# Fertility & Gynaecology Academy (Amin Gorgy) Part 2



## dakota (Feb 6, 2007)

New home ladies, love and luck to you all


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## suitcase of dreams (Oct 7, 2007)

Just posting so I keep updated with the thread  

Suitcase
x


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## Choice4 (Aug 14, 2008)

Welcome to part 2 girls


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## gbnut (Aug 4, 2006)

Best of luck ladies

Susan x


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## sarahh (May 20, 2006)

Hi all, just lost 2 long posts - just testing to see if this works!  

Sarah x


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## sarahh (May 20, 2006)

Ok just lost another - seems to be when I try using the smilies above.  

Very quick one from me as I've spent about 30 mins trying to post on here - stupid laptop.  

I'm still waiting for DQ Alpha results, hopefully end of wk. 

Karen - great to hear from you, sorry about BFN.  Changed yr mind about last tx??  

Choice - any answers about miscarriage??  Think thats why you had hysto?? 

More from me soon, 

Sarah xx


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## Sprinkles (Nov 6, 2008)

Oh hi CaroB were you the lady with the blond hair or brown hair?  I was the northern lass with the black and white dress on who came in with her dh about 10ish.  I was dying to ask if either of you were on this website as well….  It does definitely sound like the intrapilids have a positive effect with both those other pregnant ladies.  Good luck to you and hope your 2WW doesn’t drag.

Hi to everyone else. 

I rang and spoke to secretary this morning and results are back, am waiting for them in the post so can book a telephone conference call with Dr G to go through them.


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## Choice4 (Aug 14, 2008)

My hysteroscopy was ok, nothing seen
I would be seeing Dr G tomorrow for some mock cycle to see if lining would improve


Humaria the cheapest place to get this is from Morrison supermarket, pharmacy £720
They would order it for you, i was told that all morrison are giving a discount on humaria because it is originally £1,100.

See you 2morrow


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## CaroB (Oct 17, 2007)

Hi Sprinkles

I was the one with the brown hair who was trying to email on her blackberry one-handed! I remember you and your DH. Good luck with your results.

Caroline


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## sarahh (May 20, 2006)

Hi all,  phoned Mr G today and still no results.  

Has anyone on here had LIT with Dr Armstrong?  Choice - I know you have - when did you have it done?  And did they re-test you to see if the LAD had improved/ turned positive?  From what I have read he doesn't re-test but i don't really understand why you would go to that expense and not re-test to see if it has worked or not.  

Right, off to get on with a huge pile of ironing!! How exciting!!  

Sarah xx


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## Choice4 (Aug 14, 2008)

Sarah
Yes I had LIT with Armstrong on 18th March, but he doesnot retest, but you can retest with Dr G
When I went to retest with Dr G, He said DH also needs to give his blood , but as he was not there at the time, I have not retested yet.
But I haope to do another LIT before my transfer, either with Armstrong or in Greece


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## Sprinkles (Nov 6, 2008)

HelenFS ~ hope all’s going well sending you 

Sarahh ~ sorry results not back yet, hope the ironing wasn’t too bad, I hate ironing with a passion

CaroB ~ hope 2ww going well, I was very impressed with your one handed texting skills I have to say.  Lovely to put a face to a member of FFs.  

Maarias ~ hope lining has come up how did scan go yesterday?

Choice4 ~ glad hysteroscopy went well, how did mock cycle go?

Well my results arrived in the post last night but they only contain the UK ones not the US ones so need to chase those next week.  However just doing the level 1’s seems to have been worthwhile as have tested positive for MHTFR (heterozygos) and ANAs, so need to talk that through but am guessing at least the Folgard.  

Off on a hen night tonight so looking forward to that as a distraction.

Hope everyone has a wonderful long weekend.


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## Choice4 (Aug 14, 2008)

Sprinkle I am glad you are getting some answers via your blood tes, lets see what the USA blood shows
As for me my TNF alpha was 51, I had 2humaria and it was 48, hen I had LIt with Dr Armstrong, the 2more humaria and it is now 53.8

I think that there may be something wrong with the RFU lab, as it seems a lot of people after humaria the value goes up instead of come down
Dr Gorgy said I should take 2 more humaria, but I am not sure If I would, I may retest in another lab or do IVIG


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## sarahh (May 20, 2006)

Choice, sorry your level has gone up not down.  What a pain in the backside!  I think my TNF-a is about 54 - its pretty high isn't it.  Seems strange it has gone up after LIT as well.......  

Why do you need DH to have a blood test when they repeat your LAD?  Surely has nothing to do with DH?? Or is it the way your blood reacts when mixed with his  

Forgot to phone Mr G today (was very busy power washing the patio) to ask him whether I should take my next packet of Cilest - have finished the first pack of 3 weeks of pill he gave me; don't know whether to have 7 day break or whether to carry straight on and take the next packet - I'm waiting for the DQ Alpha results so don't know whether we are cycling or not - am guessing not as I'm expecting to have to go to Greece.  Any thoughts anyone??  

Hope all the 2w waiters are getting on ok.  Driving yourself mad yet!  When does everyone test??  Does Mr G do a blood test or is it a HPT??  

Sarah h xx


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## annacameron (Dec 16, 2008)

hi ladies, just keeping the thread. 

Anna xx


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## CaroB (Oct 17, 2007)

Sarah - he recommends a blood test. I'm having it locally rather than travel into London for it. How much does Mr G charge for the DQ Alpha test as a matter of interest? That's one of the tests I haven't had yet.

Hi to everyone. Hope you're having a lovely bank holiday weekend. Trying to fill my 2ww with nice stuff and finding it easy to stay positive in the day, but night times are filled with nightmares of negative results. I guess that worry has to express itself somehow!

Caroline


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## sarahh (May 20, 2006)

Hi Caroline, the cost is £100 each - both you and DH/DP have to have it done as they see what DQ Alpha numbers you both have so £200 total.  

I still don't know whether to take my pill from the new pack today or do I just phone Mr G today - feel awful phoning him on a bank holiday sunday though.  Any advice anyone? 

Sarah x


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## Choice4 (Aug 14, 2008)

Sarah
I think you should phone Dr G, i would pm u his mobile, you can text him


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## HelenFS (Feb 25, 2008)

Sarah - Did you manage to get hold of Dr G? Hope you did and got stuff sorted. xxx

Sprinkles - Thanks for the   hun! Good news that the level test 1 alone have revealed something. Hopefully the level 2s will come back soon for you then you can get going with your telephone consult. xxx

Maarias - Hope your scan went well the other day and that your lining has improved? xxx

Choice - Really sorry to hear that your TNF is still high. I think you are right to retest with another lab. I've also spoken to a few people and their results have gone up on the retest. xxx

Caroline - How are you finding the 2ww? It is sending me slightly   too! xxx

Suitcase - Hope you are ok? xxx

Well I'm not far off OTD now but it has driven me mad. Dr Gorgy does a blood test and I would be able to get one done Wednesday 6th if I travelled to London but I just can't face the journey from Yorkshire. I spoke to him last week and he said to get it done locally but my GP takes at least 2/3 days to get blood results back   so I have decided that I'm going to do a HPT on Thursday 7th   . It will be 15dpo and is the day AF would be due and I have had a natural fet so I'm hoping this is ok. The hpt I was given by LWC said 9/5 and this would be 17dpo which is the latest I've ever been told to test so I'm taking matters into my own hands!

Love to everyone, 

Helen xxx


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## suitcase of dreams (Oct 7, 2007)

Hi everyone,

Helen - thanks for thinking of me  

Well, I'm here in Brno in Czech Republic. I had 14 eggs collected last Thurs, 10 were mature, 8 fertilised and yesterday they did PGD on the 6 best ones. So tomorrow I find out if I have anything to transfer. Is big risk but since egg quality (as well as immunes) seems to be a major issue for me, the clinic recommended the PGD - no point putting them back if they are chromosomally unsound anyway

Am trying not to think about tomorrow too much - will only know at 12.30 when I go to the clinic, whether any of the embies are good enough to be transferred

So, nervous times for me just   there will be at least to go back in tomorrow

Good luck to everyone else, especially to Helen for your impending test day (I'm not going to get bloods done, I will just pee on a stick and if I get a positive, will sort things out with Dr G after that....can't see the point in paying for bloods when the pee sticks work just as well  ) 

Suitcase
x


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## HelenFS (Feb 25, 2008)

Suitcase, 

Got everything crossed for you - I hope that you get a good bunch of embies that are viable and some to transfer tomorrow.    

Helen xxx


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## suitcase of dreams (Oct 7, 2007)

Bad news I'm afraid - although not entirely unexpected

I had 6 embies tested (PGD) for chromosomal disorders and all were unviable so nothing to transfer and this cycle has been a complete waste of time and (a lot of) money

Consultant here has recommended donor eggs and feels my chances of success with own eggs are slim to none based on egg quality of this and previous cycle

Feeling rather numb at the moment and not sure how to proceed....but life goes on one way or another....

Wishing all of you still having tx or waiting for test day, the very best of luck,
Suitcase
x


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## HelenFS (Feb 25, 2008)

Oh Suitcase, I'm so sorry to hear that   . I know it must be a lot to take in about donor eggs but is that something you will consider in the future? My thoughts are with you and I know you feel numb and confused now but as time goes on you will find the strength to carry on with tx if that is what you want. 

Sending you lots of love, 

Helen xxx


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## Sprinkles (Nov 6, 2008)

So sorry suitcase


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## sarahh (May 20, 2006)

Suitcase - so sorry to hear your news  ; what a horrible situation for you to be in.  You should take some time out & get over this tx and then think about what you are going to do.

Helen FS - why don't you contact a private hospital near you to get the test done - you would get the result the same day.  Some nhs hospitals also do blood tests if you pay privately.  

