hav a good plan of action for January 
I think dr g stopped the clexane and aspirin just to be on safe side as my scan showed bleeding in my womb, once I had a bleed and had second scan he said to go back on clexane gradually ie first 20mg then 40 mg he said clexane doesn't cause bleeding but if I had been on it and bled they would hav blamed the clexane so it was good I had stopped it when I did bleed! He said it's a case of getting the balance right and there is no set answer ... I hav read that beer clinic patients get the same advice with hematomas so he seems to be following that...

Ells good luck with humira prescription 

FJ sorry for your nightmares u cud fly to Athens via London but inknow it's not ideal I hope dr g can help u get sorted 

Hi to others xxx


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## siheilwli (Jan 18, 2006)

Thanks for the good wishes everyone. IVIG was fine, yes my arm got really cold!! Wish I knew [email protected] was cheaper before. Never mind! Think I was a bit more relaxed in Dr G's office, if I neef another dose, will ask for private prescription. 

FJ. If it's any help I found it was cheaper to book DH and me on a one night break to Athens through expedia website than book just the flights!!! I think because we're going between xmas and New Year. We paid under £500 for flights and 5* hotel called Athens Gate (which is lovely and where we stayed last week)

Cat


----------



## Sprinkles (Nov 6, 2008)

Hi ladies

Quick update I did another test on Sunday which was only 2 days before official test date and 16dp3dt, and as I already knew a BFN so not going to bother doing another tomorrow, OTD.  Will just ring the hospital and get the formalities out of the way.

Stopped the gestone and cyclogest yesterday as well and am having the period from hell.  Yet another kick in the teeth.

Anyway, just wanted to wish everyone on this thread the very best of luck with pgs, current and upcoming tx's.  I dont think I'll be posting much as my journey, with immunes at least, has come to an end, but wanted to thank you all for your kind words and thoughts, and support through the rollercoaster ride.

Again wishing you all the very best of luck and       for lots of BFPs for you all xxx

I'm off to try and get my head together to try and enjoy some of my birthday next week.

Love to all  

Sprinkles xxx


----------



## ells (Mar 19, 2008)

Sprinkles             

Ells


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## mag108 (Jun 28, 2008)

bankie: Fantastic!

Fj
I had a lot of frustration booking Dr T. In the end I asked someone going out to book and she very kindly did.

Sprinkle: how very dissappointing...I am so sorry that it hasnt worked and so so sorry that the immunes tx seems not to have worked for you. I wish you every fortune for the future whatever that is X


----------



## blueytoo (Oct 5, 2003)

I'm hoping that someone in here has had their Anti Nuclear Antibodies tested and can help. In Dr Beers book it states that anything equal to or over 1:40 titre is a positive result. My GP just did this test for me and my result reads 80 titre and then says "normal" next to it. It also says "speckled" which according to Dr Beer is the most common pattern in women with miscarriages of an immune etiology so that all adds up for me. 

I'm fairly sure that my result means I am positive for ANA as I have been borderline for them previously. Does anyone know? I had really hoped to escape the evil steroids this time and I am absolutely not prepared to take them again for a fifth cycle unless testing indicates it as I don't believe in steroids for NKC issues as I go along with Dr Sher's thinking on that now and I cannot bear the side effects of the vile things.

TIA

Claire xx


----------



## Jofie (Aug 7, 2008)

Hi everyone,
bankie - great news. Hope the rest of the 2ww flies past   

Sprinkles - let us know how you get on if you come up with a plan B than doesn't involve immune tx. Wishing you the very best for the future and I hope you manage to enjoy your birthday.  

Feistyblue- sorry, I don't know anything about anti-nuclear antibodies. Hopefully someone else can help. What does Dr Sher say about steroids? I don't like the idea of being on them for too long either. 

Lalaby - good to see you posting and you have had no more bleeding.  

niccad - glad you had a nice time in Loch Lomond. Thanks for asking how I am. I've been really up and down over the last few days, but was feeling great most of yesterday (right up until I woke up this morning). I had been having some quite strong symptoms while I was away visiting family over the weekend and by last night was fairly hopeful I'd be in for a BFP this time. But everything seems to have gone away last night and today. I still getting some mild twinges, but the sore boobs, aching hips, blue veins and vivid dreams I was experiencing have vanished - it's like everything's calmed down completely.   So now I'm thinking it may have been a failed implantation. Tomorrow is 10dpo so still a few days until I can test. Could do with any babydust / bubbles anyone can send my way, as my PMA has completely deserted me for the time being. Will try and get a good night's sleep and hopefully things will look brighter in the morning.


----------



## Sprinkles (Nov 6, 2008)

Jofie 

                              

hope that helps hun xxx


----------



## ells (Mar 19, 2008)

Jolfie,

[fly]                       [/fly]

[fly]               [fly]

[/fly]               [/fly]

I hope the baby dust and pma dance helps hun   

Sprinkles I hope you are okay are you planning on seeing Dr G for a follow up?

Lalaby great news that the bleeding has stopped.

Bankie, how are you doing hunni?

**, sorry hun i cant help on the ANA's I a sure someone will be along soon.

Pinpin, how are you feeling hun?

Mags how are you hunni?

Newday, hope you are okay too hun.

Berry how are you doing sweetie. It might be worth saying that you are having investigations into your monthly cycle?

BP How did EC go?

Cozy, when are you starting hun?

Morning to everyone else hope you are all well.

D Day later for me on the humira     . In all fairness, i have had enough of feeling yuk and my tum has been all over the place so I really want the humira to zap it into a controllable arena IYKWIM  . Hopefully then I can take the drugs and they will keep things at bay. I will let you know how I get on.

Ells


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## itsmyturn (May 30, 2009)

morning ladies,

i'm new on this site, i'm having immune treatment with dr g (undecided on cycling bit), and i'm finding the behaviour abit odd/bizarre - on our 1st appt, he yawned wide mouth 4 times& his shirt was extremely creased as if he had just rolled out of bed, i could not hear him for the traffic noise from the window behind him,i could not hear his mutterings, he kept using medical jargon, the phone kept going off,for me that was the worse impression that i ever had of an appointment and i had so looked forward to it. At the end he practically shoved us out of his office, i just prayed we got the right tests done. I woke up at 5am to travel for that appt.Should have just turned up at the blood clinic down the road instead.

I was not looking forward to the follow-up consult. 

I delayed the visit by 3wks.......he never yawned, he looked crease-free, no traffic noise drowning his voice out, but the incessant phone, the assistant popped in to talk about another client, then before our hour is up, he gives us the prescription does not say anything about it, then shoves us out the door again. At the door, the phone goes off,a client in reception wants a quick word, he slams his door, without a word.

My delicate sensibilties is shredded. Its a real shame since he offers immune treatment without compulsory cycling with him, but if you choose to cycle with him is his behaviour any different? - it would be my 1st ever ivf, so i need alot of hand holding and i don't get the feeling he being a one-man band would have the time for it.Is he the same with everyone Or am i that lucky


----------



## Jofie (Aug 7, 2008)

Thank you, ells and Sprinkles.  

ells - good luck for this afternoon getting the humira.

itsmyturn - I do get the impression that Dr Gorgy is getting busier all the time, and he appears to work 6 days a week until 11pm each night, with only the occasional week off. I have wondered how long he can carry on taking on more and more patients without employing more staff. The hand-holding you will get from him is different to other clinics - you will get more personal attention as you will always see him and he will carry out all aspects of the tx from scans to egg collection to embryo transfer. He will also be very good about monitoring you and calling you with changes to your protocol during tx. But you will also have to cope with the ringing phone, interruptions from the receptionist and difficulty with his communication style. He is juggling a lot, and isn't the best at explaining the medical stuff so you will get on with him much better if you ask a lot of questions and ask him to repeat things (by phone later if you don't get it the first time), and also if you are pro-active about finding out information independently. This thread will be invaluable if you decide to go ahead and have tx with him.  

Dr Gorgy suits me because I can always speak to him personally and he adjusts tx depending on how you are responding and he is approachable when you get to know him a bit. He is also very good at treating patients and very kind. I have found consultants at other places to be arrogant and inflexible which I find more off-putting. But I think it's really a matter of what you personally are comfortable with. Good luck whatever you decide. 

As for me - not feeling much different this morning, but am going to try not to get too down and just get through the next four days.  

Hope everyone else is doing OK.


----------



## Saffa77 (Feb 6, 2008)

itsmyturn said:


> morning ladies,
> 
> i'm new on this site, i'm having immune treatment with dr g (undecided on cycling bit), and i'm finding the behaviour abit odd/bizarre - on our 1st appt, he yawned wide mouth 4 times& his shirt was extremely creased as if he had just rolled out of bed, i could not hear him for the traffic noise from the window behind him,i could not hear his mutterings, he kept using medical jargon, the phone kept going off,for me that was the worse impression that i ever had of an appointment and i had so looked forward to it. At the end he practically shoved us out of his office, i just prayed we got the right tests done. I woke up at 5am to travel for that appt.Should have just turned up at the blood clinic down the road instead.
> 
> ...


I totally agree with you!!! I also got and still do get a unsure settled feeling about it all and I also need a lot of explaining and we pay HEAPS of money and if you have any further questions then is £90 for a phone consult! I feel that it should be a lot less stress free and monitored especially if you dont cycle with him. i know lots of ladies in my area that went to him that wont take the drugs cos they just unsure of the whole thing.


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## bluprimrose (Sep 1, 2009)

hello everyone

sorry i've not been around much the past few days but i have been busy with work and not been able to get on my laptop at home.

i hope you're all well - and i'm sorry i am not writing to you all personally, but although i've just read your posts i can't see them as i reply! (am on my phone).

ells, thank you for asking.  my ec is tomorrow - so i'm feeling incredibly uncomfortable with my bursting ovaries!  can't wait to get my eggs out (fingers crossed my follies are laden with some! - 15 good size follies but usually lots are emtpy :-( ) and then praying for fertilisation and embryos to transfer.

ells, i don't have experience with humira - but good luck!  how do you take it and how does it make you feel?

lalaby hope things are looking increasingly positive, sounds like it.

hello to jofie, sprinkles, saffa, bankie, diane and everyone else - sending you all hugs on this fab thread.

pls send me loads of pma & baby dust - boy do i need it!

lol  

bpxx

p.s. did anyone reply re dr sher's thoughts on prednisolone/steroids?  will it give me something else to worry about?!


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## Sprinkles (Nov 6, 2008)

Ells ~ no luvvie not going to bother doing follow up with DrG, dont get me wrong everything he has done for me has been tip top but I just cant go through any more I'm at the end of the line.  I've had the humira and if it helps any didnt have any side effects at all apart from getting a cold after the second one which I took as a good sign as it lowered my NK cells quite dramatically.  Good luck with it you'll be fine.

BP ~ good luck for EC hope you get lots of eggies                      

         

Hope you're feeling ok today bankie, keep strong


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## blueytoo (Oct 5, 2003)

Jofie - Dr Sher believes and has researched that steroids have no effect whatsoever on NKC and so he does not prescribe them. Makes sense to me as I only BFN's and a miscarriage when I took steroids & IVig for my very high NKC. He was already not prescribing steroids for NKC before he started using intralipids and he has a 85-95% success rates with his immune patients.

I don't know what he says about steroids for non-NKC issues such as high ANA's etc. If I eventually get my clotting test results interpreted and it is suggested I take steroids for that issue then I will be going back to Dr Sher to ask what he thinks about steroids for that.

Claire xx


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## Saffa77 (Feb 6, 2008)

Feistyblue

On the subject of Dr Sher - I remember you menitoning somewhere that he is not a great believer of LIT?  is this true - I believe LIT is quite controversial - some say yes to it others dont believe in it.  Same with matching DQ alpha (which we have  and with both numbers) some clinics say this doesnt matter others have LIT for matching numbers.  

Thanks

Sx


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## blueytoo (Oct 5, 2003)

Saffa77 said:


> Feistyblue
> 
> On the subject of Dr Sher - I remember you menitoning somewhere that he is not a great believer of LIT? is this true - I believe LIT is quite controversial - some say yes to it others dont believe in it. Same with matching DQ alpha (which we have and with both numbers) some clinics say this doesnt matter others have LIT for matching numbers.
> 
> ...


Yes that's right as far as I know he does not use LIT at all, but if you have any questions you can just post on the SIRM website and the doctors answer themselves which is fantastic.

Claire xx


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## Saffa77 (Feb 6, 2008)

Feisty - really have you got a link to that site?  and does he take long to reply?  

Thanks 
Sx


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## siheilwli (Jan 18, 2006)

Girls, forgive no personals. 

After my IVIG yesterday I felt fine, but last night started feeling worse and worse. Speng the whole night vomiting & other end TMI!!! Dr G thinks it might have been food poisoning rather than a reaction to the drip. Absolutely exhausted and hoping it hasn't done my eggs any damage! I was supposed to do intralipids tomorrow? Feeling so awful I'm considering cancelling that. 

Does intralipids have any side effects?

Going for my scan now. EC on Thurs / fri hopefully.


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## niccad (Apr 28, 2009)

siheilwhi - I didn't do well with IVIG either... my face got really red and itchy straight away and my lips got really big. I felt really odd afterwards and kind of panicky. Intralipids I was absolutely fine with. No side effects at all & I haven't heard of anyone having any either.... Good luck with the scan 
Nic x


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## blueytoo (Oct 5, 2003)

Saffa77 said:


> Feisty - really have you got a link to that site? and does he take long to reply?
> 
> Thanks
> Sx


http://forums.haveababy.com/

Scroll down and post on the SIRM Las Vegas thread. He usually replies within 24 hours.

Claire xx

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)

Thank you found it and have posted my question.

Still so confused about this DQ alpha match of 100% and needing LIT!!! can anyone explain it better to me??

My LAD is for T and B cells IgG is 39.6% and we have a 100% match, Beer book says you dont need LIT unless under 30% but other clinics say you need LIT if there is a match - how does it work - never got a proper answer yet! anyone - Also spoke to Gorgy and he says having LIT if i get a BFP is sufficient but how would I get pregnant in the first place if supposedly I dont have enough anitbodies as its not over 50%?!!! HELP -

Sx


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## itsmyturn (May 30, 2009)

*jofie * - hi, its ironic that in an 'understandable' way he's saving startup business, staff cost, but at the expense of putting of potential customers?? i know that before he didn't even have an assistant, so it was worse then. He gets affronted if i ask him to repeat,explain or speak louder.In terms of pro-active, i assure you i have learnt as much as humanely possible from my fellow ff before i approached him, and had only wanted him to fill in the holes where my research failed me (infact in an appt with another ivf consultants she was so impressed by my research, she asked me if i wanted to work for her- declined i had a baby quest). To be frank, i can grit my teeth, and put up with all of the above,if for sure the treatment is not haphazardous,but there lies the question.Thx i wish you well.i'm undecided.

*saffa77* - hi to a fellow sufferor, on the one hand some behave in a professional manner but you know they are full of sh*t, but dr g by his manner i'm not sure what he's telling me, other than he's very busy, running a one man band.That £90 is expensive, and that lack of monitoring.....my gp freaked out when she saw his precription, she thought i was gonna off myself by it.....i'm having to source & teach myself those bloomin drugs.......cos i believe in dr beer and his fabulous bk.


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## itsmyturn (May 30, 2009)

Saffa77 said:


> Thank you found it and have posted my question.
> 
> Still so confused about this DQ alpha match of 100% and needing LIT!!! can anyone explain it better to me??
> 
> ...


saffa77 - i gotta datch, so this is quick;

- since you're 39.6%, you don't need lit 'to get' preggys(personally that fig is abit low and if it was me i would get lit), and if you do want lit, you need DONOR LIT.

- if you don't want lit, but get preggys, you definately need lit, 'to remain' preggys,

- 2 separate issues; to get preg, to remain preg.


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## Newday (Apr 27, 2005)

does marshmellow post on here?
dawn


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## Saffa77 (Feb 6, 2008)

Thanks itsmyturn - but why does it state in Beer book that if its over 30% i dont need LIT im almost 40% so dont think its bad at all (considering I have never been pregnant meaning my LAD results will be negative? ) I am borderline normal according to Beer book.  Also why do some doctors not believe in LIT? and why does it have to be so hard to get meaning hot trotting it across to Athens to get it?  Its illegal in USA is it not?  surely that means something?  Sorry just been doing a lot of reading into it.  i will have the LIT done if I get BFP (not too keen on it but if it means keeping the pregnancy ill do it) But he said i would need to do it as soon as I can after BFP but i believe Athens only does it every 2 weeks!!! what if its too late then?!


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## mag108 (Jun 28, 2008)

feisty: really big thanks for the Sher link. Very interesting. Are you going for tx there?

Jofie: here is tons of baby dust   


niccad - glad you had a nice time in Loch Lomond.  

**, Sorry but i cant help on the ANA's....

Ells: hope the humira does the trick 

itsmyturn: I am having immunes and a few other tests with Dr G. I too found him a little difficult at first. I find him easier to understand now. It does sound like you had quite a time of it at both appts. He is v good on immunes stuff.

My exp of IVF at another (top London) clinic during cycling is: Never get through on the phone therefore hardly speak to anyone. Minimal instruction by email. So I think there are issues with most places especially the good clinics....Only get to deal with IVF nurses...
It's a mixed bag.

BP: good luck for tomorrow!!!!!!!!

saffa, bankie, diane hello


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## Jofie (Aug 7, 2008)

itsmyturn - i didn't mean to suggest you weren't pro-active - i should have said if 'one' asks a lot of questions, not 'you' as i meant it generally not personal to you. i was just giving my experience of Dr Gorgy having seen him many times over the past year, of course i don't know how long you have been researching this - i firmly believe we, not the docs, are the leading experts on our own bodies! i should have been more clear. sorry if i have given offence - was honestly just trying to be helpful and answer your question.

For the record, Dr Gorgy has *never* charged me £90 for phoning up to ask him about something. personally i wouldn't agree to a phone consultation with him (or any doctor) and I'd be furious if he charged me after the fact, but then I've never been on the phone with him for more than a few minutes.

Mag - thank you and to everyone who has sent   / bubbles my way  

feistyblue - thanks for the info from Dr Sher re. steroids. very interesting. 85-95% success rate sounds amazing - unfortunately i can't have intralipids, allergic to eggs and soya 

Hi BP - sending  for you.

Hi to everyone else and night night.


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## bluprimrose (Sep 1, 2009)

Thank yoy for your good wishes.  just a quickie from me.  about to leave for ec - yikes!

love to you all

bpxx


----------



## lalaby123 (Sep 21, 2008)

Jofie keeping everyhtng crossed for you hon good luck on the wait and don't worry about lack of symptoms u know they don't mean a thing xxx

BP Good luck for EC today hope u get juicy eggs and they fertilise well xxx 

Itsmyturn hiya we met on the thyroid thread sorry u had a bad experience with dr g unfortunately his clinic can be chaotic at times and this is the major drawback however it is well compensated by the fact that he offers the most comprehensive immune testing and treatment in the UK and for us ladies he is our best chance of getting pregnant and carrying that pregnancy to term as he really cares and monitors u all the way till the end...if u wer really unhappy about your experience I would write to him he is v good at taking constructive criticism and will probably offer u another free consult or call and say u didn't understand certain things can he explain....examples of how he is different to other clinics I'm at Care in Manchester they wanted HPT on day 16 then scan two weeks later he wanted blood test on day 14 which showed my levels wer high and likely to be twins so I got to hav a scan at care at 5 weeks and 6 weeks, 6 week scan showed twins and hematoma care wer not concerned suggested scan at 8 weeks dr g concerned wanted scan 7 weeks to see if hematomas hav grown or shrunk...thyroid... Care said my tsh of 2.8 was normal and didn't need treatment dr g put me on 25mg thyroxine straightaway....although dr g does not exude the confidence and arrogance of som doctors I hav grown to trust his opinion over other doctors  

Just for the record Re Sher and steroids choice4 sent me a pm to say that she cycled with dr sher and he did use steroids just a different one ie dextamethozone


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## Ourturn (Oct 8, 2008)

Hi ladies 
HELP PLEASE! 
I think the test which shows matches between dh & I is not in yet? Anyone know if you can tell if I will need LIT? Know I need humira for unk's but Dr G said dosage will depend on these tests. TNF alpha seems raised so I imagine I will need x4 inhections not 2? 
Been taking 5mg folic acid as a precaution but do I need B vits too? which ones and and what dosage? 
Any feedback appreciated?
Thanks 
Anna x

TB gold test - negative 
MTHFR - positive (heterozygous) for MTHR c677T mutation 
IMMUNOGLOBULIN A 2.50          g/l                        0.70 - 4.00 
NK Assay (% Killed) Panell 
Name Result      Units	Limits
50:1 29.5	    %	10 - 40 
25:1 25.3	    %	5  - 30 
12.5:1 *20.2	    %	3 - 20 
IgC conc 12.5  50:1** 25.3	    %	
IgC conc 12.5  25:1 17.3	    %
IgC conc  6.25 22.9 22.9	    %
IgC conc  6.25 25.1 15.7	    %
%CD3 *85.1	    %	60 - 85
%CD19 10.3	    %	2 -  12
%CD56 6.0	    %	2 - 12
%of CD19+calles, CD5+ *16.5	    %	5 - 10 
Notes ** >10% reduction in killing at each effector/target ratio

NK assayw/Intralipid
Name Result   Units 
50:1 w/Intraplipid 1.5mg/ml	21.3
25 w/Intralipid 1.5mg/ml 12.9

LEUKOCYTE ANTIBODY DETECTION 

Flowcytometry Negative 
(T-cells) IgM+ 1.0	  %
(T-cells) IgG+ 3.7	  %
(B - cells) IgM+ 26.8   %
(B-cells) IgG+ 12.3	  %

TH1:TH2 intracellular cytokine ratios 

TFN-aIL - 10 (CD3+CD4+)	*30.9          Ratio	13.2  - 30.6
IFN-gIL - 10 (CD3+CD4+)	8.5	  Ratio	5.8    - 20.5


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## niccad (Apr 28, 2009)

hi sobroody - I'm no expert but looks like you'll be needing LIT.
On top of this it looks like neither ivig or intralipids have bought your NK numbers down below the magic 15% for 50:1, however intralipids do look slightly more effective for you. DrG will no doubt suggest prednisolone, clexane, aspirin and gestone for your cycle.. along with intralipids (he will probably suggest a combination of intralipids and IVIG). Your TFN-aIL is similar to mine and he suggested 2x humira (although I decided not to go down the humira path). 
Not sure about the B vits... sorry.

Good luck

BP - I hope that things are going well and you're getting loads and loads of lovely mature eggs... xxxx

Nic x


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## Ourturn (Oct 8, 2008)

Shelly - thanks. What a bummer! Suprising considering I have been pregnant x7 times but maybe this explains why I have not been able to hold onto them. 
My NHS IVF tx is Jan, Feb...down regulating 20th Jan stimming from 2nd Feb, which means I need to get to Athens this month doesn't it? 
Will it be easiest to get Mr G to arrange the appointnent with Athens? Guess I need to wait for the DQ alpha results 1st? 

NHS will not ket me move tx back..have tried, its because I am over their age limit 

Niccad - why would I need gestone? I have been been on steroids heparin, high dose folic acid and aspirin already 

Thanks a million 

Anna x


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## bankie (Dec 27, 2007)

Hi sobroody,

I think that Dr G will prescribe you gestone for your CD19+5+ which are a little high.  Mine were 48     and although I've never had a problem with early bleeding etc, he told me that he would like me to have extra progesterone.

The CD19+5+ attack the body's hormones, so I guess he prescribes extra gestone in these cases to air on the side of caution.

bankie


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## Saffa77 (Feb 6, 2008)

Hiya ladies

Yes bankie that is correct cos I asked Dr the same question about Gestone  and its for high CD19+5 -  mine were only 1% high at 11, and the reason why he prefers gestone is because it anticipates even absorption thorughout the day. 

S


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## niccad (Apr 28, 2009)

Sobroody - as everyone else has answered it's for the high CD19+5 and you start taking it after EC so no mad rush  
Nic x


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## Ourturn (Oct 8, 2008)

DQ alpha results are in 
DH 1.2 & 4.1
Me 3.1 & 4.1 

Does this mean donor LIT is needed

Thanks again ladies 

Anna x

PS Have a phone consultation booked with Dr G Friday lunch time


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## Ourturn (Oct 8, 2008)

Shelly - thanks again 
x


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## itsmyturn (May 30, 2009)

*saffa77* - last nite i had to dash off not datch - had to drive to meet my dp in n/london,we had a consult this a.m at harley st for something else(amazing and well worth the £). I don't know anything about the politics behind lit, frankly i don't care....

'what if its too late then?!' i think you answered your own question

*mag108* - hi yes i like dr g's personal touch, my only concern was that if he was over stretching himself.

*jolie* - hi again, hey no offence taken.Frankly,if he treats everyone the same thats all that i was asking,then i know its not personal.

*lalaby123* - hi again, thx for your example, it was the kind of input that i was asking for...glad you heard from choice4, she's amazing and very knowledgeable.


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## bluprimrose (Sep 1, 2009)

hello all!

how are you today?

a quick me post if that's ok.... well i got 15 eggs, 11 mature, 10 fertilised... so am quite happy - just need them to divide well now & then need one to stick - that's where i fall down!

lol to everyone

bpxx


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## Sprinkles (Nov 6, 2008)

Great news bp, lots of


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## lalaby123 (Sep 21, 2008)

Well done BP that's a super number u will hav plenty for the freezer!!! Fingers crossed for the next stage xxx

sprinkles glad u haven't left us completely hope you are feeling better and will be able to enjoy your bday xxx


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## bluprimrose (Sep 1, 2009)

thank you sprinkles and lalaby .

i normally don't have lots of good embies on day 3, last few have had 3 which they put back - but am praying it's different this time and get to day 5...

bpxx


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## Han72 (Feb 15, 2007)

Hey BP  - fab crop honey!        that they continue to develop well and that you get blasts AND frosties  

Hi everyone 

xxx


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## niccad (Apr 28, 2009)

BP - great news and    that loads of them make it to blast and that there's some frosties too...


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## Jofie (Aug 7, 2008)

Great result BP! Fingers crossed and loads of      that they do well and you get the three you need and a few to spare


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## ells (Mar 19, 2008)

BP well done you! Here's a little dividing and growing dance for your little embies;

[fly]                  [/fly]

Bankie, hunni, how are you feeling?

Hows is everyone else?

Welll it looks like I have got the humira, I am just waiting to find out how I am going to get it either NHS or BUPA! Will let you know how I get on, hopefully should know tomorrow.
Ells


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## Cozy (Jul 17, 2008)

BP, good luck, I hope your eggies are good and strong   

Lalaby, your inbox is full... someone is trying to pm you...

Cozy


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## Louiseb26 (May 13, 2009)

Hiya Ladies

Hope everyone is doing OK?

Ells - I noticed from your post that you said your waiting to find out if you can get Humira on the NHS or BUPA.Is that something you can get from your GP?

Lou xx


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## Zeka (Mar 7, 2009)

Hi ladies, I had a cons with Mr G on Monday and wonder if you can help with some info re his costs. I am having a break from IVF and am considering IUI with him for which he charges £650. Can you tell me whether he charges a consultation fee everytime you see him (eg if I am going for a scan, the price of which is included in the IUI cost, does he also charge a consultation fee on top of this)? 
I've been to places that do, and places that don't so would welcome your feedback.

Also, what is the earliest you can have bloods done during the week?

Thanks, 
Zeka x


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## ells (Mar 19, 2008)

Hi Lou,

My GP wont give it to me unless my consultant puts it in a letter to him as it costs £800 per 2 injections and it is a very strong drug.  I am hoping that I will get it one way or another so I dont have to pay IYSWIM   .

Hi Zeka, sorry hun cant answer all your questions but one of the other ladies will be along soon I am sure.  But... we have paid £90 for each follow up consult with Dr G without having anything done.  I think he starts seeing people from 8.30am, but you need to get your bloods done before 2pm on Mon, Tues or Wed if you are having immune bloods as they have to be couriered by a certain time to get to the RFU.  Hope that helps.

Cozy, how are you hunni?

Ells


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## vw22 (Jul 27, 2009)

Hi everyone, I am usually on another post on the DE thread but am needing some advice and thought maybe you all could help?! You can see from my signature whats been going on, and now I am thinking of the immune testing route before attempting anything else...

You are all amazing at what you know and how much research you have done...I am totally baffled at all the science! So I won't waste your time with any obvious questions but some basic start off suggestions would be great at this stage.

I am based in Spain and have the opportunity of an appointment with Dr G on the 21st. But I sort of feel like I don't know enough yet about the tests and then the procedures following the results and even if I am ready for the results....so does anyone think I would be better to wait and get better informed first or just turn up and start the ball rolling? Also, do you think it would work if I didn't go in at all (saved the money for tests!) but did a phone consult, got the bloods organised in spain and then had Dr G go through the results and treatments later. 

Its all so stressful enough and the thought of flying in and out of London with more expense and time may just make it painfully worse.

Any and all suggestions welcome...I just don't know enough about this process to understand how important it is that I actually have to sit in front of another consultant when I could be positively getting bloods etc done in an easier way...

Thanks everyone...

V


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## Jofie (Aug 7, 2008)

Zeka - I have just done IUI with Dr Gorgy - no, he does not charge a consultation fee when you go in for a scan, that's included in the £650. He will want bloods every time you see him during the cycle though. Sorry, can't remember the exact prices for those. Think E2 is £35. 

He charges £55 per vial of Fostimon / Merional if you are having a medicated cycle. You can get these a lot cheaper if you ask for a private prescription from him.


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## Zeka (Mar 7, 2009)

Thanks Jofie, that's helpful. Thankfully I have some meds leftover from previous IVF cycles so will just have to top these up.  

Do you know what time you can have bloods done? .(...wondering if its like the ARGC where the bloods place opens at 7.30am so you can get it done before going to work? Or do you only have bts the days you are due to see Mr G?)

Roughly how many days did you have to have to see Mr Gorgy during your IUI cycle and how many bts and scans does he advise? 

...sorry for all the qus, just trying to get my head around it all, so many thanks for any insight you can give!

Zeka x


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## bankie (Dec 27, 2007)

Hello ladies,

BP - I must congratulate you on a fabulous haul of eggs!!     I'm sure from that selection you will have some great ones to put back and I'm     for blasts for you honey.

Jofie - Wishing you so much luck for test day hun, I've got everything crossed for you and    that you get the perfect early Christmas present.

I've been doing quite well on the 2ww until today - have been busy with work but today felt a bit of a wobble creeping in.  I know it's just cos I'm going into the 2nd half of the 2ww and realised that in a week's time I could once again be in the depths of despair.  After 4 IVF BFNs in a row sometimes it's hard to believe that I will ever get a BFP.  I've tried pasting on my shiniest smile this afternoon and will have to put my head down and get on with it.

Hi to Saffa, niccad, nix, sprinkles, diane, ells, zeka, louise cozy, lalaby, pinpin and all the other lovely ladies.   

bankie


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## Jofie (Aug 7, 2008)

Thanks Bankie  . OTD is Saturday but I'm not hopeful  - just want to get it over with now so I can move forward (again). Have been wobbling myself quite a bit this week, it's felt like the longest week of my life! Sending you lots    and   to take into your 2nd week. 