I spoke to Mr G and our DQ Alpha blood result is back and we have no match.  So we can have LIT in London with Mr Armstrong if we want.  But now I've read up lots and get a feeling it would be better to have LIT in Greece as they follow the Dr Beer protocol.    Got to speak to Mr G about it more tomorrow if I can get 10 minutes with him - he seems to be really busy at the moment!  

Choice - thanks for your PM - I tried his mobile but it was switched off so i just made a decision to carry on taking the pill!  

Well duty calls, off to do yet more ironing - DH def thinks it is my wifely duty to do it!!!  

Sarah h x


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## Choice4 (Aug 14, 2008)

Suitcase,
Sorry, but also at least you know where you are with your eggs.
I don't think donor eggs are a bad idea,( even though it may take time to come to terms with it), what is most important is to have a child.
But please take time to think over things


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## CaroB (Oct 17, 2007)

So sorry to hear your news Suitcase, and now you have such a difficult decision to make. I'm sure you'll make the right decision for you in time. If it helps, a close friend of mine never managed to get any eggs out of IVF and eventually went for donor eggs. Now she has a beautiful little boy who feels very much hers in every way.

Caroline


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## suitcase of dreams (Oct 7, 2007)

Thanks everyone for your kind words and thoughts

Already pretty sure I shall go for donor eggs, just need some time to let the shock pass and to work out how to best go about it

Will check in from time to time to see how you are all doing
Wishing you all the very best of luck,
Suitcase
x


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## annacameron (Dec 16, 2008)

Suitcase, I'm so sorry - that must have been a terribly disappointing thing to hear.     

However I think the clinic has acted extremely ethically and contrary to clinics in the UK who encourage people to go time after time - at least now you know and have proof that what looks like a good response and good fert etc actually gave rise to nothing that could implant.  And of course you have more grounds for thinking that your unexplained infert is chromosomal egg quality related, as opposed to chasing after immunes or similar.  It also makes a mockery of visual embryology.  

I think a lot of ladies who labour under the misapprehension that they respond well would be better served by doing PGD and I think in a year's time when you might have a LO, you will agree and be delighted you chose to take that route of investigation. 

I think you've done the right thing. 

Good luck for whatever you do next. 

Anna xx


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## amanda1971 (Jan 26, 2009)

Suitcase - as I said in my pm - so sorry to hear your news but do feel that you will have success with de.
Helen - good luck tomorrow - let us know the results (we did our intralipids/ivig together with Beattie) - keeping everything crossed for you!

I had ec today - only had eggs on left and have decided to icsi them this time - then I think if this one doesn't work, surrogacy will be the next step before moving to donor eggs.

Lol 
Amanda x


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## Sprinkles (Nov 6, 2008)

Hey ladies

Helen ~ good luck for tomorrow

Suitcase ~ hope you’re feeling a little better

Well results are in and I take back everything I said about being pleased that something was wrong.  Am currently going through the Dr Beer book to establish, what is wrong, what it causes and the tx I can have but a brief run down is:

Level 1s
•	MTHFR positive heterozygous (guessing clexane, baby aspirin, folic acid, B6 and B12)
•	Antinuclear antibodies positive 1:80 speckled (guessing prednisolone)

Level 2s
•	NK Assay 50:1 ~ 28.9% way above the 15%
•	CD56 ~ 12.6%
•	CD19+ CD5+ ~ 11.3%
•	TNFa: IL10 ~ 51.8% oh my word the limit is 30!!!
•	IFNg:IL10 ~ 29% 

Am guessing humira, IVIG or intrapilids on the cards as well but not sure, still reading.

Quick question is the Humira the drug you have to have had a TB test for before you can take it?


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## sarahh (May 20, 2006)

Hi Sprinkles - yes you have to have TB blood test b4 taking Humira.  I have similar TNF-a levels to you (54 I think) but I can't take Humira .... 

I am also MTHFR Heterzygous - Mr G said today would be higher dose of Clexane and Folic Acid supplement.  He didn't mention B6 / B12 but I have read about this so need to question him further about that   

Amanda - Mr G said today he was doing egg collection - so it was you!!  Good luck, hope your eggs fertilise well and you get some good news that they have done well overnight.   

Helen FS -       for you tomorrow.  Let us know.  

Well I spoke to Mr G today and I'm no further forward in terms of making a decision re: LIT in London or in Greece!!!  Need to talk it over with DH who is away till tomorrow.  Another of those "my head is going to explode if I think any more" decisions!!!  

Toffee Girl - if you check in on here then I hope your LIT went well yesterday.  I'd be really interested to hear how you got on.  Have a feeling I could be going in a few weeks...... 

Take care everyone,  

Sarah xx


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## Cath34 (Oct 14, 2008)

Hi ladies, I've just been reading back through the thread at all of your stories. I have also been to see Dr Gorgy last week for immune tests after many ivf failures!! I live in Wales and decided after 4 failures to look for someone else ad Dr G came recommeded. I find all of this immune stuff rather mind blowing!! I am constantly flicking through Dr Beers Book and am learning something new everyday!!! I am awaiting all of my results, including the ones from Chicago but not sure how long they really do take?
I would just like to wish you all the very best of luck with all of our treatment and I may bump into some of you at his clinic one day.


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## Choice4 (Aug 14, 2008)

Cath34
Welcome on board, i hope when your results come back they would have answers to your issues, let us know when you get them
Dr G would give you a copy so you can post it here if you like

Hello FGA girls, i can see you are doing fine
Good luck all


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## HelenFS (Feb 25, 2008)

Hi there, 

It's a BFN for me I'm afraid. My hpt with LWC is for Saturday so I'll do that but I know that this result is right. I'm ok about everything as I always said this was a bit of a dummy run with immune tx but it is hard not to get emotionally involved as time goes on. I've got plans though so I'm ok. I'm thinking of CGH to find out if our eggs/embryos are actually viable to go on to become a pg. I'm also going to have a hysterography to check everything is ok. 

Love to everyone, 

Helen x


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## amanda1971 (Jan 26, 2009)

Oh Helen - so sorry! What a bummer! 

Glad you are ok and are making further plans - I always find that as long as I have something else to focus on I can cope - god knows what happens if I eventually reach the giving up stage.

It might be worth seeing if you can get the hysteroscopy on the NHS. I went back to my original clinic in Feb and asked them what else could be done before the next cycle and they suggested doing one. I think Dr G charges about £1600 because of having to go to LWC to do it.

I am sure I will bump into you down there again sometime soon - in the meantime, be kind to yourself

Lol.
Amanda xx


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## HelenFS (Feb 25, 2008)

Thanks Amanda  

I am going to try get the hysteroscopy through my private health insurance. I've made an appointment with my GP tomorrow and I'm going to be cheeky and ask if she will say it is because of painful af or something similar as, of course, the insurers won't touch it if we mention infertility  . I also think our PCT has reopened the list for a free cycle so I might as well get our name put onto that and we would supplement the immune tx on top. 

How has it gone overnight? Any news on your embryos as yet? Wishing you lots of luck with this cycle  .

Helen xxx


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## superted (Sep 21, 2004)

Hi Girls

Not been on here for a while but just wanted to say sorry to hear your news Helen.

choice - how are you doing with yuor lining etc?

Sprinkles - glad yuo have got results when willyou be discussing further with Dr G.  Or have you already?  MTHFR I have inherited one gene so am currently taking high dose folic B6 and B12.  Need to have these for 3 months prior to treatment for best.

Girls - can I ask for those of you who have recently had ivig and intralipds with lovely Dr G.  Does he ever do them at weekends??  Also does he tend to do it in mornings or can you have an afternoon appt too.  Just trying to work things out for when I need to go prob next week at some time.

Thanks girls.

Superted x.


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## amanda1971 (Jan 26, 2009)

Helen - sounds good to me re.hysteroscopy. My NHS consultant put it down for recurrent miscarriages so that we could do it on NHS. 
My 11 eggs turned into only 8 mature, of which 6 fertilised with ICSI  this time. I am really hoping that I can get 2 to blast stage as that was the only time I got a bfp on a frozen cycle. Fingers crossed, but not holding my breath - find out on Sat.

Superted - Dr G doesn't normally do intralipids or IVIG on a saturday due to the time it takes. However, if he has a busy sat so that he has lots of people in he might do - it is probably worth asking. If you go in the week, he will more or less suit it to your timetable -intralipids tends to be quick and he can put them on "fast" for you! 

Lol.
Amanda x


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## HelenFS (Feb 25, 2008)

Amanda - Fingers crossed for you that you get some of them to blast     6 out of 8 is a great fertilisation rate though. Let us know how you get on?  


Does anyone know how much Dr G charges for the repeat NK assay follow up panel? I am trying to avoid another trip to London to be honest and have found that there is a Doctor's Lab in Manchester that I think I could use. I contacted RMU direct and they charge $542 for the follow up panel apparently (approx £360) and then I would have to pay for drawing blood and fedexing by the Drs Lab.

Helen x


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## beattie2 (Dec 30, 2005)

Hi Helen, sorry to hear your news. If you don't have any joy with your private health insurance it is definitely worth trying to get a hysterscopy/ laproscopy on the NHS- I had one done last year just to check everything was ok, amazingly didn't have to wait too long either

Amanda- great news about the 6 embies- I have everyhting crossed for you.

Best wishes 

Bx


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## beattie2 (Dec 30, 2005)

Helen- just seen your email about NK follow up, had mine done with Mr G the other week and it cost £310.