Zeka - I've only ever had to get bloods on the days I've seen Dr Gorgy for a scan, which is usually every 3 days, or every 2 days as you get closer. So I don't know what time they open I'm afraid. He marks them 'urgent fax' so he gets the results within 4 hours and then you call him or vice versa on the same day in case he needs to adjust what he said at the scan. I think I was scanned and had blood taken 4 or 5 times before the IUI. Oh - I also had to get my progesterone checked at one point because my estradiol had dropped - that was £70. 

vw22 - hello and welcome. Don't really know what to suggest - I think it really depends on whether it's possible to get all the blood tests done in Spain. Do you know what you need doing? The lab DrG uses is all set up to get them done, so it's straightforward from that point of view, but it does take several days to get them all back, so presumably you'd have to have either your initial consultation or your follow-up on the phone anyway? I'd lean towards an initial phone consultation - others who live long distance and have done that themselves will be in a better position to advise you. 

Hi to lalaby, ells, cozy, niccad, sprinkles, mag, diane, nix, pinpin and everyone else - sorry, brain gone. I have stinking cold.


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## ells (Mar 19, 2008)

Bankie and Jolfie NO MORE WOBBLES     sending you lots of extra PMA                                                     

Ells


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## bluprimrose (Sep 1, 2009)

thank you all - hope your dance & pma vibes mean i'll have some good news this morning... will be waiting for the call to see how my ten fertilised eggs have divided - fingers crossed.  is no part of this journey easy and without some waiting time?!

well, my ohss is here - not as bad as it has been but worse than last time.  just hope it doesn't get any worse to jeopardise et.

jofie & bankie, i hope you're not going too mad - but totally understand if you are!

love to you all.

bpxx


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## Saffa77 (Feb 6, 2008)

wow BP you sure have a crop there all the best!!!!

Ok so I got a call from Dr G today out of the blue saying that the lab called to say that there was not enough bloods to do some antibodies something beginning with A and dont know what else - can anyone help me as to what they could be.  These are the tests I have done:

DQ alpha and LAD
NK killer Essay
TNF etc
MTHR and factor V leiden 
think thats it?  I did all the chicago ones that everyone normal does but says im missing some?  

Having bad luck with this lab firstly they could find DP's DQ alpha then they found it and now there wasnt enough blood for these other antibodies

Sx


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## pobby (Jun 2, 2005)

HI VW, I just tried to PM you but your inbox is full
pobby x


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## niccad (Apr 28, 2009)

Zeka & vw22 – sorry – I can’t help with your questions
Saffa- again – not sure unless he was saying TN alpha to you??

Bankie – sending lots of PMA your way     … the 2nd week is so so much harder… will be thinking of you x
Jofie – good luck for tomorrow    . 

BP – hope your little embies are dividing nicely… praying for some lovely blasts for you x

I got some of my follow up results through and wanted a bit of advice… when these were done I’d had intralipids, ivig, 25mg of pred, gestone, clexane (40mg) and aspirin…..  I’m still waiting for the TH1/TH2 results to come through… 
limits
50:1 9.8 (10-40)
25:1 7.7 (5-30)
%CD3 69.3 (60-85)
%CD19 6.9 (2-12)
%CD56 18.3 (2-12)
%CD19+ CD5+	7.2 (5-10)

My results before any tx were  CD56 19.2% and for CD19+cells,CD5+ 20.3% … and the 50:1 was mid 20’s I think… Any clue why my CD56 hasn’t come down and what else I could do to get it in the limits? The gestone seems to have worked on the 19+5 one...

Any help would be really appreciated 
Nic xxx


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## Jofie (Aug 7, 2008)

Hi everyone,

 for me this morning  . At the moment I feel OK. It's disappointing, but I was prepared. I know symptoms (or the lack of) don't necessarily mean anything, but it helps me to think I can 'just tell'.   

Now at least I can have a break from all the drugs and take a few months before my NHS tx cycle to get my body in balance. Going to try ttc naturally in that time, with the Chinese herbs and acupuncture. Something I didn't realise before, but some of the herbs have blood-thinning qualities, as well as positive effects on the uterine environment and hormone balancing, which is interesting. I have an first appointment with a gynaecologist at the Royal Free this week and hopefully she'll agree to the hysteroscopy Dr Gorgy suggested I should have to look at the cyst in my uterus.

Not sure what to think about the immune stuff now. I do think the clexane and aspirin works well for me, so I'll definitely take those for my next cycle. LIT treatment did increase my LAD (B cells if not T cells anyway). Humira was a waste of money, and it's quite frightening to think about what we've spent so far on IVIG (intralipid is no good for me). The prednisolone didn't seem to do much at all  - I did get a cold this week, but DP has it a lot worse than me, without his immune system being suppressed! I am quite averse to taking pills over longish periods of time that I don't actually 'need' so I might not bother next time and just go with IVIG. 

Of course, all the drugs would have been worth it if this had worked, and I'm glad to say I haven't had horrible side-effects from anything (except the progesterone this week) but for now I'm forced by financial necessity to try a more natural approach to reducing my levels. I'll wait and perhaps get re-tested before my next tx cycle just to see where things are. 

I feel fairly positive about trying the 'natural' approach for a while for some reason. I think it's because I've learned so much in the last to years and made loads of headway improving my health compared to where I was before I started tx. When we were first advised to go for IVF, I'd been ill for a long time with an undiagnosed thyroid condition, been through loads of surgeries and was constantly fatigued and in chronic pain. I was more than happy to turn myself over to the experts and all the technology that could possibly help. But now I think I may have not much less of a chance of success than other women my age who've never been pregnant and have no idea what all the possible issues are. I don't see that a few months is going to make too much difference anyway.  And if it still doesn't work - well, at least we'll have tried everything in pursuit of 'one good egg'. 

Just wanted to say thanks for the support and good wishes you've given me over my last two tx cycles with Dr Gorgy and the incredibly helpful information you've all shared. This is a fantastic thread.   . Sending     to bankie and BP and everyone else in the middle of tx / waiting to start, and to lalaby, pinpin and the other pregnant ladies.  

niccad - sorry I can't help, but I'll be interested in the answer myself.


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## bluprimrose (Sep 1, 2009)

oh jofie, i'm so so sorry     .

but am glad you're sounding positive for the future and have a plan - i find a plan always helps.

and ttc naturally sounds fun (never been lucky enough to ttc naturally myself and can't even remember the fun bit of doing what you need to do!!    iykwim!)

well i've been awake half the night - the prednisolone is making me wake up wide awake at random times in the middle of the night which is horrid - i'm so tired.

am just waiting for the clinic to ring to find out if for the first time every i'm going to day 5 (monday) or if i'm going in today at 11 for et.  have acu all booked, just need the call!  yesterday i had ten dividing embies - 3 grade 1, the rest grade 2 so it was 50/50 then that i'd make it to day 5.

    again jofie.  hope to still see you round these parts!

bpxx


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## Newday (Apr 27, 2005)

Niccad I thought the gestone was just instead of utrogesten or cycolgest is it for sometjhing else? I will be interested in TNF's did you have humira?
dawn


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## Sprinkles (Nov 6, 2008)

So sorry for your BFN Jofie its pants isnt it.  You sound very focussed and organised, take care of yourself and good luck with the hysteroscopy xxx      

niccad sorry cant help with your question, but after my first round of immunes my CD19+5+ came down from 11 to 1 without any gestone, but think that was the pred, intralipids and humira I had at that time.  However my CD56+ only came down 2 points as well.  Also my CD3's went up by 9 points taking me over the limit.  I think because the intralipids, humira, steriods, etc etc all have an effect on everything it seems its hard to pin point which drug actually worked for which set of cells.  I didnt know until going to DrT for LIT that that can actually reduce TNF cells as well as raising LAD levels.  

Good luck BP x

Bankie hope you're ok luvvie and you're staying strong x


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## berry55 (Sep 4, 2008)

Hi girls,

Just had my call from dr gorys to confirm my appointment on monday! I'm so so nervous now. Yesterday i could feel something on my lip and now 2day i have work up and my lip has  doubled in sixe (bottom right part of lip) and it looks like i have been punched. This happens a lot 2 me, nearly every winter. But this year its happened about 3 times already. I have also had these large boil type spots on my chest, not pussy or anything. Any ideas if this could b connected to immune issues? I'm starting to think i have something else wrong with me??!!! 

Sorry for no personals, my life is all upside down at the moment. 

Jofie - i'm so sorry about ur bfn  

xxxxxxxxxx


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## siheilwli (Jan 18, 2006)

Jofie - so sorry for your BFN

I'm currently PUPO, one very precious embie on board since yesterday. Dr G's transfer was brilliant. Resting up now.


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## bankie (Dec 27, 2007)

Jofie I'm so sorry hun, we had all been hoping for good news for you.      It's great that you have accepted the news so well and can move forward with your natural ttc plan - I wish you all the best with that.      I think I need to take a leaf out of your book if it's bad news for me too next week.  At the moment I can't even bear the thought of a 5th BFN in a row, but know that I need to try and get my head round it in case it happens.

BP - Sending you and your embies lots of    .  I hope that you make it to blast hun.

Sprinkles - special    to you hun.  Thanks for keeping me (semi) sane over the past week!!

 bankie


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## bluprimrose (Sep 1, 2009)

hello ladies

well i'm officially pupo! have 3 embies on board - 2 8-cell grade 1+ and one 7 cell grade 2.  there are 6 left which they are taking to day 5 (there's only one very good one) and if any blasts will freeze.  they recommended that rather than wait 'til day 5 and i trust them.

so just in the waiting room now waiting for my post-transfer session before going home to lie on my sofa all day!

sorry for lack of personals but sending love to you all.

bpxx


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## ells (Mar 19, 2008)

Jolfie     I am so sorry hunni.  Its good that you have a plan and have something to focus on.  Keep in touch hun.

Siheilwli, congrats on being PUPO, make sure you rest up and give that precious cargo a head start   .

BP, thats great news hun, hopefully your remaining embies will work hard and you will have some frosties   .

Bankie, how are you feeling hun?

Hope everyone else is okay?

Well I got the call from my specialist yesterday evening, he is going to give me the humira but I think I might have cocked up with BUPA as they are supposed to be cover the price but i said I could do the injections myself   and apparently if thats the case they wont cover it.  Hopefully i will get a procedure code on Monday from the secretary and that will be okay, I will say I got it wrong and I have to have a nurse do the injections   .  If that fails I will get him to write me an NHS px - he's done that before.  He's going to give me 3 injections, Dr G thought I might need 3 or 4 so hopefully that will do the trick.  Fingers crossed ladies that i can get it paid for or cheaper one way or another!!!

Have a great weekend everyone, we are off on holiday next week not going anywhere but will be nice to chill out.  Seeing Dr G on Tuesday for my hysteroscopy - bit scared about that - is anyone else going to be there.  Our appointment is at 11.30am.

Ells


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## Ourturn (Oct 8, 2008)

Jofie - I am sorry hun     Don't despair though, many ladies go on to get natural bfp's after a failed cycle due to all the immune treatment they had. There is a natural spray you can buy which is supposed to help reduce nk's, can't remember the name.

Ells - how come you can get humira from your GP? Mr G said nice only recommended it for severe arthritis?

Blue Primrose - congrats on being PUPO! What an amazing crop you had there. Fingers crossed for you     Are you taking the steroids in the morning? I do and do not have a problem sleeping after the first couple of day 

Sihielwili - congrats on being pupo    

Bankie - this will work for you this time    

Berry - your lip thing sounds like an allergy or infection? 2 years ago the upper left part of my lip swelled up...gp tried antib's. In the end I had a biopsy and it was leishmaniasis..a parasitic infection! You must get it checked out. 

Saffa -what a pain... make sure you don't get charged again! 

Niccad - sorry can't help as I am still v new to this. But re the limits Mr G said these apply to cancer patients not women ttc. 

Hi Ells, Sprinkles, Nix and everyone I've missed.

We had our telephone consult with Mr G on Friday to go through the results. When I asked if these results explained my recurrent losses he said yes. At least I have an answer after all this time. I asked what was the point of ivig if it wouldn't get my numbers down to 15%...he said it was still a good reduction and that might be enough for me. He wants me to do both intralipids and ivig. He said I can have LIT with dh as our numbers are not an exact match (0501 & 0505). He has e-mailed Armstrong and Dr T saying I needed lit urgently. I will follow up with each directly on Monday, but someone here said Armstrong is fully booked till March. Will also need clexane, humira (x2) steroids &  gestone...he is posting the prescription though. Will see what I can get from my go (who is very supportive) and private health (unlikely to get anything bar telephone consults) 

Mr G was not very concerned about me being positive for MTHR...he wasn't even going to sugest high dose folic acid...just a good diet? A have been taking it anyway as my clinic put me on it as a precaution.

The good news is DH is on board and convinced that I have real immune issues...he didn't even want to see Mr G because our nhs consultant said it would be a waste of money etc etc. 

I asked if it was worth getting my thyroid checked via GP due to my elevated, he said yes. 

Complicated isn't it! 

Anna x

PS QUESTION - could I have LIT in greece x2 weeks apart rather than one month due to the tight timescales with my ivf tx?

Thanks 

Anna x


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## ells (Mar 19, 2008)

Hi Anna, 

I hope you get your LIT sorted out, I havent started panicking about it yet as we havent got the dates of our next tx but I am sure that after next week I will be panicking!!!!    I have a feeling that you wont be able to do the LIT with DR T 2 weeks apart, I am sure that someone else asked a while back and he wouldnt do it 2 weeks apart, but I could be wrong.

The reason I should be able to get Humira from my GP is that I have crohns disease and its used as a tratment when all else fails - thats where I am at the moment - but also the theory is that it will bring everything under control and then they can give me this other drug which will keep it managed   .  

How is everyone else?  How are our PUPO ladies?  How are our pg ladies?  I hope that you are all keep well and warm   .  

I hope everyone that inbetween tx is okay   .

Sending lots of       to everyone who needs them.

Have a lovely Sunday.

Ells


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## Ourturn (Oct 8, 2008)

Hi ladies 

Looking at the diary and it looks like it will be impossible to get both Lits done in Athens before my ovf tx

Would this work?

Lit with Dr T Tuesday 26th Jan 

baseline scan Tuesday 2nd Feb 

week of ec/et w/c 15th Feb 

Lit with Dr Tuesday 23rd Feb 

OR book in for LIT with Dr A for start of March by which point I will know if IVF has worked? 

Help! 

Anna x


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## Jofie (Aug 7, 2008)

Hi everyone,
thanks for all your good wishes. It's really appreciated.  

BP - fantastic news about being PUPO with great embies. Keeping everything crossed for you . If only TTC naturally was actually fun...I think it only is for those  couples who fall pregnant in the first few months of trying. Going to try my best to keep the stress out of it this time around...I'll keep dreaming anyway.  

Sprinkles - thinking out my Plan B is the only thing that keeps me sane at times like this. The bad news focuses my mind - it's the uncertainty I can't stand. I had some real lows in my second week this around because I'd had some symptoms up to 8 dpo which made me think it might just be working. I'm just glad I've had this thread and you fantastic people willing to put up with me wittering on. 

Berry - . I hope you're feeling a bit better today. Hives and inflamed lip definitely sounds like it could be immune-related to me. I hope you find out what's going on.  

sihheilwli - congratulations on being PUPO. Take it easy, hope the 2ww doesn't drive you too mad. 

bankie -   for saying such nice things, but as for you, don't think like that! You need to stay positive that the immune treatments this time will do their stuff. You have 2 great embryos on board and quality is the most important thing. You'll get there    .

ells - best of luck for Tuesday. Don't be scared - having had EC and ET with him, I would trust Dr G over most other doctors when it comes to any of these horrid procedures. 

sobroody - thanks for the tip about the spray. I'll have a look around for it. It's good that you don't have to have donor LIT, one less thing to worry about, and great that your OH is on board.  

I probably won't be posting here as much until my next tx at the Homerton when I'll have immune tx with DrG again, but will be reading and sending positive thoughts everyone's way. Thanks again everyone for all your support


----------



## berry55 (Sep 4, 2008)

Hi girls,

Just in my hotel room in London. I'm nervous/excited for 2morrow. I keep thinking "this could be it now, this could b what i need for us 2 b able 2 start our family" London is so busy at the moment, had a little wander around oxford street 2day. I'm so tired i just wanna sleep. I'm a bit down about myself at the moment. Its just sort of clicked in my head (well my eyes) how much weight i have put on and i'm so so upset about it. I look so round, its so horrible. I'm just feeling very insecure too. DH is being so so nie 2me and he said i have put a little on but i dont look bad at all. But i know he is just saying that  I need to try lose about 6-7 pounds............... i find it tooo hard to even exercise!!!!

sorry for the moan xxxxx


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## mag108 (Jun 28, 2008)

BP: really glad you got such a good crop, and that you have 3 on board, good luck with the next 2 w. 

Jofie: I am really sorry to hear that it's not worked out. Your attitude seems very balanced. Good luck with ttc naturally. I too do acu with herbs (for m/cs) and have noticed a positive effect already, tangible differnece in AF and pain

Cozy: for you lots of +++ for your tx.  

Bankie: you are doing really well. It's such a trauma the 2ww  

Nicaad: sorry I cant help you hun, this immunes stuff is new to me and still a bit baffling.

Sihielwili: big congrats on being Pupo 

Anna: really glad the appt went well and you feel like there is a plan of action. Cant answer the question on LIT x 2 wks apart but I am pretty sure I read about someone doing that or that being an option
http://www.fertilityfriends.co.uk/forum/index.php?topic=95742.975

I was at Dr G's on Thurs pm for my hystersalpogram ? OOOOH was it uncomforatble but I was very very brave. The out come is no uterine probs but the right tube is damaged. A lap + dye test 2 yrs ago did mention that the dye didnt go down the right tube. Cons said he thought it has spasmed and in his opinion it was fine. (interesting.... as he may have actually put me on an NHS IVF list at that pt if he had come to a different conclusion, I have a big Q? over why I never got put on a list and his answers not very helpful...).

I am not too upset about it, though I do wished I had know 2yrs ago...(I would have done IVF sooner for starters) yadayadayada.

I was so so impressed with Dr G. Gave me loads of time and was very considerate of my case. (I know we have all had diff experiences seeing him and my 1st appt I didnt find easy).

xx to donkey, ells, sprinkles, Saffa, nix, diane, zeka, louise, lalaby, pinpin
and anyone else I have forgotten


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## Donkey (Nov 24, 2007)

Anna
4 weeks apart is better but I’m he does do 2 weeks if that’s al you can manage.  I know he has a clinic on 29th Dec…you could then go on the 12th or even better the 26th Jan.

Hi to everyone else, I’ve not been posting much but I am reading.

Cozy so great to see your levels so high.

BP congrats on being PUPO

Jofie, so sorry to read of your bfn

Lots of love 
Donkey xxxxxxxxxxxxxx


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## Ourturn (Oct 8, 2008)

Donks - can't do the 29th   

But Shelly has responded and is going to book me in

Thanks 

Anna x


----------



## Donkey (Nov 24, 2007)

Anna that's great, what date are you going?
xx


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## Ourturn (Oct 8, 2008)

Donks the 12th and possibly the 26th. 
Which flights are you taking, BA from Heathrow?
x


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## ells (Mar 19, 2008)

Afternoon ladies, just popping on to see if anyone will be at DR G's tomorrow?  I have my hysteroscopy at 11.30ish and feeling a bit   about it.  

Hope everyone is okay?

Bankie, how are you doing hunni?  When is OTD?  Have you lost the plot yet   , I always find the second weeks an absolute nightmare. Hope you are holding out okay.

BP, how are you?  I hope that you are still chilling and relaxing.

Lalaby, how are you?  Are you having a scan this week?

Pinpin how are you doing?  I hope there have not been any more   moments.

Cozy, hope that you are okay.

Deegirl, hope everything is okay.  

Jolfie, hope that you are doing okay too and that everyday you feel a bit stronger.   

Nix, how are you?  Hows the weather en France?

Niccard, hope that you are okay to hunni, did you get answers to your questions?

Anna, great news on sorting out the LIT, well done!!  One les thing to stress and worry over.

Sihielwili, how are you feeling?  Sending lots of    

Mags, sounds like you had an interesting day getting the results sorted out.  At least you know now.  I have got myself a whole load of painkillers sorted out so that hopefully I will be okay to walk around the shops afterwards tomorrow   .

Donkey, hope you are okay.

Berry how did you get on today?  Exciting times for you.

Sprinkles how are you    ? I hope that you are feeling stronger.

Cath, Omni and Choice hope you are all okay and still reading.

Hi to everyone else     .  

Ells


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## bluprimrose (Sep 1, 2009)

hello all

ells i wish i was taking it easy!  i did on saturday after et - had acu and headed home to the sofa where i stayed all afternoon and evening.  but have been busy since - not been doing anything very strenuous, but definitely not been horizontal how i'd like to have been since et.  my dad's visiting from abroad - and in a wheelchair, so there's lots of looking after, preparing meals, driving around etc.  but that has just stopped and am on the sofa again!

how are you?  i am going to be popping into dr g's tomorrow - be lovely to say hello.  should be there roughly the same time - will know for sure later as i have to work out exactly what time i need to have a blood test at the doctor's lab.  are you under ga for your hysteroscopy?

bankie, how are you?  how have you been passing the 2ww?  the second week is just a killer isn't it?

is anyone able to just totally relax and do nothing on their 2ww?  i did last time - but at the same time i had the world's worst flu and was coughing my guts up for days after et.

lalaby - hope you and your little ones are doing just fine.

hope everyone else is ok - jofie sending you    .

in fact love and     to all.

bpxx


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## siheilwli (Jan 18, 2006)

Hi girls,
hope you're all ok. I'm doing great, feeling really good and relaxed at the moment. 
I'm having a nightmare trying to find 100mg gestone at the moment - did anyone else have to have them in 50mg size?

And my flights to Athens on the 29th (with BA!!!) seem doomed with these announcements of strikes....... anyway.... BREATHE... STAY CALM & RELAXED !!!!!!
Cat
x


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## Zeka (Mar 7, 2009)

Siheilwli, I heard that there was a manufacturing problem with the 100mg Gestone and that is why most of the pharmacies only have 50s over recent months. ....I got mine from the Wellbeck as I believe they were charging the same amount for 2x50 as 1x100mg (whereas John Bell & Croydon were charging double when I checked in November)
Zeka x


----------



## siheilwli (Jan 18, 2006)

Thanks Zeka, will phone wellbeck


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## siheilwli (Jan 18, 2006)

Just in case anyone is having the same search as me, there doesn't seem to be any 100mg of gestones available at the moment, which means you effectively pay double as the 50mg are the same price as 100mg... also twice the jabs!! Ouch!  
Kind guy in Wellbeck said he doubted anyone now had any stock of 100mg gestone, otherwise it would be very old.


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## Zeka (Mar 7, 2009)

Siheilwli, You can pull up two vials into one syringe to avoid injecting twice...once a day is certainly enough isn't it! Just need to make sure you have syringes larger than 2ml. I found the 5ml ones best as the plungers aren't as stiff.


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## mag108 (Jun 28, 2008)

Hi
Sobroody: we will be there on the 12th together!
I am going out the day before but coming back that day, from gatwick so I think its easyjet but will see you at Dr T's!

Ells: hope it goes ok. To be honest it was all bearable, he is v gentle and v considerate. I felt fine for the shop!!!!! Oh us ladies!

Sheliwell: good for you!

BP: well at least being busy takes your mind off things!

hi and xxx to everyone else.
Had an interview today for a professional development prog. Not sure I did too good so having a glass of vino to make me fell better!


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## siheilwli (Jan 18, 2006)

Mag108 - enjoy the wine!
Zeka - is it any more painful to inject double the amount? 
Cat
x


----------



## Sprinkles (Nov 6, 2008)

Ells good luck for tomorrow hun xxx

Bankie your inbox is full hun


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## Zeka (Mar 7, 2009)

Cat, I've only had gestone on my lsat cycle so have nothing to compare it to but as long as you inject really slowly it doesn't hurt at all. I found it best to lie on my tummy and wiggled my toes (something to do with helping the nerve endings i'm told) whilst DH injected - i found it too hard to push the plunger down on some of the syringes so gave up doing it myself. It made my bum a bit numb the following day for about 24hrs but to tell you the truth I was most frecked out by the fact that a needle that large just disappears without feeling anything! If you are injecting yourself there are lots of vids on youtube that are helpful (if you haven't injected there before)
Zeka x


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## berry55 (Sep 4, 2008)

Hi girls,

Just wanted to send u a post 2 let u all know how yesterday went. I am in th train coming bk come just now. 

Yesterday went well, we spoke about what I thought we would speak about and coverd mmostly everything that had 2 be discussed. DH and I got sent for blood tests (dh had 5 and i had a whopping 14! there were more that 14 but the nurse said 14 large and she didnt tell me how many  small, i think there was about 4 or 5 small too. - when i say large i mean double the size that the GP usually takes!!) So now its just a waiting game for us. The Dr told us that the reason for our failures could b 1 of 3 things. 1) an abrnormality in the womb (which i have had blood taken for to confirm- but as i had a hystoscopy (spelling) and it was all clear it looks like that should b ok, however, if the bloods all come bk clear then i have to have a womb biopsy as there must b a problem. 2) a chromasonal abnormality (dh has had his check and his are normal, we r waiting on my results from GP) 3) An Immune Issue (which i think it is  - bloods will confirm and then hopfully i can get the drugs to fix it ASAP and presto a baby will come!!    

Hope you all are doing ok, i need to read up on all the posts as i have not really been on FF much! Take care all 

Berry xxxxxxxxxxxx


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## bluprimrose (Sep 1, 2009)

berry, glad all went well - sounds like you have all bases covered! 

which hotel did you stay in in the end?

ells, hope all goes well today - was at dr g's half an hour ago and now 3 doors down about to have bloods taken.  we're probably just feet apart!!

bpxx


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## berry55 (Sep 4, 2008)

blueprimrose- we stayed at the raddison edwardian, it was a great location. I wouuld highly recommend it. 

I met a girl at the blood lab from FF, i cant remember what her name was...... r u out there lol xxx


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## berry55 (Sep 4, 2008)

Hi girls,

I'm just home and i popped into my GP 2 see if my level 1 tests were back yet.... most of them are... yey!!! 

The results have all came back normal, but i was wondering if u would b able to help me cos i dont know what is what from my list. The list i handed out 2 my GP is this...

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.Kartotype test.

I know my kartotype test is not back yet. But would u b able to help me match up whats what with the rest plz. I will typ what my results r and in brackets what the range says its to be. The results r as follows....

Urea - 3.8 (2.5-6.6)
creatinine - *54* (60-120)
eGFR(/1.73m2) - *>60*
sodium - 140 (135-145)
potassium - *3.4* ( 3.6-5)
Bilirubin 13 (3-6)
ALT *56* (10-50)
Alk.Phos 50 (40-125)
Albumin 45 (35-50)
total protein 74 (60-80)
TSH 1.2 (0.2-4.5)
Free T4 14 (9-21)

IgG 9.92 (6-15)
IgA 1.23 (0.8-4.5)
IgM 0.77 (0.35-2.9)
prot. E'phoresis No evidence of paraprotein band.

Haemoglobin 151 (115-165)
Red Cell count 4.93 (3.8-5.
haematocrit 0.441 (0.37-0.47)
mean cell volume 89.4 (78-9
white cell count 4.4 (4-11)
neutrophil count 2.08 (2-7.5)
Lymphocyte count 1.93 (1.5-4)
Monocyte count 0.31 (0.2-0.
eosinphil count 0.06 (0.04-0.4)
Basophil count 0.05 (0.01-0.1)
Platelet count 210 (150-350)

Kaolin Clotting time ratio 0.68 (0-1.1)
Dil RVV time ratio 1.00 (0-1.09)
Anticardiolipin IgG 0.9(0-13.3)
Anticardiolipin IgM 0.5(0-9.
ATIII activity 1.14 (0.67-1.3
Total Protein S Immune 1.00 (0.64-1.54)
Free Protein S Immune 0.87 (0.61-1.3
Prothrombin 20210 G to A Homozygous negative
Factor V (Leiden) Homozygous negative

Thanks for the help

Berry xxxxxx


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## Donkey (Nov 24, 2007)

Evening

Anna, on the 26th DH and I fly with easyjet from gatwick, going out monday and back wednesday (had an email they cancelled the tuesday evening flight).  We are staying at the Athens Gate.  In Feb I am going on my own and going from Heathrow with BA, all in a day.

Berry sorry I don't know much about level 1 tests, but they can all be 'clear' and you can still have immune issues...sorry 

I can't believe how cold it is,  dh's weather station predicts snow!!!

lots of love
donkey xxx


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## ells (Mar 19, 2008)

Evening ladies,

BP I am sure we must have been feet apart. Where you sat on the sofa by the door?  I was with my DH and had to keep going to the ladies?

Berry, your level ones look okay but as Donkey said that doesnt mean that you dont have any 'issues' .  It does look like you dont have clotting issues though which is good hun.  I am sure some of the other ladies will be along soon to give you a more comprehensive view.  I know what you mean about lots of vial - I thought we were going to need a blood transfussion last time   .

Donkey, we had snow on the way back home - it certainly made it feel very Christmassy, especially as we had White Christmas and Jingle bells playing on the radio.  I love the snow its great!!!

Sprinkles, how are you doing hunni - thank you for the well wishes. 

Hope everyone else is okay, lalaby hope you are okay sweetie   .

AFM, well had the hysto thingy and     ooooouch!  It really really hurt, I was very brave even Dr G said I was brave.  He thought that I was going to faint at one point   - I always have probs with this due to my crohns   .  Any hows about 45 mins later... Dr G said that I have a blocked left tube and a v slight PC right O but didnt think it would be a prob.  He said my womb was normal - phewee!!  My left ovary was hard to see and was really painful everytime he was looking for it, dont know if the fact I have a blocked tube would make it more painful or not   .  I have to email Dr G with our treatment plan once we have it so that he can plan the immune tx for us, he also told me to book with PA for LIT asap and if I had any probs getting an appointment to let him know. We are prob going to need to have the LIT in late Feb/beginning of March but I will know after tomorrow as we have our set up appointment at 2pm.  Do you know the most stupidest (is that a word   ) thing - I managed to put my neck out when on Dr G 'couch' when he was doing the hysto  so really struggled to go shopping and walk - how stupid   it has been agony - its okay when I sit and stand still.  So I have booked myself in for an emergency massage tomorrow morning.  Off to go and take some painkillers before bed.

Hope everyone is okay, lots of       to everyone,

Ells


----------



## lalaby123 (Sep 21, 2008)

Hi everyone just catching up on all the news 

Jofie I am so sorry     I am glad u r ok and have a plan in mind I am sure the effect of the immune drugs will stay in your system for a while will u hav immune treatment while trying naturally? 

Bp good luck with the 3 onboard woweeeeee what if all take? 