Bx


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## Cath34 (Oct 14, 2008)

Hi everyone, well I rand Dr G today ad some of my results have come back but not all. I have raised NK cells which are more than 1% but he wouldn't give me the figures as he said there are too many He also said my Cytokines were fine which is good I guess. 
Do any of you know what treatment I could be offered to lower NK cells? Is it only IVIg or is LIT an option too whatever that is, I'm not sure.
Helen, I 'm so sorry to hear of you BFN. Did you have any immune therapy this cycle? As regards you Insurance, I have had 2 laps on my insurance. It was investigative to see if I had endometriosis due to reallt bad af pains so you can definately do it and you only have to tell the ins company that you are having a lap for investigations for possible endo and they should just give you the ref no you need to give the surgeon. No more questions asked. Hope this makes sense.
Hi to everyone else and good luck to everyone cycling this month.


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## CaroB (Oct 17, 2007)

Hi guys

Sorry to hear about your result Helen.  Good to have a next step plan.

Sprinkles I felt exactly the same when my immune results came in. It's sort of good to know what's going on, but a bit gutting at the same time. Particularly when you've got a combination of stuff that seems to require all the drugs possible!

Good luck with your embies Amanda.

Hi and have good weekends everyone else!

Today was test day for me, but it is inconclusive. I have a low positive (25). I think that's pretty low, clinic says it should be between 50 and 60 today. Testing again on Monday, so this weekend will be an agonising wait. However this is further than we've got before and I really feel the immune treatment is the reason why, so overall its positive progress whatever happens next!

Caroline


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## gbnut (Aug 4, 2006)

Caroline fingers crossed for you. i know of someone that had 7 as a start and went on and had a healthy boy. so keep positive.

Susan x


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## Sprinkles (Nov 6, 2008)

Helen ~ so sorry for your BFN, I’m sure when I was there someone had had their blood drawn locally and sent to Dr Gorgy to send off to US.  So that could save you a trip down.  Wish he did a north and south clinic.  

Hi superted glad you asked the question about weekends, was going to ask the same thing as really struggle for time off work and travelling from up north.

Hi Cath34 I’m same as you constantly have the Dr Beers book by my side, amazing what you learn when you have to.

CaroB ~ so have everything crossed for you for the weekend and a stronger positive on Monday.

Well had telephone consultation with Dr G this afternoon, I have to say I’m still in shock at how he conducts his clinic and you can actually speak to him, it really makes you feel like you’re not just another number on a conveyor belt as NHS does.

Anyway its as I thought, need folic acid, clexane, baby aspirin, steroids, intrapilids, IViG and Humira.  

Currently on the search for a clinic that can do the TB test for me, otherwise have to trot down to London.  Also have to consider the LAD test too as this is the only one we didn’t have whilst there.  So the whole shebang really.  In a way am relieved that I now know what is wrong with me and I’m not going through numerous IVFs to be disappointed, but then again the ray of hope I had is disintegrating really rapidly as now it becomes a cost issue and how many, if at all, of all these drugs and treatment can we afford.  Tonight is the first time ever that the realisation of actually never being able to have children has hit me, tears are streaming as I’m typing.  Its so unfair, but I don’t need to tell you ladies that, so sending you a heap of  to help you on your individual journeys too.

Have a couple of questions if anyone can help out please?  Been recommended to have 1 course of intrapilids and 1 course of Ivig, asked if I could just have intrapilids but recommended to have a combination.  How many times would I need to have these after the initially 2?  Also believe there is option for a nurse to come to your house to do it though is that right, is it something called healthcare at home?  Anyone experience of this?

Also anyone any idea on how soon before tx you need to take the Ivig, intrapilids and humira for it to work in your system?

Hope everyone has a great weekend x


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## Choice4 (Aug 14, 2008)

Sprinkle
Sorry to hear you are feeling low at the moment, please know that you are not alone and the good news is that the immune treatment may help you this time, just follow the advise of Dr G, I know it would cost a lot of money but at the end of the day you want to know you have tried all your best

Yes healthcare at home ( 08703664640 or 01924245820)would come to the house to give you the ivig or intralipid, but you need to send them a prescription, I think if you buy the med from them the cost of sending the nurse to your house is included

For humaria it is better you get your prescription now and start the injection because you need to do it 2wks apart so it takes time
(NB: The cheapest place to get humaria is from any morrison supermarket pharmacy they would order it for you they are doing a discout at  £720

For ivig and intralipid Dr G would tell you when to do it
Goodluck


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## sarahh (May 20, 2006)

Helen FS - so sorry to read your news  .  Its a horrible thing whether you are expecting it or not as there is always a part of you that wishes.  You sound like you are doing the right thing taking some time out and sounds like you have a lovely trip planned too.  

CaroB -   for you that your result goes up over the weekend.  I think I'd be spending the weekend p'ing on sticks!!!    Seriously hope you don't go too   trying to wait for Monday. 

Sprinkles - sorry you have had a bad day.  It is so daunting when these issues come to light and you have to face the immune tx.  I have to have the whole lot of drugs too - including LIT - and I would highly recommend getting your LAD and DQ Alpha tests done - you may as well go for the whole lot.  

And i think it was me who had the blood drawn locally and sent to Mr G - was it a few weeks ago on a Tuesday??  I had the blood taken at the local hospital and couriered to Mr G - actually cost me slightly less than the train fare for DH and myself to London (we both needed bloods doing).  

Mr G said that I could have had the blood drawn late afternoon and could send it via Royal Mail special delivery (obviously have to check with local post office what time it goes off etc.) to be sent off the next day.  Obviously has to be packaged up properly / very securely if sending via Royal mail and I didn't trust it to get there without being broken but its always an option and saves a lot of money if you have a long travel to London.  

Right,  I must go off to bed, I'm shattered.  

I'm not getting very far trying to get my LIT sorted for 19th May!  Wish me luck!!!! 

Sarah x


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## HelenFS (Feb 25, 2008)

Hi Sarah, 

That is really interesting about you having the blood drawn at your local hospital. Did you arrange that through your GP or did you just arrange it through the phleubotomy dept. at the hospital? How did you/they know which blood vials (test tubes) to use? Did Dr Gorgy provide a blood work form like he does for The Dr's Lab? 

Sorry for all the questions but I'm not getting anywhere with TDL Manchester as they won't reply to my emails  . Did you pay the local hospital for blood to be drawn? I'm quite a regular at my local hosp. for bloodwork as I have regular thyroid checks as I see my consultant every 4 weeks and I don't know what they would make of drawing blood but handing it over! 

Sending you lots of luck for getting your LIT sorted  

Helen xxx


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## Cath34 (Oct 14, 2008)

Hi ladies, I spoke to Dr Gorgy and my NK cells have come back and they are elavated by more than 1% if that means anything to anyone, as it doesn't to me as he wouldn't give me the figures. He said that I could have a copy of the results but I am also waiting for other results to come back also. DQ Alpha, and others. 
It could have been me also that had blood arrive at the clinic, last Weds morning actually. I live in West Wales and had blood taken from my local hosp for me and my DH and I sent it Special delivery to arrive by 9am (v important). I rand my hosp and asked about blood being taken and they said it was a case of coming and taking your turn so I went by 4pm and then straight to post office to send. Dr G sent me to Dr Lab for all of the test tubesetc.. and transport packaging needed to send back to him not the lab and he also gave me the blood form. You must have blood form from him or they wont do it, plus every tube must be labelled with your name and DOB. 
When I start my cycle with him (God knows when) he said that I wouldn't need to go there everyday like the ARGC but if I could get the results to him by the afternoon he can tell me the med dosage. Maybe you ladies could do the same if you leave far away like me. 
Also, just a quick question, did you all go and see him for a chat regarding your results and  what treatment etc.. you need etc.. or did you do it over the phone? I dont really want to go down there, be charged if I can find out over the phone or do you think it would be beneficial for me to go incase I need to get drugs etc....  Also I find hime quite hard to understand at times!!!!!!


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## Sprinkles (Nov 6, 2008)

Hi ladies

Thanks for the info Choice, have been reading the immune threads from cover to cover today to try and get as much information as possible about all of this to try and get to a regularity of treatment/cost, and have to say a huge thanks for the information you've also provided on other threads its a wonderful help.

CaroB hope you're doing ok x

Sarahh yes it must have been your bloods, it was a few weeks ago on a Tuesday.. how spooky.  Thanks for the info on getting the bloods drawn locally.  If I can get my Quantiferon Gold TB test done up here will do same for LAD DQ Alpha tests and send down.  Good luck for the LIT scenario.

HelenFS Dr G said if we get blood drawn locally for LAD he will send us the vials and everything to go with it.  If you get the info from Dr G I was hoping that I could just go to my GP to get him to draw the blood or am I being very naive?  Sarahh would you GP not do it?

Cath34 I did test results over the phone, waited for the copies to come in the post then booked a time in his diary with secretary to go through, charge £90.


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## amanda1971 (Jan 26, 2009)

Hi All,

Just wanted to say a big "fingers crossed" and lots of positive vibes for CaroB - I bet it has been the longest weekend - I do have a positive feeling about it though.

HelenFS - sounds good news on the bloods for you - is it just LAD that you need to test now, did you do all of the others before?

Cath - I had the same thought as you about having the phone consultation rather than going in, but he was quite insistent that I needed to see him to discuss and, in fairness, there was a lot to talk about and I asked a million questions.

Sprinkles - re Humira - I was advised to have 2 months injections and maybe a combination of Intralipids and IVIG. I had 2 months and my levels were still ridiculously high so then I went to weekly injections for a month and had intralpids with still not much success. I have now had IVIG and  gone straight into the cycle without retesting - as there is nothing more I can really do for them - maybe surrogacy will prove the only option for me, who knows.

I had 2 embies put back in yesterday so OTD is Wed 20th May - please,please, please let this be the one!

Lol,
A xx


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## Cath34 (Oct 14, 2008)

Thanks Amanda, I'm glad you told me that its best to go there to discuss the results as we can have a much better chat face to face. Does he give you a prescription to start whatever treatment is necessary straight away to come away with? I'm thinking if I need IVIg due to my NK cells would he prescribe it so that I can have health care at home? I may well need other treatment also but I'm waiting to see what the results say at the end of the week. I dont want to waste time going backwards and forwards really as it such a long way.


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## amanda1971 (Jan 26, 2009)

Yes I am sure he will give you a prescription there and then for whatever you decide to do. I have only had IVIG with him at the clinic, so don't know too much about how it works with Healthcare at Home. He is pretty open to suggestion and will be flexible around however you want to do things xx


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## CaroB (Oct 17, 2007)

Hi everyone

Thanks for all your messages of support. HCG had only risen to 27 today, so it's a biochem after all. After our initial positivity on Friday we did a couple of hpts over the weekend and when the line didn't appear until about 10 mins and wasn't any darker we were expecting the worst, but you can't help hoping just a little bit can you?

Have a good week, and good luck with all the blood tests etc. We'll soon be able to draw our own blood the way we're all going! Do you reckon you can go on a course

Caroline


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## Sprinkles (Nov 6, 2008)

Hi Ladies

CaroB ~ so sorry   was really praying for you today.  If you find a course I’ll be on it with you, and good luck for whatever you decide are your next steps x

Amanda1971 ~ sorry your levels didn’t come down with the humira, but fingers crossed for you anyway and as you haven’t retested they could have reduced.  Praying this is your time x

I had some really positive reactions from people today including my clinic on what I’ve been doing, also think I’ve found a nurse who’ll do my TB test.  Anyone any ideas on how long these test results take?

Also obviously Dr G recommends best plan for optimum chances but has anyone sort of cherry picked a couple of things and not done them all?  If I’m honest I could go with the humira if time allows (if I can get accepted for FET this month I’m going for it), steroids and intrapilids, am a bit dubious about IVIG as it’s a blood product, but mostly I’m not sure about the LIT.  We can have the test, we can have LIT with DrA if it comes to that, but we cant do the donor scenario so I’m just wondering if its worth doing it at all?  Any thoughts?  Anyone else not done LIT but been advised to?

I also have to apologise as I do feel that I do ask rather a lot of questions of you all, and don’t mean to be a pest.


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## HelenFS (Feb 25, 2008)

Hi everyone, 

Sorry I've been AWOL for a few days. When I stopped organising the next cycle and actually took a breather I had a bit of a wobble over the BFN. Anyway, I'm back on track now! 

Amanda - I'm so hoping that this is your time. Hope you are feeling ok and taking it easy. You have done everything you can do for those embies. I am presuming you got blasts? Good luck  
I haven't had LAD, MTHFR or mine and DHs DQ Alpha (I never know if that is the same as LAD  ) as I had my level 2s done at ARGC and they don't test for everything do they? In addition to this, I wasn't retested for my NK levels before the embies went back in as Dr Gorgy said there wasn't time! I should have pushed for them really so I went into the 2ww not actually knowing if my NKs had been reduced. Now, after a BFN, I want to retest and, knowing this could open a can of worms for me, I'm feeling a bit silly. To be honest, I do believe my immune system was successfully suppressed by the intralipids and the prednisolone. I know this will sound really crazy but I have felt/ had ALOT of changes in my body: I suffer from eczema and normally my entire body is on fire and I itch constantly - at the moment my skin is completely clear and more importantly I am not itching. My vitiligo (white patches on the skin through loss of pigment) has almost disappeared which reinforces the theory that vitiligo is caused by the body’s own immune system is attacking the pigment cells. Also my thyroid levels have adjusted despite me being on the same prescription since January. 
Anyway, Dr Gorgy was sending me the bloodwork form and tubes yesterday so I am hoping to get them today so I can have blood drawn so I am off work again! Organising all this is like a full-time job! 


Caroline - I'm really sorry about your biochem   xxx

Sprinkles - Good news that you might have found a nurse to do your TB test. I have to admit I am still a bit dubious about IVIG and maybe when I get my results back for my repeat NK cells I might have been better off doing it. I just couldn't face it and Dr Gorgy was happy for me not to do it when it was a FET cycle anyway and the chances of a BFP were low. I have to believe that it was my embies that weren't up to scratch (I don't think they were). If I'd have done a fresh cycle I would have forced myself to do IVIG though and if the retest comes back that my levels weren't reduced then I'll have IVIG on my next cycle. xxx


Hi to Sarahh, Choice and Cath - Hope you are all ok ladies? xxx


Helen xxx


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## amanda1971 (Jan 26, 2009)

Hi Helen - Understand completely your BFN wobble - it doesn't get any easier does it! Great organisation with all of your tests. I don't think I had the MTHFR done either - but Dr G sent me a prescription for Folic Acid 5mg so I have been taking that - I think that's the treatment? I didn't get to blasts sadly, not enough good quality embies - and none to freeze this time either. But hoping and praying that the ones in me are good enough!

CaroB - complete bummer! I am so sorry. What a horrible waiting game it was for you.

Sprinkles - good luck with your TB test

Lol
Amanda xx


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## superted (Sep 21, 2004)

Hi Girls

Can I ask if any of you are taking clexane and steroids and asprin.

If so are you taking them all prior to et.  

I have been used to taking the clexane after et but today when I went for my intralipds I was told to start the clexane and others now.  Wondered what any of you had done.

Not that I am doubting Dr G but just thinking surely your lining is building up and you dont want to thin it before et which is what the clexane does doesnt it?

Superted x


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## CaroB (Oct 17, 2007)

Hi all 

Superted I don't think the clexane thins the lining, just your blood. My lining was much thicker this time at egg collection and I had had the humira for 2 months and the aspirin, clexane and prednisolone from day 1 of the cycle (although I had IVM so everything happens earlier in the cycle than when you stim). One or maybe a combination of those must have improved the lining, although I don't know which and neither did Dr G when I asked! My gut instinct is that it was the aspirin but I don't really know why.

Helen I'm glad to hear you're back on track.   I'm thinking about getting the DQ Alpha and LAD tests done now too (I don't know whether they're different either) . I didn't have time to retest after the intralipids either, so I don't know whether they had the desired effect or not. I do think all the stuff had some positive effect though, just maybe not quite enough, and of course I don't know which bits worked and which didn't so I don't know which to replace with other stuff and which to leave well alone!

Sprinkles I'm thinking about ivig for next time but not really sure how I feel about it either and of course it's loads more expensive than intralipids. Dr G is more than happy for you to cherry pick, in my experience maybe a bit too happy and sometimes I wish he'd just say 'no, you NEED to do this, it will work' but of course he can't!!

Amanda good luck. Hope lots of good stuff is going on in there!

Caroline


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## sarahh (May 20, 2006)

Hi girls, well no further with the LIT so guess I won't be going next week!  

CaroB - so sorry it was a biochemical pg.  Sending you huge   

Superted - haven't been on immune cycle before so can't help you but sure I read that start Clexane on day 6 of conception cycle - does this mean day 6 of stimms not sure - sure someone will!! 

Helen - sorry you had a bit of a wobble - totally understandable I'd say - its impossible not to think about what might have been every time isn't it?  Glad you've picked yourself up.  

Amanda - hope those embies are snuggling in nicely   

Right, off to bed, sorry no more personals!  

Sarah x

Just read post by CaroB - yes LAD and DQ alpha are different.  It also depends if you have ever been pg before as everyone has negative LAD until they have a pg from what I understand.  The DQ Alpha merely determines whether you can use DH blood or not if you do need to have LIT.  I THINK!!!!!  Don't take my understanding as gospel tho!! x


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## amanda1971 (Jan 26, 2009)

Hi Superted,
I had clexane, prednisolone and aspirin from about day 5 of stims. The clexane started at 20mgs and after egg collection went to 40mgs. 
Doesn't feel as though too much is going on inside me at the moment but it is only 4 dpt (3 day transfer) - I am obsessing every minute!
Lol
A x


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## superted (Sep 21, 2004)

HI Girls

Thanks for those reassuring answers.

I was worrying really for my lining but seems like this is the way to go prior to et so I will begin tonight. 

Amanda - good luck for 2ww.  Just out of interest did Dr G say 20 mg of clexane prior to et and then double to 40mg after et.  He has told me 40mg all way through.  

Sarah - hey why not the LIT?

I do like Dr G but sometimes he just says yes yes yes and you know you want him to say no.  sometimes I wonder if I am making the suggestions and if I had not would he?  Do you know what I mean girls.  Anyone else of the same thought?

Love superted x


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## amanda1971 (Jan 26, 2009)

Hi Superted - yes, 20 mg clexane before embryo transfer and 40 afterwards. I know what you mean about Dr G agreeing, but I think that is only when the suggestions we make are sensible. He has said no to me on some things. I, also, have to add - he was amazing at my embryo transfer - really lovely and kind and supportive.

Lol
A x


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## superted (Sep 21, 2004)

HI Girls

One other thing are there any of you under Dr G who has taken both intralipds and ivig prior to et?  Dr G suggests but cant ever get an answer why you would really take both.  I thought they did the same thing?

Any ideas anyone please?

Superted x


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## amanda1971 (Jan 26, 2009)

I had intralipids with Humira to see whether the combination would bring down my TH1 levels. It didn't work so then I went on to have IVIG before EC to try and do the same thing. I think that where, in the past, people might have been recommended to have 2 ivigs, in order to make things cheaper, some are opting to have an intralipid instead. Not 100% sure though, I knew I wanted IVIG as that has more data than IL.


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## superted (Sep 21, 2004)

HI Amanda

Yes good thought there intralipds if the new kid on the block and although good results have been seen ivig has been around more etc so I think I would def like to have the ivig and adding the intralipds at a fraction of the cost cannot do any harm.