Siweili congrats on being Pupo really hope this is the lucky one for u

berry glad u finally had your appnt and got questions answered.... Re your level 1s u r missing no 4 and lupus and karytype othewise all good

ells glad u survived the hystero   and hope u managed to ^recover humira with bupa 

Bankie what news?

Cozy hope everything is going well with cycle

sprinkle is it happy bday yet

Hi to saffa niccad mag nix feisty and anyone else I've missed out 

No news from me which is good news I was feeling v down last week but feeling better this week and more hopeful with each passing week


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## bluprimrose (Sep 1, 2009)

lalaby, so glad you're feeling better.

no way all 3 will take - be lucky if one does.  if you look at my history it's a very long one!  it's the 4th time i've had 3 put back.  in fact i asked if they'd pop them all in so i could be the next octomum (or whatever 9 would be!!) so i could sell my story and pay for all my treatment! ;-)

love to all.

bpxx


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## Jofie (Aug 7, 2008)

ells -  lots of    for being ultra-brave. 

lalaby - so glad all is well with you. Anymore scans / blood tests in the offing? In answer to your question, I won't be having immune tx while ttc naturally. Mainly because it would mean having to be on prednisolone / clexane indefinitely, and I'm not prepared to do that for the long-term side effects. Also steroids and blood thinners do have an effect on hormones, which doesn't matter in an IVF cycle, but for a natural cycle everything should be in balance as much as possible. I'm researching like mad into supplements - sitting here chugging wheatgrass at the moment  -  I should PM Choice and see if there's anything I've missed! If a miracle happens, and I get a BFP, I'll test early as possible and then start clexane and have IVIG. 

Sorry for lack of other personals - at work and self-conscious about being overlooked. Hope everyone is doing well.


----------



## lalaby123 (Sep 21, 2008)

Jofie yes that sounds like a good plan. I am sure you are already on fish oils, also i have read nettle tea lowers immunes, as can acupunture and chinese herbs help balance things

I have my first midwife appointment tomorrow, am very concerned about my tightness of chest and short of breathness and want to know if this is normal or my body is reacting to all the drugs again....and another scan on Monday to see how things have progressed since two weeks ago....


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## Donkey (Nov 24, 2007)

Ells you are brave I refused to have a 2nd hsg as the first one was so bad!  I'm waiting for snow now so we can have a snow day off school tomorrow  

Lalaby good luck for your scan 

xxxxxxxxxxxxxxxxxxxxxxxx


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## bankie (Dec 27, 2007)

Hello ladies,

Just wanted to let you all know that sadly we got another BFN today.      It seems that even though I responded really well to Dr G's immune treatment, and had good embryos it still wan't enough.  After 5 BFNs I don't know if anything will ever be enough    .  We're going to take some time out and will probably try again in March.

I'll be lurking on the board but probably posting less for a while.  So, good luck to all of the cycling and pg ladies, and thank you all for your support.

 bankie


----------



## bluprimrose (Sep 1, 2009)

oh bankie, i am so so sorry, i really am.  this journey is so hard and so unfair.  after all the amazing things the doctors and embryologists can do to help us, once those embies are in we're all totally out of control of the situation and outcome and it's very scary.

i hope you'll be kind to yourself over christmas and thankfully you and your dh are there to support each other.

lol from a bp lying in bed full of cyclogest, clexane, prednisolone, aspirin, high-strength folic-acid - hoping it's all doing something...! xx


----------



## Bettysjourney (Jun 11, 2007)

Bankie -        
So sorry hun, a huge disappointment I know, it never gets any easier each time.  I do hope that the new year brings brighter times and a light at the end of the tunnel!

Lots of love
Betty xx


----------



## bluprimrose (Sep 1, 2009)

a question ladies if that's ok...

it's something i've broached before and although i'm trying to research into it myself and ask doctor's their advice, i can't seem to get a definitive answer.

can someone please tell me about the need to take vitamins b6 & b12 along with high-strength folic acid (5mg).  i am on 5mg of folic acid daily because i am homozygous to MTHFR and although i do usually take a multi vitamin tablet with iron daily, during my 2ww i don't, i just take a 'super' drink that is bursting with goodness.  am worried about taking any supplements during the 2ww apart from what i've been prescribed, but i keep reading about b6 & b12 with high-strength folic acid and i'm not taking the b's and hope my body's still taking in the folic acid ok.  

i have googled what foods b6 and b12 are in and i'm definitely getting b12 and i hope some b6 too.

thanks so much in advance for your help.

bpxx


----------



## lalaby123 (Sep 21, 2008)

Bankie          so so so sorry to read your news. It is so disappointing :-( all I can say is you are still very young and have years to try and our bodies change over time so your time will come you just have to hold it out.  

BP, can't help re the folic acid thing but I know that B6 and B12 are both crucial for embryo development so supplementing would only benefit them

AFM was in a&e on wednesday for tightness in chest and told i am unlucky and will suffer from it all throughout pregnancy, and then started spotting since yesterday. It is just such a roller coaster ride. I have a scan on monday so keeping fingers and legs crossed till then.....

love to all xxx


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## ells (Mar 19, 2008)

Bankie      I am so sorry to read your news hunni.  I hope that you will be able to take some time out and look after yourselves and be back fighting fit in 2010     .

Lalaby, sweetie, I really hope that everything is okay.  Have you spoken to Dr G about it?

Donkey =- hopefully you are home on your snow day today   .  Its great isnt it!!


BP hope everything is going well.

I have a quick  question, at what point in tx should you have your LIT treatment?  We will be doing the Lp this time and will have to see PA as cant do Greece?

Hope everyone else is okay and that you are all enjoying the weather!
Ells


----------



## Donkey (Nov 24, 2007)

Bankie


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## niccad (Apr 28, 2009)

Bankie - I'm so so so sorry  . I hope you manage to get through Christmas and can start to think about 'what next' soon. Seems that a plan always helps..

Jofie - I know it's really delayed but    to you too. 

I've been avoiding FF for a bit and think I need to carry on avoiding for a bit more. I feel that I have to escape from infertility for a while and try to get through Xmas without being consumed by it. Not that it isn't constantly on my mind. I hope that you all have good breaks and that those in tx get the outcome you are praying for and those with bumps that they get stronger and bigger every day.
Lots of love to you all 
Nic xx


----------



## Ourturn (Oct 8, 2008)

Bankie - I am so very sorry hun, how very unfair             

BP - apparantley you cannot overdoes on b vits as your body will flush out what you don't need, so there is no harm taking the,. Like you I take 5mg folic acid, and I need to start taking them too (on top of my zita west multi vit

Anna x


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## mag108 (Jun 28, 2008)

Bankie
I am so sorry to hear your news. So disappointing a so painful, sending you a huge hug.  

Lalaby: You poor thing. Sending you a big hug too, it is SUCH a rollercoaster.xxx  

hi to everyone else, on our way out tonight early so havent got much time tonight
X


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## siheilwli (Jan 18, 2006)

Bankie I'm so so sorry  

Lalaby - crossing everything that the spotting will go away quickly for you. Hopefully the tight chest is bearable for you.  

Cat


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## Sprinkles (Nov 6, 2008)

Bankie


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## berry55 (Sep 4, 2008)

bankie -   thinking of you. I'm so sorry xxx


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## Cozy (Jul 17, 2008)

Bankie, so sorry to read your news   

Lalaby, I hope its just your haematoma that bleeding and your scan confirms everything is ok    

Ells, If you can try to get to Greece for LIT I would highly recommend. The treatment is superior and he follows the Dr Beer protocol. You have plenty of time to arrange and it doesnt work out that much more expensive for the desired 2 lots of LIT in Athens than it does for 1 lot in London. Personal choice I know, but I'm sure you want a better chance of success. 

BP, vits B6 and B12 are required with 5mg FA to help your body metabolise the FA. You can take additional supplements of these, or if you have a multivit with a decent amount in which you take with your FA and then have a diet containing these vits you will be ok, but supplements are usually recommended to run alongside. Though I dont take them myself as when I added up the B6 and B12 content in everything else I take it was sufficient. 

Hope everyone else is doing ok  

Cozy


----------



## Ourturn (Oct 8, 2008)

Cozy - how much b6 & 12 do you need to take exactly? I imagine I get enough with my zita west vits?
Thanks 
Anna x


----------



## bluprimrose (Sep 1, 2009)

thank you cozy.  as sobroody said, do you know how much i should be taking and is it ok to take in tablet form in the 2ww?  during my 2ww i stop taking my multi-vit as it has vitamin a and iron in it, but i do take a 'super drink' which is bursting with goodness and eat a healthy, balanced diet.  i'd hate to think my 5mg of folic acid isn't working though if i'm not getting enough b6 & b12. 

thanks again

bpxx


----------



## Cozy (Jul 17, 2008)

Sobrody and BP. 

I cant remember exactly, though I do have it written down at home. I'll let you know tomorrow. I'm in Czech Republic at the moment - leaving shortly.

Cozy


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## bluprimrose (Sep 1, 2009)

thanks so much cozy - was going to buy it today but will wait 'til i hear from you tomorrow.

loads of luck on your 2ww!!  sounds like you have some great embies on board!

bpxx


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## agate (Nov 14, 2008)

Dr Beer's info says you need 1 folgard tablet if hetero MTHFR and 2 folgard if ****.

the dose per folgard tab is 

Folic acid 2.2mg 
B-6 25mg 
B-12 500mcg 

He also gives suggestions of other brands of tablets (all US brands) which all vary slightly, so the doses only have to approximate to this - they don't have to be exact.


----------



## FJ (Aug 9, 2008)

Hi everyone
I am so sorry Bankie its all so unfair    

Dr Gorgie has written to me with the treatment I need there does not seem to be a prescription just a letter or is that all we need?

Gemstone injections is this progesterone injections Ive heard they are really painful.
IVIG Intralipids can I get this from healthcare at home? I live in cheshire do they only do london?
Aspirin 75mgs easy to get from boots I can see
Folic acid I take pregnacare brand preconception tablets they are 400 mcgs but he says 400ug is this the same?
Prednisolone is this a steriod? How much is this?
clexane injections is this realy necessary if taking the aspirin I hate injections!
LIT trying to see about going to Athens in Jan. Can see that easyjet do flights from gatwick wish there were flights from manchester
I would love some advice on the above where to get it etc. Dr Gorgie also hasnt said how long we need it for so guess he needs to send a prescription.
Thanks


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## bluprimrose (Sep 1, 2009)

agate, thank you so much for the info.  I was taking multi vits until just before et, then i stopped as they had vitamin a in which isn't meant to be good in pregnancy.  am now worried that my 5mg of folic acid might not be doing the job as i've not been taking b6 and b12 - anyone know? :-( although i think i have been getting it in my diet - not sure how mich though.

i've just bought pregnancare which has b6 and b12 in it but not enough - i take it pregnancare is safe to take in the 2ww - does anyone know please before i pop a tablet?

i will go to a health food shop to get vitamins b6 and b12 tomorrow but i hope i can get the right amount.  Has anyone been able to get them here?  I did enquire about b6 & 12 ages ago but 2 consultants said it wasn't necessary.  I wish i'd stuck to my guns and got it anyway - rather than be in my 2ww with something else to worry about...!!

thanks so much for any help.

bankie, i hope you're doing ok, sending hugs.  And lalaby too - and everyone else

bpxx


----------



## agate (Nov 14, 2008)

FJ

private prescriptions just list out the medications on headed paper - is that what you have? - does it state the doseage and the number of days e.g., 4/52 (meaning 28 days worth)- you just take/post it to the pharmacy like an nhs script.  it will probably be a lot cheaper to get it mail order from a specialist pharmacy like rigcharm or fazely mail order.  Some of them will accept prescriptions by fax to save postage time - if not you need to phone akbil and ask if Dr G can post you a prescription.

yes 400 mcg = 400 ug

gestone is not that bad really - it goes in your bum muscle which isn't as sensitive as you'd think.

prednisolone is a steroid - is your dose 25 mg?

BP: yes pregnacare is safe in 2ww.  If your diet has been good - you probably have been getting enough from that anyway - there is file about dietary B6 and B12 in the immunology files on yahoo groups in the mthfr section.

clexane - if you don't have clotting issues and are only mthfr hetero - you could talk to dr g about giving it a miss - but if you have any clotting issues or are anything more than mthfr hetero i think he would probably say that you really do need it to give yourself the best chance. 

good luck


----------



## bluprimrose (Sep 1, 2009)

Thanks again agate.

P.s. Am MTHFR ****.  Anyone the same and not taken the b vits with the 5mg folic acid?  Although i hope i have in my diet.
  Where is the section you were talking about please?  I can't see it.

bpxx


----------



## agate (Nov 14, 2008)

BP: its here http://health.groups.yahoo.com/group/immunologysupport/files/MTHFR%20information/ - you need to be a member of the group to see the files and it sometimes doesn't work first time so you need to keep trying it.

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


----------



## Sprinkles (Nov 6, 2008)

Cozy ~ safe journey home and wishing you all the luck in the world for a positive outcome hun, everything crossed for you and hope the 2ww doesnt drive you nuts


----------



## mag108 (Jun 28, 2008)

cozy Just wanted to bob on and wish you all the best.
How has it gone for you in CZech Rep?
X


----------



## bluprimrose (Sep 1, 2009)

thank you agate - off to have a look now!

bpxx


----------



## deegirl (Jan 17, 2009)

Hi Girls
I haven't been on FF in ages as school really busy at moment, almost Christmas hols...yay!!  

Bankie - really sorry to hear your news.  It's a horrible empty feeling so many of us know all too well.  Stay positive though as you are still young and for manys a one it has happened naturally like a bolt from the blue.

Lalaby - hope your scan shows that everything is well, each day must feel like a year.

Ells - hope you're well and getting everything organised for your forthcoming cycle.

Berry - didn't see you last Monday (14th) but trust all went well with you.

Hope everyone else is well.

I was with Dr G last Monday to discuss test results and put a plan in place.  Interestingly although my LAD results are REALLY low (although he wasn't phased at all by this) and although that my husband and I have a DNA match, Dr G advised me to use husbands blood for LIT.  When I raised the issue of donor blood being more effective he said that using husbands is safer and because we only have 1 dna match it should be effective.  However he did say that if LAD didn't rise to positive after using husbands blood then donor blood would be necessary.  When I asked if I would have to start contacting Dr T in Athens now he said that by then (early April) he should have something in place at his clinic.  This does sound promising...hope it actually happends.  Can anyone tell me that if I am going to use husbands blood is there any point in going to Athens Dr G did say that Dr A doesn't retest but can Dr G not retest and if needs be send me to Athens again?

Dee x


----------



## bluprimrose (Sep 1, 2009)

sorry all, me again.

i'm off to get dr beer's recommended doses of b6 and b12 tomorrow - but in the meantime does anyone have any more info on how 5mg of folic acid is absorbed without b6 and b12 please?

thanks v much.

why didn't i get hold of it when i started looking weeks ago??! 

bpxx


----------



## Ourturn (Oct 8, 2008)

Dee - Mr G said I could use dh's blood as we only had a partial match, however due to tight timescales I am going to Athens for donor lit, which according to the Beer will be more effective anyway. At Athens you go twice 4 weeks apart, cost £600 per go. Dr A only does one lit, cost £1000. You will have to then pay to have your lad restested to see if has worked. Its up to you but we couldn't afford to pay Mr A £1000 and then go to Athens if it didn't work! 

BP - you are probably getting a far bit of b6 & 12 through your diet so don't panic. I am off to Holland and Barratt tomorrow to get mine. My Zita West vits do not provide enough

Anna x


----------



## bluprimrose (Sep 1, 2009)

thanks sobroody  

am slightly less panicked! - have been doing some research and am quite confident i'm getting it in my diet - but am off to holland and barrett tomorrow too!

bpxx


----------



## berry55 (Sep 4, 2008)

dee girl- what time was ur appointment with dr G? There was a woman sitting in the waiting room @ same time as me, but i wasnt sure if it was u. Did u have on a hat? berry xx


----------



## Chicky Licky (Oct 13, 2009)

Hi all

Wondered if anyone would be kind enough to help me...