By the way  is the ivig for you to bring down your th1 levels?  I decided to have humira so I am hoping the combination of the 2 may do something for me.

superted x


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## superted (Sep 21, 2004)

Oh Girls

One more question anyone know what a follow up consultation with DR G is.  I know the initial one is £120 but just wondered.  Or have none of you had to have a follow up?  

I seem to email him and phone him and he replies and so have got lots of info like that.

superted x


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## Sprinkles (Nov 6, 2008)

Hi 

Sarahh ~ think you’re definitely right on the LAD and DQ alpha thing.  The LAD test tells you whether you need extra blocking antibodies or not, and then the DQ alpha tells you whether you can use your DH blood to get them.

Amanda1971 ~    

Superted ~ I’ve been advised to have one session of IVIG and then one session of intrapilids before ET.  The NK test was done and gives results back based on 2 sessions of IVIG bringing levels down to acceptable levels, but rather than do two expensive options am guessing Dr G makes it one of each.


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## Cath34 (Oct 14, 2008)

Superted - I am going back to Dr G next week for a follow up to discuss my results and have been told that it cost £90. I understad that it is better than a conference call to discuss it as I find him difficult to understand and also to absorb the info as its a mine field!!!


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## sarahh (May 20, 2006)

Hi, yes follow up is £90.  Have to say seems a bit random when it is charged though.  I have paid twice now for a follow up.  Bit annoyed actually as one time was only 20 min chat but then I guess that is 20 mins out of his busy schedule - but when does talking over things become part of the IVF costs?!!!  

Helen FS sorry didn't reply to your q's yesterday - I arranged blood test thro local hospital phlebotomy unit - GP won't take bloods so I tried to get resourceful and found out that you can pay privately at the NHS hospital.  Is very easy when you get the right contact - its just getting the right contact that is the hard bit!!!!!!  

Superted - I've replied to you on Investigations & Immunology thread about IVIG & Intralipids.  

I also believe that levels of Clexane depend of various results - for example i think because I am MTHFR Heterzygous then I have higher dose of Clexane - it definitely depends on your blood results for various things so don't worry you are on higher dose all way thro.  

Must get to bed, DH getting very cross with me spending time on here!! 

Sarah x


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## karen (Mar 23, 2002)

Hi all,

I am following the thread but never seem to find time to post!

Quick one as on way out. 

I had ivig and intralipid pre ec. Reason is ivig is proven but good results with intralipids so he wants to covver all bases. I never thought to ask why not just ivig then. I have asked a couple of times why ivig at all and he always says because its proven so he wants to cover the odds until he has enough confidence in intralipids.

Re clexane. I had 20mg pre ec and 40mg after.

Follow up I thought were free?  They are free at the argc where he comes from and he seems to follow their practises - but i may be wrong.

karen
x


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## karen (Mar 23, 2002)

Forgot to add that at our follow up I declined TNF testing and humira because I'd already had it done and I didnt want to go on humira and I asked if I could just have intralipids instead of ivig for cost reasons and he did agree.


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## amanda1971 (Jan 26, 2009)

Hi Karen,
The Humira is an interesting one isn't it. I have had 8 injections now and it didn't seem to bring my TH1 down (last time I tested it was at 4. I was thinking about remicade next time to see if that made a difference, if this cycle is a bust.  What is your situation now? What are you going to do next. I had a long chat yesterday with a potential surrogate as well, so I feel as though I do have some back up plans!
Lol
Amanda x


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## karen (Mar 23, 2002)

Sounds like you have plans which is good but     that you wont need them. When is test day?

We're not sure what next steps are. Give up or have LAD test and then decide. Do you have the LAD and DQ test at same time? Surely it makes sense to check if you have antibodies and only if you don't is it worth testing if you and DH are a match but Dr G gae me the impression its all done at the same time?


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## Cath34 (Oct 14, 2008)

Hi Karen, I had all immune tests done at the same time with Dr Gorgy, and my DH too. He suggested to us to have evrything tested including LAD and DQ Alpha. Even LAD is only really for ladies who have been pregnant before, and I haven't, he said that he had lunch with the lady who co wrote Dr Beers book (Meed) I think and she says that evryone should be tested for LAD as we could have been pg v v v early on and didn't know as our period came. I asked him if she had convinced him as he didn't agree before, but he said that he saw her point and so we went ahead and did it anyway. My results are in the post as we speak and I dont know what they are yet!!!!! My follow up is next Tues!! Cant wait. I hope this makes sense??


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## amanda1971 (Jan 26, 2009)

Karen - my OTD is 20th May - and everyday is going Sooooooo slowly at the moment! Good luck with your tests - let us know how you get on xx


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## karen (Mar 23, 2002)

Cath but why do they test LAD and DQ alpha at the same time? Why not test LAD and only if need to do you teset DQ Alpha? How long do the results take? You seem to have been waiting a while.

Dr G does seem to like "name dropping" . I do hear alot alot "when I spoke with x - do you know x?" 

Am just sending some opinions on LAD testing to DH for reading.

How are you feeling Amanda? Not long to go. I'e now got to the stage where I prefer the 2ww to testing and had a 2.5 ww last time!

x


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## karen (Mar 23, 2002)

Another question. How long do you do LAD test and TNF before you cycle?

x


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## Cath34 (Oct 14, 2008)

Karen, I dont know why really, he just said that we needed to, to cover all bases I guess. This is all so new to me and I cant question anything yet as I dont know enough yet. When I went on 28th April he tested NK and many more and then th wekk after my DH and I had to have bloods done and set on to him to be sent to US and now the 2nd lot of results are back he's sending them out together. I asked him about my 1st set of results and he said that I have raised NK but Cytokines are normal. No figures given though so am none the wiser really about possible treatment, I'm guessing IVIg and Intralipids but Not sure. My follow up is Tues.


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## Cath34 (Oct 14, 2008)

I have no idea sorry. Were you at ARGC and then moved to Dr G?


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## karen (Mar 23, 2002)

Yes I was. Its not easy to understand is it?!


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## amanda1971 (Jan 26, 2009)

Hi Karen - re LAD test and TNF test before cycling - I think it really depends on what your results are. If you need to have treatment then you would want to do that before you start your cycle. I had my tests in Feb, went to Greece for donor LIT twice in March and had Humira through Feb and March and started my cycle in April. My TNF was still high at my last test - and I didn't retest my LAD as I decided going twice to Greece was enough treatment for me and I wouldn't go back for a third regardless of the result. Maybe I will be regretting these decision later on this week - who knows!

Now for a quick 2ww whinge! Argh!!!!!!!!!!!!!!! Why is it soooo hard!!!!! I have no idea what, if anything is going on inside but am obsessing 24/7 about it! And this time my trigger shot before EC was 3 pregnyl, so by my working out it is still probably in my system now and any symptoms could just be a result of that. I should maybe say now, that if it is a BFN, please ignore any of my posts for at least 72 hours as I may well just get blind drunk for 3 days!!!! So good to know that I am mature and sensible about this whole process!!!

Happy Sunday All,
Amanda x


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## beattie2 (Dec 30, 2005)

Evening ladies

Hope you are all ok

Just popping on say hi and  to wish Amanda the best for OTD- are you doing the blood test or a HPT? The ones that LWC give you do not work (well mine didn't) so don't go by  it if it is a negative.

Just reading some of the comments about DQ Alpha and blocking antibodies, I have to say that before I got into it I was a sceptical but my experiences have caused me to believe there is definitely something in it all.

Best wishes 

Bx


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## amanda1971 (Jan 26, 2009)

Hi Beattie,

I didn't get an HPT from LWC, but I am due a blood test on Wed. However, having been spotting all weekend, it now looks as though AF is here despite the gestone! All of my symptoms have gone, so I guess the huge HCG trigger I had (15000) is now gone and I am back at square one (only 15k poorer!)

Where to go from here I wonder?!!

I have a lovely lady lined up for surrogacy, so maybe that needs to be my next step. Or maybe my eggs are just old, tired and not viable babies? It is so difficult isn;t it knowing when it is time to give up!

Better luck to everyone else anyway,

Love
A xx


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## karen (Mar 23, 2002)

Amanda could it be an implant bleed? its a long time to bleed before test day AND on gestone. You havent stoped meds have you? Have you spopen to Dr G?


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## amanda1971 (Jan 26, 2009)

Its 12 days since egg collection - and I normally come on 10-12 days post ovulation - so it is pretty normal timing for me. I have got loads of cramps with it and sore(.)(.) have now disappeared, so I am fairly confident (sadly). I am still doing meds and will keep on them until after the bloods on wed. 

Thanks for hoping for the best though Karen
xx


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## karen (Mar 23, 2002)

Keep doing them I've seen it happen before. Could you ask for bloods tomorrow?


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## karen (Mar 23, 2002)

Girls some of you mentioned emailing Dr G. Could someone let me have his email addrses please? Assuming he responds! I'd rather put my thoughts on paper than try and explain to him on the telephone!


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## Cath34 (Oct 14, 2008)

Good luck Amanda, I hope your blood test is + The 2ww is so horrid isn't it as we are so tuned into our bodies! All the best anyway.


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## Cath34 (Oct 14, 2008)

Got an appointment with Dr G tomorrow to discuss my results. Scary stuff, not sure what lies ahead! My LAD came back as a weak positive I have no idea what that means?


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## Sprinkles (Nov 6, 2008)

Hi

Just wanted to say have fingers crossed for you Amanda1971 and am hoping that spotting is indeed implantation bleed and you get your BFP  

And good luck for consultation tomorrow Cath34 x


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## HelenFS (Feb 25, 2008)

Amanda, 

Hope you are ok? I've got everything crossed that it wasn't af coming and that you get your positive tomorrow.  

Lots of love
Helen xxx


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## sarahh (May 20, 2006)

Cath - weak positive usually means LIT I'm afraid.  

Amanda - really hoping that you have a surprise BFP tomorrow     

I'm trying to sort out my LIT for 2nd June - found out today that DH's screening tests will cost £300 and not sure if they need to be done again before the 2nd LIT - if they do its just not viable to spend all that!  Maybe I'll go for donor LIT after all.....!! 

Right, off to find my bed, I'm a tired bunny tonight.  

Sarah x


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## karen (Mar 23, 2002)

Amanda    

Sarah are you doing LIT in Greece or UK? £300?!! what are they looking for?


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## amanda1971 (Jan 26, 2009)

Well it was a BFN as expected but I had a really good follow up immediately with Dr G discussing the cycle and what to do next. He was fab!

I can't do any more of the immune treatment now. We threw everything at that cycle and it is just not financially viable to do that again or investigate further. 

We discussed use of a surrogate and even putting embryos in her and me at the same time for the next cycle to get the most out of my money.

DH is ready to give up and face childless life now and maybe that is actually what we will do. There are only so many times you can bang your head against a brick wall . So, life feels pretty hard and hopeless but I am sure it will get better soon.

Thanks for all of the goodluck wishes and all the best to everyone on here

Lol
Amanda x


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## Cath34 (Oct 14, 2008)

Oh Amanda I am so very sorry. Its the worst feeling at the moment but things will get better and you have got a surrogate to think about which is more than most people have. Fingers crossed you can go again. Have you many cycles with immune treatment?


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## amanda1971 (Jan 26, 2009)

Hi Cath
No - just that one with all of the immune treatment. 2 fresh and one frozen cycle before that without any immune treatment. Feeling a bit better today and planning next moves. 
Good luck with yours
xx


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## Cath34 (Oct 14, 2008)

Thanks Amanda, I'm glad you feeling a little better today after sleeping on it. Try and stay positive and good luck, we're all in this together remember. x


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## HelenFS (Feb 25, 2008)

I'm so sorry to hear that Amanda, I really hoped that this was the one.  

I'm happy to hear that you had a good consultation with Dr Gorgy though and it sounds as if you are feeling a bit better and getting on planning your next moves. I hope, whether you decide to do with the surrogacy thing or another cycle for you or both, it works for you  



Helen xxx


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## beattie2 (Dec 30, 2005)

Amanda- I am really sorry to hear your news . Have sent you a PM and and am thinking of you 

Hello to the rest of you too

Best wishes


Bx


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## gbnut (Aug 4, 2006)

Amanda     life really sucks!!!!!!!!!

thinking of you both and remember we have all been through this and are here for you if you need to vent.

take care 

susan x


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## Sprinkles (Nov 6, 2008)

Amanda  so sorry xxx


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## CaroB (Oct 17, 2007)

So sorry Amanda. I haven't been on much this week as work has been really busy, and I've been glad of it as it's taken my mind of our recent result.

I'm gutted the immune treatment didn't do the trick for you. Good luck with whatever you decided to do next   and I really hope you get there in the end, however you do it.

Glad follow-up with Dr G was so good. He rang me last week, totally out of the blue, just to ask if I was OK and what I was planning to do next! Isn't that lovely. DH and I will go in to see him in a couple of weeks I think - I don't trust myself not to cry in a follow-up just yet! Pathetic, I know. I'm blaming it on the hormones!

Take care. Hi to everyone else and hope you all have a lovely long weekend.

Caroline


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## Angels4Me (Apr 8, 2006)

im looking for humira to take today/tomorrow. Im really worried now as someone here said it is related to birth defects and should not be taken prior to conception! Dont quote me on this but it was someone who works in the medical profession.

Anyone know about this....am now worried


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## HelenFS (Feb 25, 2008)

Sorry about this 'me' post but if anyone can shed any light on this I'd be eternally grateful!

I had my original immune tests at ARGC and they were:

CD56 - 25.0

NK Assay
50:1 = 18.3
25:1 = 13.0
12.5:1 = 7.7

I've just had a failed FET with prednisolone, clexane and intralipids and was retested and these are my results

CD56 - 16.5 (it has come down a bit but not enough   ) 

NK Assay
50:1 = 24.8  
25:1 = 17.2  
12.5:1 = I was too shocked to take this in properly!

My question is - why I don't get this at all. Why, when my CD56 has come down a bit, has my body managed to increase its killing power because isn't that essentially what has happened? I am completely confused and Dr G is away so I can't even discuss it with him. I'll ring Clarissa back and check again (she'll be so hacked off with me!) but I know they are correct as I got her to repeat things twice. 
ARGH    
Helen x


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## beattie2 (Dec 30, 2005)

Hi 

Angels- I did some research before I took it and the studies I came across indicated that there was no evidence that Humira causes birth defects. In the US it is graded B for safety in pregnancy (with A being the safest) As far as I'm aware some women with condtions like severe Chrohns take it through out pregnancy. The manufacturer will monitor women who take the drug throughout pregnancy. You could do a google search and hopefully you will come across the safety study.

Helen- your results are a bit of a mystery!  I have had regular blood tests throughout my pregnancy so far, both the actual CD56 level and killing power have come down dramatically, but in one test the CD56 level was only4.9% and their killing power borderline at 14.1 %(50:1), so a similar situation. I never got of bottom of why.  Maybe the remaining killer cells were super killercells? Really not sure.

Amanda 


Bx


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## Angels4Me (Apr 8, 2006)

thanks for that Beattie - can i ask if you feel Humira helped you. Im collecting my steroids and clexane and not sure about the humira...i will look on the net

thanks again


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## beattie2 (Dec 30, 2005)

Yes I think the combination of Humira and LIT definitely helped- for the first time ever our embies had proper size sacs on the early scans and so far my NK cells have been within acceptable limits (another first!).

Here is a link to one of the Humira studies

http://www.otispregnancy.org/pdf/AI_AAD_Humira.pdf

This info taken from the Yahoo Reproducive Immunology website might also be of interest:

http://www.medscape.com/viewarticle/586961_5

Best wishes

Bx

[red]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[/red]


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## Angels4Me (Apr 8, 2006)

I just posted this above as i found it helpful....still scared but think i will take next cycle as we are ttc naturally with prednisiolone, clexane and baby aspirin.....not sure if this will be as good as with Humira (now ive read the study)....thanks for your comments....i will read again


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## amanda1971 (Jan 26, 2009)

Thanks for all of the nice messages all.

CaroB - I know exactly what you mean about being unable to cry in a follow up - it is so horrible isn't it, I am not normally a teary person, but at the moment I just keep crying - its ridiculous. I took a list of questions with me and Dr G went through them thoroughly with me.

Angels - Just to let you know I am also going to ttc naturally this month. It seems to make sense having had all of the immune drugs so recently (humira, LIT, IVIG etc) and I am also using prednisolone, clexane, baby aspirin and progesterone. Bit of a long shot for me, but any shot makes me feel better than no shot!

Happy Sunday all!

Amanda xx


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## Cath34 (Oct 14, 2008)

Amanda, so sorry hun. Did Dr G give you any explanation as to why he thought it didn't work this cycle with all the immune treatment you had? Does he have any further suggestions regarding what he would do next cycle if you go again? Also is this your 1st cycle with Dr G?


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## Sprinkles (Nov 6, 2008)

Hi ladies, hope everyone had good bank holiday weekend and nice weather.

Angel ~ how did you get on with the Humira did you take it?  If so everything ok?

I'm off to see Dr G on 2nd June to go through next stages, have in my head what I do and do not want to do but will wait until I see him.  Definately not going to do the LAD though I think as cant do the Greece trip so possibly ignorance is bliss on that one.

Have started on the baby aspirin, high dose folic acid and fish oil capsules as well this weekend, heard they could be good for NK cells too, and the best thing is they dont taste of fish at all!  I hate fish.


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## Angels4Me (Apr 8, 2006)

Hi all

Beatty: thanks for the links to humira research.....v. helpful  

I havent bought humira yet...although i think it i will have to give it a chance. Although Dr G prescribed, I have wondered if (or rather hoping) that Prednisolone, baby aspirin, clexane, zita west preconcep vits and calcium will do the trick. I do try to spread the vits out across the day but wonder if I can take so many things at once. I have been on TCM...stopped now cos not sure if can take with other meds. I take two agnus castus tabs per day, will stop tomorrow as i think ovulated today (can anyone confirm if its safe to take a.castus and T.chinese medicine with above drugs? - I really do not know) I have stopped the TCM in case. Dont think accu lady will do whilst on clexane...again, not sure have to check

We have been BD for about four days(CD14 today)...as been to stay with friend in Peak district bank hols...was lovely.....think better to concieve away from it all. ANyway, not expecting immunes to kick in for a number of weeks....i dont know this just reading Dr Beers book about major point for peeps with 3 failed ivfs (not me by the way) highest percent get pg after 17.4 weeks after commencing immune tx....so feeling optimisitc but v. impatient now  

Im wondering if ive messed the above drugs up by not taking the humira yet...but hoping like others that steroids may be sufficient! ANyone know if I can take Humira any day of cycle? I know its two inj 2 weeks apart.

Im not up with all this yet but reading dr beers book more now i have learnt bit more.

I find the clexane needs bit horrid, not very fine needles. Bruises too. And one site was bleeding this morning..think i caught it with a towel still bleeding a little couple of hrs later. (I did night before) I know prob wouldnt have without clexane/aspirin.

Amanda, good luck with ttc naturally with immunes

Blimey.....dum de dum....how long do we have to wait(for something to happen).....................phew


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## Angels4Me (Apr 8, 2006)

err....add iron, flax seed and fish oils to that....just have to leave some of it out now and again

errrr....forgot to take  blue algae

arrgghhhh....dyu think its getting to me


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## superted (Sep 21, 2004)

HI Girls

Thought I wuold put this thread back on the first page.  