I've got my test results back from Dr Gorgy and I'm fearing the worst at the mo as think I'll need Intralipids for my NK cells and LIT to counteract my LAD results - but I'm not sure. 

I've just put down the results below that were marked on my sheet so if anyone could help me with what it all means it would be really great! My other results seem to all be within range.

NK Assay:
50:1 = 18.7
IgG conc 12.5 50:1** = 12.5
IgG conc 6.25 50:1** = 13.3
% CD3 = *97.7

LAD results:
Flowcytometry - NEGATIVE
(T-cells) IgM+ = 9.9
(T-cells) IgG+ = 6.2
(B-cells) IgM+ = 57.0
(B-cells) IgG+ = 18.3

I also test HIGH for Thyroglobulin on the level 1 tests. 

Am I right in thinking that my LAD result should be POSITIVE and all the other levels for T and B cells be over 30% to be normal?

Many thanks for any help with this
Shellie
xx


----------



## ells (Mar 19, 2008)

Hi Ladies,

Hope everyone had a good weekend.  

Cozy, sounds like you have two perfect little embies on board.  How are you feeling?  We cant go to Athens, work commitments etc are going to be too hard to juggle and I dont want to add any more stress to the situation.  We have even looked at combining a holiday with it but just cant do it.

BP hope you get some answers soon hunni.  Sorry I cant help as I havent been told to take this by Dr G.  How is your 2ww going?

Dee, hi hunni, did he say about anything else you would need for your next TX?  I hope you are able to decide where to go to on the LIT.

Lalaby, how are you?  I hope your scan shows good news.  

Sorry for no more personals, will try and pop on later but got a management meeting in a mo and i have to print my reports!!  Arghhhh   .  Hope everyone else is doing okay though.

Ells


----------



## bluprimrose (Sep 1, 2009)

hi ells

am ok thanks - hope you are too.

2ww madness has set in - am going crazy -    !

have my usual pre-period feelings/signs and can't feel any twinges (i could feel my embie implanting last time - honestly!!) - and my ohss is better and i want it to get worse!!! (a sign of pg!).  so all in all not good     going on here.  any positive vibes sent my way would be much appreciated!

off to holland and barrett now to get my b-vits and to take my mind off things.

hope everyone else is doing well.    

bpxx


----------



## Chicky Licky (Oct 13, 2009)

I get the impression that this isn't the thread I should have posted my results on for a bit of help.
Is there somewhere else I should be posting them? 

If no-one replies then I'll get the hint and leave you all too it.

Shellie


----------



## ells (Mar 19, 2008)

Shelli you are on the right thread but you need to post all of the results. We will then be able to help you.  .

BP here's your positivity dance:

[fly]                               [/fly]

Hope everyone else is okay.
Ells


----------



## lalaby123 (Sep 21, 2008)

Shellie - patience girl!!!! we are not on the site all the time   
anyway as Ells has said you haven't posted all your results, from what you have posted i can only tell you that your NK activity is higher than it should be but not too bad and that IVIG works well for you. You haven't posted the results that show if intralipid works or not. I can't advise too well on LAD but I think yours isnt' too bad as one of them you are over 50 but i could be wrong someone else will hopefully come along and advise you

quick update from me girls as feeling too nauseous to stay on the computer......had scan this morning and both babies were there and kicking!!! they have both grown and are ahead of their actual age which is a good sign HOWEVER the hematoma is there and so all they could say was that so far so good but there is no way of saying what will happen next and a bleed can mean nothing or can mean a miscarriage and they said with twins there is a higher risk between 10-12 weeks which is the next two weeks for me so its just a waiting game and taking it week by week, meantime feeling dreadful and can't wait to come off steroids. Had NK tests repeated and just got the results and my 50:1 has only come down to 19.3 two weeks after an intralipid and 4 weeks after an IVIG so I have a feeling Dr G is going to say IVig rather than intralipid going forward       

BP sending you tons of             

Cozy likewise hope you are well and good luck on the next two weeks       

hi to everyone else, sorry no more personals but hope you are all well and getting in the festive spirit xxxxxxxxx


----------



## Ourturn (Oct 8, 2008)

Shellie - I agree you need to post all your results...even though you say they are within the normal ranges...the ranges given don't apply to us as they are used for cancer patients...most nk's need to be around 15% or lower.

Anna x


----------



## agate (Nov 14, 2008)

FJ: sorry forgot to say - am pretty sure [email protected] cover the whole of the UK.  they came out to us and we live way out in the sticks. If you do a search for "Jade Harrington" you should turn up some posts with her phone number.  She is the lady at [email protected] who fixes up home intralipids/IVIGs and humira.  She will accept prescriptions by fax if you are short of time.

good luck Cozy, lalaby - hope everything goes ok for the next few weeks and you can get over this really difficult bit.


Shellieg: like everyone else has said...the bit of your results so far only says that you NKs are a bit high and you do respond to IVIG but you need the rest of your results to see how you respond to intralipids, what your DQa match, what your TNFa ratio is etc.  You are likely to need at least steroids and either ivig or intralipid.  Your 19+5+ would indicate whether you need extra progesterone support and your TNFa would tell you whether you should think about humira.

The bit on the LAD number to look at is the last 2 (mainly the last one). You want this to be over 50 preferably and definitely over 30 - but it depends whether you have ever been pregnant before - if you haven't it is possible that these numbers will be low and not actually be a problem - there is no way to tell though so Dr G will usually suggest LIT as an option for you then its up to decide whether to do the lit or go ahead without.


----------



## agate (Nov 14, 2008)

deegirl said:


> Can anyone tell me that if I am going to use husbands blood is there any point in going to Athens Dr G did say that Dr A doesn't retest but can Dr G not retest and if needs be send me to Athens again?
> 
> Dee x


quite a few ladies seem to think that the way that Dr A administers the Lit is not as effective as Dr T (regardless of whether or not it is donor or paternal lymphocytes) - Dr A puts at least half of the volume in a vein whereas Dr T puts it all subcutaenously - according to Dr T, lymphocytes put in the veins are completely ineffective. My assumption is that if Dr G is setting up his own LIT he will probably be following Dr T's method rather than Dr A's so if you can get it with Dr G to suit your calendar that sounds much easier than athens. The reason it is difficult to retest your LAD after having LIT w Dr A is that Dr A prefers to administer the LIT during your IVF stims which doesn't give you time to retest your LAD. Dr T prefers you to schedule in 2 doses of LIT and then retest your LAD before you start your cycle.


----------



## bluprimrose (Sep 1, 2009)

ells thank you for your amazing dance - and for your     lalaby - i feel much better!    

lalaby, i know 'we'  still need to be cautious but what lovely lovely news about your little ones.  am very happy  .

afm, can feel mild af pains right now - embies implanting or af...  af is always eratic with me but after egg collection it normally arrives 16 dpo - am 12 dpo today but feel mild cramps often a week or so before af.  who knows?!

love to all my thread buddies.

bpxx


----------



## ells (Mar 19, 2008)

Yey for lalaby's twinnies, great news hunni.  Have they said whether haematoma is srinking?  I bet you had a sign of relief, hopefully things will behave for you over the next two weeks.  Make sure you take it easy and keep your feet up   .  

BP keep positive vibes going hunni, think lots of     thoughts.  Sending bucketfulls of PMA your way.

Hi to everyone else.

Ells


----------



## deegirl (Jan 17, 2009)

Agate - thanks for that comprehensive explanation, it's making more sense now!  Yeah I'm thinking Athens with Dr T if  Dr G hasn't set up provision for LIT by March.  

FJ - HAH are brilliant, I used them for my last cycle and I live in NIreland.

Lalaby - well done, that's great news!  Must have been so moving to actually see your babies kicking.  Hoping that everything goes well from here.  

Blueprimrose - hang on in there, the 2ww won't last forever!  It's the hardest part of it all isn't it.   

Ells - hope you got those reports done!  How's your mum keeping?  Yes Dr G said that on top of LIT I will need one shot only of IVIG (NK levels are fine now but yet a year ago there were 28%!!).  I will also need humaria as levels are now 31%, just over what they should be (8 months ago they were 20%).  I asked him to explain my fluctuating levels but he said that happens with an imbalance in the immune system.  He also said that the same happens with sperm samples.  He's the expert!   I'll need clexane and I'm assuming steroids too.  

Berry55 - hope all is well with you.  My appointment was at 11am but he took me about 10.45.  When I was there, there was a lady and her husband opposite me.  I don't think I had my hat on.  I was away by half 11. 

Sobroody1 - thanks for your input.  I'm thinking Dr T in Athens is better and will try husbands blood first as I have time.  Is retesting covered in Dr T's price?  I'm assuming we don't have to go back to Athens for a retest  Who restests then?   

Hi to everyone else


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## agate (Nov 14, 2008)

deegirl said:


> My appointment was at 11am but he took me about 10.45. When I was there, there was a lady and her husband opposite me. I don't think I had my hat on. I was away by half 11.
> 
> Sobroody1 - thanks for your input. I'm thinking Dr T in Athens is better and will try husbands blood first as I have time. Is retesting covered in Dr T's price? I'm assuming we don't have to go back to Athens for a retest Who restests then?


We were there that monday too - our appt was 10am - can't remember what time we went in but then I had a drip in the back room with 2 other ladies.

Retesting LAD is £200 with Dr G. You can either get the forms posted from Dr G (it shows you how many tubes of blood from you and how many from your DH), find someone to draw them locally (GP? private hosp?) on a monday afternoon then post them next day before 9am delivery back to TDL (having paid Dr G), or you get the form from Dr G and then take it to TDL and get your bloods drawn. The bloods MUST arrive at TDL very fresh on a tuesday morning to be sure the lymphocytes are still good. You can have them drawn at TDL on a monday or tuesday morning only.


----------



## deegirl (Jan 17, 2009)

Many thanks agate.  That sounds pretty straightforward, I think!  Hope all is good with you


----------



## mag108 (Jun 28, 2008)

.......trying to fly to Dublin today! mmmh
Happy xmas to you all
You have been the best of friends, caring, kind, amazingly responsive to me.

Here's to the best year for us all

XXX


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## berry55 (Sep 4, 2008)

dee girl- what did the lady and her DH look like? I was with my DH. I'm small, dark hair... prob looking very worried lol xxx


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## lalaby123 (Sep 21, 2008)

Fj I'm also in Cheshire and I spoke to dr g today and he had no problem arranging ivig for me thru HCAH he sent them a fax and they rAng me straight away I'm getting my Xmas dose on Xmas eve!!!


Wishing everyone a wonderful Xmas and I hope everyones dreams com true in 2010 

Xxxxxxxxxxxxxxxxx


----------



## FJ (Aug 9, 2008)

Hi everyone thanks for all your help and advice am going to go with h at home to save on ticket and hotel for london. Just bit worried about Athens about to book lit and do not want donor only dh blood we are a partial match do you have to have donor in Athens? So grateful for your advice don't know what I would do without it thank you fj x


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## berry55 (Sep 4, 2008)

I'm so so so so soooooooooooo annoyed! i just had a phone call from my GP telling me that the bloods i had taken for my karyotype have been put in the wrong tubes and i will have 2 get the blood taken again. But they dont have the tubes in my gps office for the blood they need to order it in!!! I'm so so annoyed! does any1 know if my chromosones could actually  b a problem as  i have always had good quality eggs that always fertilise? or does that not make a diff?? 

xxxxxxxxxx


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## agate (Nov 14, 2008)

FJ: you can have either paternal LIT or donor LIT in athens.  Paternal LIT is cheaper, but then you have to factor in a chunk of extra costs to get the screening tests done for your DH before you go for LIT.  Sometimes Dr T finds it hard to get donors, so paternal might be easier to get arranged.

Berry55: it is possible to have karyotyping issues that aren't apparent until later than the embryo stage - so unfortunately you won't know for sure til you get your results back - but, chromosomal issues are pretty rare so odds are you don't have a problem


----------



## deegirl (Jan 17, 2009)

Hi Berry
The lady and her husband sitting opposite me in Dr G's waiting room had dark hair and her husband did too.  I don't think it was you, she was def older than 22!!  Also they were taken before me.  I think you had said that your appointment was at 12 because we worked out that you would have been going in as I was coming out!  When I came out about 11.30 the waiting room was empty.  I have quite long blonde hair with a black coat and scarf.  

Dee


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## deegirl (Jan 17, 2009)

Agate - you had mentioned to FJ that if using paternal blood in LIT, husband needs to get screening tests done.  Do you know who does those, where do they have to be sent, how long in advance do they need to be done etc?  Thanks x


----------



## berry55 (Sep 4, 2008)

deegirl- ohh well it wasnt me   

Agate- thanks for the info. I'm starting to worry that maybe it is a chromasonal problem.. would just b my luck. However... i'm sure these tests will tell. Just a pain that i have 2 wait longer than i thouhgt! xxx


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## agate (Nov 14, 2008)

deegirl said:


> Agate - you had mentioned to FJ that if using paternal blood in LIT, husband needs to get screening tests done. Do you know who does those, where do they have to be sent, how long in advance do they need to be done etc? Thanks x


This thread has the list of tests. Although, its probably better to double check with Dr T when you get your appt just in case he has added anything/taken anything away if you are a few months off doing it. You can get them done anywhere who will do them for you. Your GP might help with some of them, otherwise your local private hospital or else there is always TDL. At TDL they take less than a week, but might take longer through the NHS. As far as I know, Dr T doesn't have a strict cut off for how old the results can be - unlike Dr A who won't let you use results that are more than 30 days old. So you might have some of these already done for other purposes which will bring the cost down



berry55 said:


> Agate- thanks for the info. I'm starting to worry that maybe it is a chromasonal problem.. would just b my luck. However... i'm sure these tests will tell. Just a pain that i have 2 wait longer than i thouhgt! xxx


Honestly, karyotype probs are REALLY rare, odds are your tests will show "normal female karyotype" and that's all.


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## Peanuts (Apr 29, 2007)

Hi girls

I've not been posting for a while as still trying to get my head around my immune issues.  Have been really annoyed and frustrated at myself for waiting so long to go down this route and wasting time, money and most of all my emotions and enduring 2 more m/c before doing this  .  But think I've finally come to terms with things and are planning to go ahead with a cycle in March time to try again with DrG's help.

I just wanted to pop in to wish you all a lovely Christmas and a Happy New Year - here's hoping that 2010 is our year  
I'm heading to my folks for Christmas so won't be about for a couple of weeks, but will definitely be back for support and advice in the New Year as I get myself geared up to try again.

Take care    
Dxx


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## lalaby123 (Sep 21, 2008)

Peanuts, immune testing is definitely way forward for you with your history, better late than never so don't beat yourself over it.....have a great xmas and see you here in Spring xxx

AFM ladies spotting started again :-( so i may not be posting for a while until feeling more positive

love and luck to all in 2010 xxxx


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## Cozy (Jul 17, 2008)

Lalaby,

you take care of yourself   I   its just the haematoma leaking a little and nothing more sinister than that.  

I know its a very worrying time. Do you have a quiet xmas planned?

Take care and take it easy

Happy Christmas   

Cozy


----------



## bluprimrose (Sep 1, 2009)

lalaby, am praying for you that the spotting is just the spotting lots of pg ladies experience during pg.

hope you and all my ff's have a wonderful christmas and peaceful 2010 full of only good things.

bpxx


----------



## ells (Mar 19, 2008)

Hi ladies,

  just wanted to send you all lots of love for a wonderful Christmas and extra special wishes for New Year.      