Sprinkles how did your appointment go with Dr G tuesday?

Love superted x


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## Choice4 (Aug 14, 2008)

Yes superted
This thread has been quite for a while!!!
I had LIT in greece on 2nd June, going back on 30th june and retest in 4wks


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## Sprinkles (Nov 6, 2008)

Hi girlies

Hope everyone is ok, and Choice good luck with the LIT, fingers crossed it works.  Bet it was roasting in Greece!

Appointment went well on  Tuesday, however poor Dr G was on his own as secretary wasnt well.  At one stage he was answering the phone, answering the door and hooking up infusions all at the same time, really felt for him.

Basically agreed to go with the clexane, prednisolene and infusions for my FET.  Didnt manage to get the TB test done on NHS, despite some very helpful nurses, so had that done in London whilst there, even though not going for the Humira on this attempt, but its there if this cycle isnt successful.

Then have been to clinic in Manchester this morning to collect my schedule and burserelin, and they were really receptive to everything that Dr G had recommended which was wonderful and a relief off my shoulders.  So just gearing up to take first injection in about half an hour.  Here comes the buserelin blues....


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## Choice4 (Aug 14, 2008)

sprinkle, yep greece was hot hot hot!!
I am happy your clinic would work with Dr g's protocol
I know someone that did not have Humaria, had Ivig,/intralipids/ steriods  and got pregnant naturally, she is Gorgy too.

I feel sorry for him working alone, I told him if he gets me pregnant I would work for him.
How Jane Reed works for Dr Beer, and she used to be his patient
So we would see, he is a nice man


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## karen (Mar 23, 2002)

Hi all,

Things are quiet at the moment aren't they? Choice it'd be fab tyo have you work for Dr G, you know so much we could quiz you when he's busy!

I called today and got a very pleasant girl with an English Accent - a temp? Or a new sec?


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## Choice4 (Aug 14, 2008)

I called today and got his sec "clarisa"  and he transfered me to him
so it looks like she is back.

Yes when I start working for him, I would have a website for all the questions and answers , baby reunion, party, picnics,etc
we would turn his office into a baby party zone!!! Ha ha!!


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## karen (Mar 23, 2002)

sounds good - only problem would be could you do all that AND look after the little one he'd got for you?


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## Choice4 (Aug 14, 2008)

I would joggle them all around!!!


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## annacameron (Dec 16, 2008)

has he still got the south african sec? he was in terrible disarray when I was last there. no sign of her.


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## Choice4 (Aug 14, 2008)

I popped in to see Dr Gorgy today
Yes the sec is still there , she was of sick for a week so he got a temp,
( I wonder how long she would be there for!!)

I went in this morning, I find the morning quiter than the afternoons, so I had all the time  I wanted with Dr G, (Infact I just popped in no Appointment,)
He is so nice, he would give you all you want, I got him to write out some of my meds on private prescription, then I would take it to my Gp and see which ones I can get on NHS prescription.
I am getting the NHS pre payment certificate for prescriptions so you only pay £28 (for 3months) and get as many prescriptions as you want without extra charge, or you get 1yr, (£100) and no more charge for a year
( you can get the form from boots)

I took my cycle protocol with me , and showed Dr G, and we went over it and he showed me where he would add one or 2 things which was good.

I am back to greece for LIT2 on the 30th of June, then retest

Anyone been to Dr G recently!!


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## karen (Mar 23, 2002)

I popped in the other day as he asked me to give me dates asap so he could work out ahe  protocol and he charged me £90 for it! I was flabergasted and disproportionately upset. It made me question again whether to go ahead or not - the whole journey is so expensive and the expected I'm fine with its the unexpected which throws me.

The SA sec was back

Choice can you get any drugs on NHS? you are very lucky if you can, I've never managed to get anything from my pct!


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## Choice4 (Aug 14, 2008)

Thanks to Dr Gorgy
I got a prescription from him for clexane and I went to my Gp and told her I have a pre payment certificate for NHS prescriptions, and the gp gave me an NHS prescription for clexane, which is great!!!
( initially she wanted to know if he was a consultant and I showed her his name on the letter headed paper, and she was fine),
I guess it depends on the gp


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## Choice4 (Aug 14, 2008)

Karen
Sorry, for the charge you got,
If you don't want to be charged it is better to talk on the phone with him
But if you pop in and he has to write out anything for you then there would be a charge( i think thats fair, as it is a business)
All my other consultants charge whenever i go to see them, Dr Gorgy is fairly good!!

I paid £90 last time, but I had a list of all i wanted and I try to combine a lot of things in one visit,

My gp gave me the prescription she said the pct checks them every 3months to see how many prescriptions of the same thing they have given out to make sure they are not overprescribing, and that was it


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## Cath34 (Oct 14, 2008)

I was with Dr G on Tuesday for an endometrium biopsy for cd 57cells. He was marvelous fair play. I did my treatment plan also and he charged me £90 which I was also shocked at but hey ho it is business like choice said. I start the pill today day 2 (cilest) never done that before, I've always down reg on day 21 for 2 weeks and then stims!! 
When are you starting choice?


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## Choice4 (Aug 14, 2008)

Cath
My FET would be in August, but would start meds in July, still waiting for my June period,( not in site!!) since have estrogen and provera

I don't think we expect to go to Dr Gorgy's office without a charge, he is quite a good Dr who gives us most of his time, I know in must other clininc you don't even get to speak to the Dr, only the nurse or receptionist, and sometimes they give conflicting information.
Dr G is alway at the end of the phone for us, even when he was away on holiday, some girls were still texting him and he was replying so he is quite good with that
He does all the ivig and intralipids himself, must people use their nurses etc,
He is really helpful!!, I am sure if i am desperate in the middle of the night i can call him!!


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## sarahh (May 20, 2006)

Hi ladies! 

Cath / Choice - how come you are getting started on some drugs when you still have another LIT to go??    

Cath - he put me on Cilest before we had my LAD results back and we thought we were going ahead with a cycle straight away but then stopped it when we said we would go to Greece for LIT.  So why is he starting you now??  I would be very interested to know as it potentially means that I may be able to start a cycle sooner than I thought!    How come you needed the endometrial biopsy?  Don't the blood tests check for CD57?  

Oh and the dreaded £90 charge - I have been on the receiving end of that a fair few times now - I keep wanting to ask am I going to have to pay you £90 for this telephone call because shouldn't it be included in the sum that we are going to be paying you for the treatment - but I have chickened out every time so far!!!!!!!    Do they just charge it when they think they can get away with it?  Makes you wonder doesn't it.  I've never been charged like that before  

Have a good weekend ladies.  

Sarah x


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## suitcase of dreams (Oct 7, 2007)

Hmm, have to say I agree a little with Karen and Sarah on this one. I was charged £90 for less than 2 minutes talking to Dr G to confirm something....not very good value in my opinion

Lesson learnt on my part though - call rather than discuss face to face. And if you do have to discuss face to face, make sure you go with lots of questions not just for something quick and simple....

I've since discovered my eggs are old/poor quality so immune tx wouldn't have worked for me anyway....try not to think too much about all the wasted money on bloods, ivig etc  

Suitcase
x


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## Cath34 (Oct 14, 2008)

Hi girls, well firstly Sarah we discussed my 2nd lit and I said I wanted to cycle straight away after that really and so I had biopsy on day 28 and then my period came the day after which was good. (Bloods only checks cd 56 and mine was normal) cd 19 and 5 I think were very highand a few others. Anyway I wanted to as he said I could have them in uterus and if so need humira. AIf my cd 56 were high I would have had humira but they aren;t and I want to cover all bases!
He worked it out that I can start cilest o day 2 (today) for a month. In 3 weeks I have 2nd Lit. After I finish pill july 14th approx, then I have suprecur 0.2ml for a few days but not 2 weeks like previous clinic. Then start stimms July 22 after baseline that day. Think it may be a few days earlier as my period came earlier. EC collection is penciled in for Aug 3 week. My retest can be done locally Mon 13th July and sent overnight. Takes 2 weeks for result which gives a window incase I need a 3rd LIT but he said its only ever happened once!!!! 
Have I confused you with my messy explanation I am very conscious of time ticking away and want to start asap. How about you Sarah?


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## Choice4 (Aug 14, 2008)

Sarah
I have not started any drugs yet, i have the prescription,because i am cycling in USA, i wonted to see what i can get in the UK and the remaing from usa.

Do you gils think Dr Gorgy should start doing LIT !!!himself, he was thinking about it as he gets very fustrated when his girls find it difficult to get in touch with the greece dr or Dr Armstrong

( I think to avoid the £90 email him if it is a detailed question or speak to him)
But for giving the intralipids or ivig i don't think he charges extra


In the Usa intralipid is $600


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## Sprinkles (Nov 6, 2008)

Hi girlies,

Definately Choice, if Dr G did LIT then I'd explore the whole thing, as it is I know we cant afford to go over to Greece so havent even bothered with the test, if he did LIT and donor LIT at that he'd be on to a winner.

I've had the £90 charge too, once over the phone for my test results and then face to face to go through exactly the same thing and get a prescription, but thats my own fault should have planned it better.  Do you get fast responses from email?  Could someone PM me his mobile number please just then I've got it.

I have a really daft question, does clexane come in pre-filled syringes?  Am also hoping to get my prescription translated into an NHS one, think I'm alright with the steriods but GP wasnt sure about the clexane and if so am going to have to source drug and needles if thats the case.

Have been down regging for over a week now and just expecting AF then I can go for bloods and hopefully start HRT, always find this bit the worst, am shattered and no energy whatsoever.  Once start HRT can start the new immune drugs!! woo hoo.  Am also scheduled to go down for intrapilids once into HRT, Dr G recommended this before IVIG just in case embies dont thaw and then I havent wasted money.  