Lalaby, hope the bleeding stops and like the other ladies have said that it is just the haematoma.  Have a relaxing, peaceful Christmas hunni.

BP, hows it going hun?  When is OTD?  It cant be that long, sending lots of     your way.

Peanuts, you will be fine on this thread the ladies are great!

Cozy, hope you are feeling okay??

Mags, hope you make it to Dublin - we now have awful rain   I much prefer the snow!!

Spinkles, sweetie, hope you are okay.

Omni, Choice and Cath hope you are all well and that bumps are growing nicely!!

Hope everyone else is okay and that you are all taking care of yourselves in this weather.  

Guess what.... I got the humira on BUPA     , cant quite believe it but I have got it!!  I am waiting for the cons secretary to phone me and let me know when I can come in and get it etc.  Its nice not to have to pay out for it, I am really hoping that I can get it between Christmas and New Year and start to feel better!! I'll have to let Dr G know .

Anyway, better go, speak to you all after Christmas, lots of        to everyone.

Ells


----------



## Cozy (Jul 17, 2008)

Hi Ells,

great to hear BUPA are paying for Humira... I wish they would for me. Is that because of your Crohns?

I'm doing ok thanks. The 1st week of the 2ww is always really easy, its just the 2nd week when I am dying to test that is the problem as I am impatient. This cycle I had ET on 19th December and I have tested already.... it was a BFN. I'm not too worried about it though as its early. I'll try again on xmas day and hope Santa has brought me a nice present... or two  

Have a great xmas    

Cozy


----------



## ells (Mar 19, 2008)

Hi Cozy,

yes the Humira result   is due to my crohns, still dont know how the doctor managed to get the authorisation for it!!

Good luck for OTD  - Santa should hopefully be generous this Christmas!!!       

Have a great Christmas.

Ells


----------



## Diane72 (Oct 29, 2007)

Hello All,

I've been hiding from FF for a little while after the last miscarriage, just trying to sort my head out. Sorry I am out of touch with everyone's progress but sending you all luck.  

We went to see Mr. Gorgy today (I like him and his receptionist so much, they are both so warm and kind). It seems DH has some aneploidy and DNA fragmentation issues so we are going to try again with CGH and possibly fertilising half the eggs with donor sperm and freezing them for later (but also freezing DH's sperm as a back up for surrogacy in the future). With this in mind we need to go to Greece in January/February to do LIT. Is anyone going out there beginning of the year that could help book me in?

Wishing everyone a wonderful X-mas!!!!     

Diane x


----------



## Ourturn (Oct 8, 2008)

Diane - I am going to athens 12th Jan..pm me

Anna x


----------



## Sprinkles (Nov 6, 2008)

Just wanted to bob on and wish everyone a merry christmas 

To everyone who's not necessarily looking forward to the festive season lots of   to you

Personally cant wait to see the back of this year and here's hoping 2010 is a little kinder to us all  

Wishing you all everything you wish for yourselves


----------



## Swinny (Jul 10, 2007)

Hiya Cozy

Just wanted to pop on and wish you all the luck in the world for testing. We've been through so much and I so want this to be your time my darling. Give me a call for a catch up when you're free.

Love and hugs 

Sarah xxxxxxxxx

P.s Hi Anna, good luck in Athens xx


----------



## deegirl (Jan 17, 2009)

Hi Girls!

Just siging on quickly to wish everyone a wonderful Christmas.  I know the pain of not having children is evident at this time of year (well it is for me) but it's also very special spending it with loved ones.  Here in N Ireland it's like a white wonderland and -4 today  

Cozy hope you get the best Christmas present ever.  

Ells wonderful news that you're getting humaria on NHS...well done girl!  

Diane welcome back again.

Lalaby hope the spotting has stopped.

Love to all others also - swinny, sobroody1, sprinkles, blueprimrose, agate, berry etc etc.

Dee x


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## bluprimrose (Sep 1, 2009)

thank you dee.

wishing all of you lovely ladies a very merry christmas and i hope all out dreams come true in 2010.

am afraid i've just received the bad news.  it's a BFN for me.  feeling rather numb at the moment as it's just sinking in.

sorry to be the bearer of bad news.  i was so hoping it would be different.

hugs to all who need them at this time of year when life can feel even tougher than usual.

bpxx


----------



## Cozy (Jul 17, 2008)

BP, so sorry it was BFN for you. I hoped   would bring you something nice. Its crap when we get BFN's at any time of the year, but its even harder at christmas when we are all supposed to be so jolly

I know it will put a dampner on your christmas, but try and have a good one  

I hope 2010 is a better year for you and it brings you all you dreamed off

Cozy


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## Ourturn (Oct 8, 2008)

BP - I am so sorry hun          Its bloody unfair  

Anna x


----------



## berry55 (Sep 4, 2008)

Just wanted to wish everyone 1 a Merry  Christmas!!! xxxxxxxx


----------



## Sprinkles (Nov 6, 2008)

BP


----------



## berry55 (Sep 4, 2008)

BP- i'm so so sorry hunny.. thinking of you xxx


----------



## bankie (Dec 27, 2007)

Hi all,

I know that we may not all be looking forward to Christmas this year, but all the same I wanted to wish you all a very:



BP - I'm so sorry for your BFN hun, it must be very tough for you given the timing but I hope that you can look forward to a more positive 2010.

Cozy - good luck for testing, will be thinking of you hun.

 bankie


----------



## bluprimrose (Sep 1, 2009)

thank you all.

bpxx


----------



## FJ (Aug 9, 2008)

Really sorry BP


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## Skybreeze (Apr 25, 2007)

I hope 2010 brings all your hopes and dreams. I wish you luck and happiness
Natalie (your mod!) xxx​


----------



## ells (Mar 19, 2008)

BP      I am so so sorry hunni.  There are no words that will help but try and keep strong.  2010 will be our year     .

Ells


----------



## Donkey (Nov 24, 2007)

BP so sorry for your bad news  

Happy Christmas to you all...lots of love and luck for the new year  

donkey xx


----------



## Cozy (Jul 17, 2008)

ladies,

Happy Christmas! I hope  brought you all lots of nice presents.

I hope you all have a great day 

Well I was up at 0345 this morning.. couldnt sleep.. again! I tested and it was BFN. I'm only 6dp5dt, so its still early days. I was just hoping that  was going to take pity on me this year and decide that over 8 yrs TTC and 6 TWW's was enough and he would put an end to it all, but it was not to be...... yet! I will retest on 27th 

Take care

 

Cozy


----------



## bluprimrose (Sep 1, 2009)

i just wanted to say thank you for your messages.  

hope you all had lovely christmases.  i had a nice day but now it's quiet again i'm feeling terrible.  i can't stop crying and keep asking myself why me.

sorry for the negative post - really i just wanted to thank you all for your support.

hugs to you all.

bpxx


----------



## Chicky Licky (Oct 13, 2009)

Cozy - I'm on tender hooks logging on every day to see how you're doing!!!! Early days yet though, I've got everything crossed for tomorrows test!   you get your much deserved BFP. 
Btw, thanks for all the help and advise. Cat is going out to Athens on 29th and is going to try and make me an appointment! 

Shellie
xx


----------



## Cozy (Jul 17, 2008)

Thanks Shellie


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## Louiseb26 (May 13, 2009)

Hiya Ladies

Cozy - Goodluck lovely.I really hope you get your BFP.Everything crossed.   Thanks so much for all your help. 

I manged to get my appointment with Dr T.I go out to Athens on the 12th Jan...very nervous...but looking forward to it.

Hi to everyone else...hope everyone is having a lovely Christmas.

BP - Really sorry to read your bad news lovely...stay strong  

Lou xx


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## ratsy (Dec 28, 2008)

Hi girls 

Im knew to immunes so i need your advise if ok 

Ive got an appointment with DR G march the 8th im going to book my train ticket tomo  as its cheaper to book in advance so i need some advise on what train to get im traveling from cardiff and im staying at a hotel 5 mins from DR G  office .so not sure what train station i need to go to and where to get off  

Thanks for your help  

Ratsy   xx


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## lalaby123 (Sep 21, 2008)

Bp I've just read your news I just don't know what to say other than my thoughts are with you           I hope time will heal your disappointment xxxx

cozy hope we hear some good news from you today xxx

hope everyone had a good Xmas and best wishes for 2010


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## Chicky Licky (Oct 13, 2009)

Hi Ratsy

You'll need to get off at the Regents Park tube stop which is on the Bakerloo line. When you come to the steps to go out, head left towards Marylebone Road on the sign. Walk along Marylebone Road until you get to Devonshire Place then turn left down there. You'll cross over Devonshire St and Weymouth St. After that look out for 57a on the right. Allow about 15 mins for the walk. 
There's a buzzer next to the door. When you're in the hallway, the door for Dr G's is ahead on the left and there's another buzzer to press if no one's popped their head out to greet you. 

If you have to have blood tests done, you come out of Dr G's and go about 2 doors to the left. 

Hope this helps and good luck with your appointment. If you want to know anything else just let us know.

Shellie
xx


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## ratsy (Dec 28, 2008)

Thankyou shellieG

Im lost around london ive only been once and that was about 9yrs ago christmas shopping were going the day before my appointment so where not stressed  

Thanks for your help i appreciate it 

R   xxx


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## Chicky Licky (Oct 13, 2009)

Hi Ratsy

No problem at all hun. Just happy to help as so many people have helped me out on here already, and I'm new to this myself! 

Is you appt about 11am ish? The reason I ask is that if you need to have bloods taken you'll need to go a couple of doors up to the lab before 1pm so you're blood can go on the Fedex to the US. You'll be in with Dr G for about an hour. I'm sure the receptionist would have mentioned all this too you already but I just thought I'd let you know anyway as it would save you another trip down there.

Shellie
xx


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## Cozy (Jul 17, 2008)

Good morning ladies,

Well I feel completely stuffed this morning. I dont think I have stopped eating for 2 days and today will be another lots of food day too.

I was planning on going on a diet in the new year.... but as I will be getting fat over the next 8 months anyway I have decided not to bother.....

yes, you read it right..... I will hopefully be getting fatter over the next 8 months..... I got a    this morning. 

I am going for a HCG on Tuesday so we'll see what my numbers say - I am currently cautiously optimistic and will feel better when I have had 2 HCG's, as like we all know, things can go wrong so quickly.

This is the 1st time I've had any chance of an IVF cycle working and I believe that is all down the the immune treatment plan devised by Dr Gorgy.  I wish I had found about about all the immune problems I had earlier. I had immune testing done in 2006 prior to my 1st IVF cycle at ARGC but they werent as bad then, they appear to have progressively got worse after each cycle, which is what can happen.

Cozy


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## ratsy (Dec 28, 2008)

Hi shelliG

Yes its 11pm i could av had it earlier but thought as im already there wanted to have a lil lay in after travel and dont often get the chance to enjoy hotel what with saving all the time .

Do you think that its ok time to go for appointment ??

Cozy im so pleased for you BIG CONGRATS TO YOU AND DH  

R   xxx


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## agate (Nov 14, 2008)

Cozy -omg how fantastic! what an xmas present!

Ratsy - 11am should be ok but keep an eye on the time if Dr G is running late and if necessary ask Akbil to phone TDL referrals for you and check what time they are sending their RFU bloods to make sure you don't miss the boat. They normally don't cut off until 2pm but some days its 1pm.  I'm assuming your appt is on a monday or tuesday because those are the days that bloods are done for chicago. Although the odds are you will end up having the standard batch of tests run, you can't really get the form and get your bloods taken before your appt, because Dr G will want to run through the test with you because it is of course your decision whether you want all the tests or want to opt out of some of them.  You will probably end up wanting: NK Assay, TH1:TH2 cytokines, DQa, LAD and MTHFR


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## Ourturn (Oct 8, 2008)

Cozy - OMG, CONGRATULATIONS!!!!


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## ells (Mar 19, 2008)

Cozy, what fantastic news!!! I had a tear or two or three in my eye reading your news. Looks like Santa really was listening!!!! Fabulous news !!! I hope you get really big and round  
[fly]                      [/fly]

What a fantastic start to 2010!!!

Ells


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## Donkey (Nov 24, 2007)

Wonderful news cozy, I'm so pleased for you    what a great start to 2010  
donkey xx


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## berry55 (Sep 4, 2008)

Ohhh cozy congratulations!!!!!!!!!!!!!!!!!!!!! What a fab start to the new year it will be!!!! xxxxxxxxxxxx


Does anybody know when i will get my immune results?? 10 days from the day i had them taken was xmas day... so will it b after new year? or inbetween i cant wait to find out whats going on! xxxx


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## lalaby123 (Sep 21, 2008)

Cozy!!!! I am soooooooooooooooooooooooooooooooo chuffed for you                          

really congratulations, you have been through a lot and I so wanted this cycle to work for you am so glad the immune treatment has done the trick. Have you told Dr G? you need to get a drip straight away and another one upon heartbeat scan. who is going to monitor you over the next few weeks in Manchester since you did you cycle abroad??


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## Cozy (Jul 17, 2008)

Hi Lalaby,

thanks  

I have emailed Dr G, I will arrange HCAH to come and do the IVIg's and/or Intralipid's and see what else he suggests.  I will be going for private scans aswell as my NHS ones. 

I'm going to Care on Tuesday for my HCG

Cozy


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## agate (Nov 14, 2008)

Berry - they will come through in dribs and drabs - the DQa take the longest - you can look up each test in the manual here

http://rosalindfranklin.edu/DNN/home/CMS/Microbiology/CILab/CITests/tabid/1311/Default.aspx

which gives you an idea of how many working days the tests actually take to run, then you need to add on the transport time.

If you phone akbil when you think the tests should have come back, she will be able to fax you a copy.

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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## Louiseb26 (May 13, 2009)

Hiya

Cozy - Thats brilliant news lovely   Well done and big congrats to you.You have just given us all hope,that you get results from having immune tx.Thats the best Christmas presant ever.

Lou xx


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## Swinny (Jul 10, 2007)

Cozy - Just wanted to bob on here and join in the celebrations            I nearly dropped the phone this morning mate!!!!  I couldn't be happier for you two, you so deserve this. Bet your head is still in a spin now. Speak to you in the next few days chick xxxxxxx


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## Cozy (Jul 17, 2008)

Thanks Swinny  

I really wished we could be going through this together, but it will be your time soon. I just hope P pulls his head out of the sand and realises that you have a good chance of success after immune treatment and it might just be the answer to your prayers.

Take care   

speak soon 

Cozy
x


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## Chicky Licky (Oct 13, 2009)

Hi Ratsy

11am is just fine for your appt time! Have you had your level 1 tests done by your GP yet? If you haven't might be worth organising them so you can take the results with you when you go to see Dr G. Pm me if you'd like the full list of what to ask for. 

My GP wouldn't do some of them so we had to pay to get them done with Dr G at an extra cost. I couldn't even get the Karyotyping test done on the NHS, which I was a bit disappointed about. Would be worth finding out what your GP can and can't do so you can tell Dr G. I didn't know when I went for my initial appt, so I've had to have blood drawn twice and wait for another lot of tests to come back. 

Shellie
xx


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## Sprinkles (Nov 6, 2008)

Just wanted to bob on and say a huge congratulations to Cozy, what a wonderful xmas present for you luvvie, take care and wishing you a happy and healthy 8 months xxxx

Also hi ratsy hope you're ok hun, I'm sure you'll be fine with your appointment at DrG's and the ladies on here are lovely and will help loads xxx


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## Zeka (Mar 7, 2009)

Cozy - wohoooo! Such fantabulous news to get at Christmas especially! Pray pray your bloods are nice and strong over the coming weeks.x 

...Anyone at the clinic on Tue am? I started on the Fosti today for a round of IUI this month. I'm hoping to get 4-5 follies growing to at least have some chance of it working.So it would be lovely to say hi if anyone is around. Babydust to us all and maybe a sneaky glass of vino seeing as its Chrimbo!
Zeka x


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## deegirl (Jan 17, 2009)

Firstly blueprimrose - I am so so sorry to hear that you got bad news.  Just remember though most if not all of us on this board have been there but that is not necessarily the end.  Many of the ladies on here have now got the good news they were hoping for.  

Cosy - what can I say?  I am really really pleased for you!  It's so encouraging to hear your wonderful news after so many negative cycles.  Well done!!  

Ratsy - 11 should be ok but if you want to check with the receptionist then do so.  My first appointment with Dr G was also at 11 on a Monday and we had all our bloods taken the same day.

Dee xx


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## mag108 (Jun 28, 2008)

well our rollercoaster xmas is not over yet.
A bit fed up that I have managed to organise it that I am spending all of 1 day at home (Dublin now London!) and that has been spent tidying for some rellies visiting! So much for a relaxing time!

I will have to have a BIG rest weekend after next to make up for it.

Just bobbing on to say a huge congrats to Cozy! What totally fab news! Swinny txted me in Ireland yesterday, I am so so chuffed for you hun and I wish you the very best!

XXXX
I will try and bob on over the next 4 days, we are staying with Jays mum with no int access!!!! Yikes

XXX


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## FJ (Aug 9, 2008)

Congratulations to Cozy! Really good to hear you news.
Still thinking of you BP though   
Planning to ring Dr T tomorrow and get booked in for LIT in Jan. He said he may be doing it on the 19th. Hope it all works out with flights etc, we have bought a guide book for Athens. Does DH need to have blood tests first like HIV etc? Not sure who will do these and how much it will cost. Still waiting to hear from GP about whether PCT will fund Karotyping been over two weeks now.


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## ratsy (Dec 28, 2008)

Hi shellieG .Ive had some of my level 1 tests done from gp this what ive had done 

1/Full blood count 

2/ Liver function general 

3/ Liver function nos 

4/ igG anticardiolipins level 

5/ Thyroid peroxidase antibod 

They all came back normal do i need any more .ive also had a test done at my clinic think its chromosone test myself and dp had blood taken and it took 10 weeks to come back .not sure what that was  

Ive also booked my train tickets .it was £ 11 each  leaving 8am from cardiff and the lady at the station said dont book return until the day just incase my appointment cancelled and she said the price wont change and it will be £ 37 return the next day so im pleased with that i get off at paddington and change to bond street 


Sprinkles .hi im fine thanks hope your ok and yes the girls have been lovely and so kind and helpful i havnt got a clue  

Deegirl / thanks for advise im going to try and phone and change it to 10 its ages away its not till march 8th so i might be lucky at least i wont be worrying .but if i cant at least i know 11 should be fine thanks 

Thanks girls R xxx


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## lalaby123 (Sep 21, 2008)

Hi Ratsy   nice to see you here! re your level 1s you should try and get the following as well 

2. Thyroid function tests (both free T4 and TSH)
3. Immunoglobulin panel (IgG, IgA and IgM)
4. Autoimmune antibodies (must include anti-nuclear antibodies and anti-mitochondrial antibodies)
6. Thrombophilia (must include lupus anticoagualant, Factor V Leiden
and Panthrombin gene mutation)

its a good sign that you don't have antithyroid antibodies as a lot of people with immune issues have these.....you need to do the thrombophilia ones to rule out any clotting issues otherwise you will have to do them with dr G and pay for them but your GP should do these for you specially with your history

good luck xxx


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## ratsy (Dec 28, 2008)

Hi lalaby 123

Nice to hear from you how you doing you ok  

Ive had the lupus test at hos ive got slightly raised hos said 30 being norm mine 31 so they put me on clexane and baby asprin to thin blood so will that mean ive had the thrombophilla tests done im going to go my docs this week too see if i can have the others 

Thanks R xxx


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## lalaby123 (Sep 21, 2008)

Ratsy no the lupus test is one of the thrombophilia tests if u haven't done the others listed below then best do them xxx


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## ratsy (Dec 28, 2008)

Hi lalaby123

Just phoned docs and spoke to receptionist and she got all shirty and said we gave you all the bloods you had and if not here then there at your hospital so dont know what that means    i said yes but doc couldnt do them all she asked what they were and i said .next min she came back and said weve printed them of come and get them today she was in a right mood   

My docs hasnt got a clue ive been twice for level 1 tests and its still not right .i dont think they know  .

Ive got to get a copy of my notes from hos next month il see what tests hos has done i know they did some after my m/c 

I  will just have to take the ones ive got  

Thanks for help xxxx


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## Chicky Licky (Oct 13, 2009)

Hi Ratsy

My GP didn't know what the level 1 tests were. I had to take in the list from FF and even then they didn't do them all. I gave up in the end and got the stragglers done with Dr G. Dr G said that they are sometimes referred to as "Screening tests for recurrent miscarriages" - that seemed to make a bit more sense with my GP!

I think the chromosone one that you had done, where both your bloods were taken, might have been karyotyping but you'd need to check to know for sure. I had to pay £450 for Dr G to do this one as my GP wouldn't do it. If you can get this one done on the NHS it would be worth doing before you go too.

As you've got time on your hands though, I'd definitely make sure you have a complete set of level 1's before you go to see Dr G - it'll save you time and money in the long run! Here's the full list so you can check down it to see what you have and haven't got.

Insulin resistance (fasting glucose test)
Thyroid levels (TSH, T3, T4)
Anti Nuclear Antibodies
Anti thyroglobulin
Anti-thyroid antibodies
Full Blood count
ESR (Erythrocyte Sedimentation rate)
RA (Rheumatoid Arthritis)

BLOOD CLOTTING PANEL (Thrombophilia panel)

Serum Immunoglobulins (IgG, IgM and IgA) 
Activated Protein C Resistance 
Factor V Leiden genotype 
Anti Phospholipid Antibodies 
Lupus Anticoagulant 
Anti Cardiolipin Antibodies 
Plasma Free Protein S level 
Factor II G20210A 
Prothrombin Gene Mutation 
Antithrombin III M
Fibrinogen level 
APTT (Activited Partial Thromboplastin Time) 
APTR

MTHFR (methylenetetrahydrofolate reductase) and connected with this is measurement of your homocysteine levels

Hope this helps Ratsy!!!
xx

*Quick question for everyone *- My thyroid function test came back normal but I have high Thryoglobulin levels. My GP doesn't know what I'll need to lower then and has got to consult an Immuneologist in the New Year. Does anyone have any ideas? I'm planning my next cycle at the end of Feb or Mar and am bothered I might need time for things to get into my system to lower it.

Shellie
xx


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## ratsy (Dec 28, 2008)

hi shell 
Thanks for the list im missing four of them my docs said last time i went that they cant do all of them dont know if its coz im down in wales so looks like il have to take what i have .im going to wait for today and see what she gives dp hes picking some blood results up today 

I think that blood test was karyotyping they didnt want to do it at first because she said it was very expensive hos only gave it to me coz of the 2 m/cs and i said i might be wasting ivf if it is that .do i need to have it repeated if it is karyotyping they will never let me have that done again she said i was lucky to have it that time .

can i ask you what it is and the what is the MTHFR 

Thanks  for all you help shell soz if im asking to many questions xxxx


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## Chicky Licky (Oct 13, 2009)

Hey Ratsy - you can never ask too many questions at all and I really don't mind answering anything I can answer!!!   I was missing about 4 blood tests too so sounds about right. I just got them done with Dr G in the end. 

I have read up on what Karyotyping is but its hard to put into words. Put it into google and you can find out. MTHFR I'm not sure about either - that's a test that my GP couldn't do and I'm waiting for the result to come back via Dr G.
I'll let you know when I find out though! 

Shellie
xx


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## -Starflower- (Dec 29, 2009)

Hi, I'm not sure if I'm posting in the right place but I'm a patient of Mr Gorgy's for recurrent miscarriages.  I don't need IVF but I'm going to have LIT, Humira, Heprin, Asprin and Progesterone.  Should be on Prednisone but can't tolerate it due to M.E./C.F.S.

Anyway, I live in Cornwall near Truro and need to find a private doctor locally who will do me a TB test - the Quantiferon one - so I can go on Humira.  Does anyone know one?

Many thanks.  And apologies if I'm interrupting and not in the right place!


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## lalaby123 (Sep 21, 2008)

Shellie/Ratsy, MTHFR is another clotting factor and something to do with how your body processes folate and if you have this then you need to take high dose folic acid as opposed to the usual 400 dosage. My GP wouldn't do this one or Karyotyping but most GPs should do the others

Shellie ....what is your TSH and antithyroid antibody levels? what is considered normal by one doctor is not considered normal by another


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## berry55 (Sep 4, 2008)

Hi girls,

i'm a bit confused as to what to do about getting my tests results. do i need to phone Dr G office to get them sent out to me? or will the just get sent out automatically?? I got the bloods taken on the 14th of december.... when u think i should get them?

berry xx


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## ratsy (Dec 28, 2008)

Thanks shellie/ lalaby

I know its like getting blood out of a stone isnt it  

My results for the chromosone test came back all ok   i had them done at my clinic 

I asked my clinic bout testing for MTHFR  and she said no need and just gave me extra folic acid she said it wont harm you   does that sound right ??

xxx


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## Cozy (Jul 17, 2008)

Berry, 

if you phone Dr G's office and speak to Akvil she will fax them to you or post them too you. You then need to arrange a consultation with Dr G, either in person or by phone, to go through your results and your treatment plan.

Cozy


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## Zeka (Mar 7, 2009)

ratsy said:


> I asked my clinic bout testing for MTHFR and she said no need and just gave me extra folic acid she said it wont harm you  does that sound right ??


Hi Ratsy, my MTHFR came back hetero positive and Mr G just said I would need Clexane (- I've had it on both IVF cycles anyway!). And when I asked about increasing the dose of FA, he said there was no need.  ..so i'm a bit confused too as I thought most people were advised to take extra FA.

Zeka x


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## blueytoo (Oct 5, 2003)

Hi everyone

I noticed on the website for FGA that there is a price for IVF/ICSI of £3500 which includes all drugs and blood tests too. It says conditions apply, does anyone know anything about this and what the conditions might be? There is no date on the price list so maybe it is terribly out of date.

Thanks

Claire


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## ratsy (Dec 28, 2008)

Hi zeka 

I was in two minds as to have the test as im already on clexane as i have slight clotting issues so wasnt sure if it was worth having it i just dont know what to do 

Is that all he gave you have you had anything else for it ??

I dont know what to do now 

R xxx


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## lalaby123 (Sep 21, 2008)

Sflower sorry not sure about TB test can't your Gp do them for you? Otherwise perhaps best to post in the counties thread 

Ratsy don't worry if dr g thinks it necessary he will test your MHtfr it's only 120 so not too painful 

Cozy hav u had hcg test yet??hope all well 

** sorry can't help re prices as haven't done a full cycle


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## ratsy (Dec 28, 2008)

Thanks lalaby 

Id rather do that like you say he will know what to do i think im just going to wait and see rather than worry bout things 

R xx


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## Zeka (Mar 7, 2009)

Ratsy - Mr G said I just need Clexane during any tx I am having (so I'll start on D6 of this IUI cycle) but that I don't need to take anything else for it either during or after tx. (...I thought additional FA was also part of the tx from everything I have read or learnt from freinds in a similar position ?)

I think the seriousness also depends on whether you are 'heterozygous' or 'homozygous' - from one parent or both. This list of test results was posted on this link previously, so I guess it depends on which combination you may have

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)


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## ratsy (Dec 28, 2008)

Hi zeka 

On my last cycles i dont start the clexane until day of e/c but im going to ask on this cycle if i can start earlier my clinic then advise you take it untill they tell you to stop .I also take baby asprin aswel right through tx  perscribed thru clinic 

On my last tx they gave me extra FA only because i asked about it but before this i wasnt giving it i dont think its standard that you have extra just your normal dose 

I havnt been tested for it im going to see what dr g suggests 

R xx


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## -Starflower- (Dec 29, 2009)

lalaby123 - Thank you, I'll do that.  GP can't do it as not funded.


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## ratsy (Dec 28, 2008)

Lalaby / shellie 

Ive had more blood tests back from doc i need your help 

cardiolipin /

IgG 

IgM normal 


liver /

anti-mitochond 
smooth muscle 
liverkidney
gastric parietal  = normal 

thyroid /

free t4 

tsh = normal 

electrolytes 

serum sodium 
serum potassium
serum creatinine = normal 

LFT /

serum albumin
serum alk.phos 
serumALT
serum bilirubin
serum total protein 
calculated Globulin = normal 

I think im still short of some can you tell me whats missing please 

Thanks 

R    xxx


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## Cozy (Jul 17, 2008)

Lalaby,

yes I've had my beta done, thanks for asking. It was 127.6 and I'm 10dp5dt, so I think that is ok. I am back again on Thursday for a repeat test, I just   they are doubling nicely.

I'm having intralipids again on Thursday.

Cozy


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## berry55 (Sep 4, 2008)

I just phoned Dr Gorgy and he said i have 2 phone back 2morrow morning to see if the results r back. He said they should be..... i would have just been sitting here waiting to recive them by post.... thats what i thought happens....


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## deegirl (Jan 17, 2009)

Zeka - don't worry about Dr G saying you don't need high dose folic acid.  I was in same situation and asked exactly the same question and Dr G said that lots of people in the Western World have this and it's nothing to worry about as long as you have a good balanced diet with plenty of folic acid.  He said that I could double the normal dose if I like, but that is nowhere near the high dose (5mg), the normal dose is 400 mircrograms.  Happy with his advice.  

Hope everyone well.

Dee


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## lalaby123 (Sep 21, 2008)

Ratsy I think u r still missing anti nuclear antibodies and factor v Leiden and prothrombin
also what is your tsh level?


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## ratsy (Dec 28, 2008)

Hi lalaby 

So im missing 3 i think the hos has done some of them im going to get my notes in nxt couple of weeks so il see what they have done 

My tsh level is    0.69 mU/ I    0.35-5.50 

Is that good or bad   

Thanks 

R xx


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## Zeka (Mar 7, 2009)

Thanks Dee, that's reassuring to know. 

Just out of interest how has anyone found being on 25mg prednisilone? The highest dose i've been on is 10mg and that made me want to eat so just wondering if I will be spending the next few weeks or more troughing anything in sight!!   

Cozy - do you have your intralipids at the FGA or arrange to have them at home?

...I have to say despite our appointment being somewhat chaotic yesterday I did like the fact that there were two pg ladies in the waiting room    

Z x


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## Cozy (Jul 17, 2008)

Zeka,

I have had my IVIg and Intralipids done at home with HCAH. It's much easier unless you live near London.

I am on 25mg Prednisolone and I cant say I've noticed any difference on this cycle. However, my last cycle, I was on 15mg and I ate like a pig. Infact I didnt eat, I just hoovered the food up. It was put in front of me and it was gone  .... I was def more hungry on that cycle.

It def affects people in different ways

Cozy


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## lalaby123 (Sep 21, 2008)

Ratsy your tsh is good 

Zeka i hav hated being on 25mg pred it did increase my appetite but  also has given me a moonface excess hair bloated tummy etc but then again I hav been on it for 4 months now so I can't wait to start weaning off next week as I reach 12 weeks

cozy glad to hear your good hcg level good luck with the retest   if u get Louise for intralipids say hi from me!


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## Skybreeze (Apr 25, 2007)

*New home this way >>>> *http://www.fertilityfriends.co.uk/forum/index.php?topic=222611.new#new


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