I've also enquired with central healthcare at home about having IVIG and the lady was lovely and it seems that the price is pretty similar to that of DrG and it includes the nurse coming and treating me at home, so I save on train fare.  She gave me a rough cost as I dont know an actual dosage at this moment, but could definately be an option once had ET.

Hope everyone has a lovely weekend xxx


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## suitcase of dreams (Oct 7, 2007)

Sprinkles - yes, clexane comes in pre filled syringes, you can get it at pretty much any chemist, I got mine in Boots I think...

Suitcase
x


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## Choice4 (Aug 14, 2008)

I think from now on anyone getting clexaine prescription from Dr gorgy should get a letter with it stating why it is necessary that we take it, with that armed, if you go to your gp for nhs prescription, then they should not refuse
( Infact maybe he should have a prepared letter he can print out and give to us about using clexaine)
If you are going for nhs prescription, try and get as many as you want on one prescription including folic acid, iron tablets etc, and get the PPC certificate that would last for 3months and you would only pay £28 for all the meds,


I think anyone visiting Dr G should mention about him doing LIt if he gets lots of pressure from us then he would do it, especially donor
( I don't know about UK laws on That!!)


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## Angels4Me (Apr 8, 2006)

Hi all

I was at Dr G's yesterday for my first intralipids, went ok, didnt notice anything at all. Im not taking humira as dr g prescribed for my TNF:a which is 30, having a second intralipid instead on tuesday but as we are ttc naturally is does make you question the cost, especially as we are running out of places to borrow from. Now thinking maybe we should have had ivf this month with the meds im currently taking, prednisolone, clexane and baby aspirin. Anyone know if the intralipids for this week and next will still have an effect on my body in July?

I should probably invest in a digital ovulation kit too.

Yes, the fee you pay went you visit dr G does keep adding up. Although I have only been charged one initial consultation fee when i have been to other clinics.

It will be a relief cost wise when all us ladies get a bfp....at least then we can spend on our little un

heres to wishing and good vibes for us all


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## Choice4 (Aug 14, 2008)

Intralipids Last in your system for 4wks

It is best to get the ovulation monitor  kit from boots £99, and the stick £20.You have to start TTC when the monitor shows ,3bars and the egg sign, and a day after as thats your optimal time
Even if you don't get pregnant this month you don't need to do any more immune treatment, you can try again the next month, as it the drugs are still in your system

I know a girl that had ivig and intralipids with Dr G, did not get pregnant the first month, then got pregnant the 2nd month with twins  naturally as the drugs were still in her system
Immedately she got a positive she went to Dr G and had another ivig


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## Angels4Me (Apr 8, 2006)

ok, thanks choice. Off to buy kit


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## karen (Mar 23, 2002)

Cath my protocol sounds exactly the same as yours. Cilest and then suprecur 0.2ml and then start stimms end July with a view to ec mid Aug. I'm assuming the suprecur is only pre stimms and we stop it during stimms - do you know? Thats what I paid £90 for him to tell me. I was just going to drop dates in but as he was free he asked me to come in and then gave me the bill. If I'd have known I would have run off and called him later! If I'd made an appt to see him, then I would have been less shocked to receive a bill. DH was shocked as even the argc offer free follow ups and tell you what to do for your next cycle.

Choice - it would be so good to get Clexane from nhs but as you say it does seem to vary depending on how sympathetic your GP is. A standard letter would help but it'd have to not mention fertility treatment in most cases!


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## Bibie (Jun 11, 2009)

Hi girls,
I'm new here, I'm from Belgium
Following many implantation failure, I would like to call Dr Gorgy. 
Could someone give me his phone number? 
Thanks a lot! happy to have found this group!
Debbie


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## annacameron (Dec 16, 2008)

44 207 224 1880. 
it comes up under" Gorgy" and "fertility" if you need it for future..


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## Pinpin (Nov 4, 2008)

Hi girls,

May I join you?  I have made an appointment to see Dr G on 4th of July so we can get some immune testing done and treatment for immune if required whilst we have our first IVF NHS cycle at Queen Mary Rohampton.  Our appt to schedule IVF is on 7th july so just in time.

Can someone tell me how before getting started on the IVF cycle you need to receive immune treatment if required (IVIG, Humira..)?

We started seeing Dr ******* about 1.5 month ago and he has precribed clomid until i'm ready to do the immune testing with him but i don;t want to go ahead with the immune treatment with him as having seen him 3 times now i don't think he very agressive in his approach for immune tx and he is very expensive but netherless a lovely man who knows what he is talking about. I am still hoping for a BFP this month as it our first on clomid but not getting my hopes too high as I am convinced immunes are the issue with us as I have an auto-immune condition called ulcerative colitis and totally adamant this is a sign i have 'other' immune issues in my body!

Good luck to everyone, I look forward to getting to know you all.

Pinpin xx


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## Sprinkles (Nov 6, 2008)

Evening ladies

Result! GP wrote prescription for the clexane and predisnolene (cant spell).  To be honest he said that he was surprised that my clinic hadnt recommended clexane and prescribed it as its very common in fertility tx.

Just waiting for AF then I can start taking HRT and feel a little more human after this down regging ~ complete brain mush at the minute.

Anyone know if if Dr G's stand in doctor will do intrapilids if he's away as he said he may be when I'm due to have my infusion.


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## Maarias (May 4, 2005)

Hi girls,
Seriously impressed by those of you who have managed to get nhs prescriptions for clexane and steroids. I have left my Lister prescription with the GP and still haven't heard back from them about it. Mind you my gp is soooo c...p!!! I went to see them last week to urgently fax a letter to my consultant for booking appt. and they still haven't done it!!! 

Yes, I agree Dr. G's £90 charge catches us by surprise as well! Although really appreciate is availability at the end of a phone etc. Can't really complain! Yes, wish he would do LIT!!! Would make life so much easier - getting an appt. with PA is a nightmare!!!

Mxx


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## Choice4 (Aug 14, 2008)

Sprinkle
Yes Dr G's partner would do intralipids when Dr G is away, also you can contact Dr G by phone or text while he is away


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## Maarias (May 4, 2005)

Hi sorry I missed that question. Yes. Dr. eskandar did my nhs prescription while dr. g was away.

Choice - how did you  manage to get mthfr test on nhs?!?! My gp is sooo rubbish, I am seriously considering changing. We moved two years ago and my old gp was fantastic! Feeling so frustrated by the whole system!


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## Choice4 (Aug 14, 2008)

I got my gp to write all the tests on a letter headed paper and i took it to St Thimas hospital ( big hospital with all facilities) and spoke to the manager and they looked in their special book to get the blood bottle and that was it


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## ♥JJ1♥ (Feb 11, 2006)

My GP offered to pay for my clexane and steroids (because they are not fertility drugs!!)- I still have my private drugs as have never got to ET since.
L x


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## Cath34 (Oct 14, 2008)

Karen, I am on cilest now day 4 and my GP prescribd it for me and clexane 60mg and pred and hopefully gestone but said she's not supposed to as its private healthcare!!! Anyway she wasn't happy with me having cilest as I am homozygous positive and am very prone to clotting and cilest makes it much worse. I rang Dr G and he said to continue asprin which I'm on anyway and take 20mg clexane tonight and ring him tomorrow first thing. I think he must have forgotten I am homozygous positive!!! We'll see tomorrow. 
Anyway I found a lump on my breast/armpit yesterday which I checked out today with GP ad she said that its the pill playing hell with my hormones, thank god as I was really scared.
Karen, I will be on suprecur for a week I think, not sure about during stimms!

Pinpin, As far as I know immune testing and treatmnt is not considered unless x2 ivf failures incase you dont need it. Thats what Dr G and Dt T in Greece told me.


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## Happy Mummy (Sep 22, 2006)

Hello girls,
I was just wondering , do you know if dr Corgy has a website? Found one for dr ******* , but not for him. 
Thanks,
Future Mummy


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## Maarias (May 4, 2005)

Here it is

http://www.fertility-academy.co.uk/

/links


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## sarahh (May 20, 2006)

Hi! 

Cath - I'm really annoyed as I didn't really think that I could start taking any drugs until LIT was finished and re test done.  Missed this month as Day 1 was Saturday so wouldn't be able to start now anyway otherwise would have been on exactly same time schedule as you!  Really want to get on with it!  Although do have DD to look after too so not sure I could cope with trip to Athens & taking all drugs at same time so maybe its best to wait!  

Choice - is there an optimum time after having LIT for having ET?  

Is anyone having any strange virus's on their computers after using FF by the way - I keep getting "trojan horse" messages on my laptop after using FF?  Can't think why though?!  Don't really get these computer viruses!!  

Regarding the £90 charge I don't really believe it is clear when we will be charged this.  I wonder whether anyone on here is interested in sending a joint email asking Dr G to outline when we will be charged this fee.  If it was £10 or £20 then fine but £90 is a lot of money for a quick question or 2.  I don't really think it is fair.    If anyone interested then PM me with your email address and your full name and I'll draft an email for you all to check and then we could send it?  

Right, really must go off to bed.  

Sarah xx


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## Choice4 (Aug 14, 2008)

Sarah
I have not got the virus on my computer

For LIT, i know if it is done in greece, it stays in your system for 9months if done by Dr Armstrong it stays in your system for 3month, because Dr Armstrong puts it in the vein directly, ( and some under the skin)


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## Cath34 (Oct 14, 2008)

Sarah I am on cycle day 6 today and day 5 of cilest but my GP wasnt happy abut the pill due to me being homozygous (clotting easily) so I rang DR G and he has now stopped me on the pill which I was gonna be on for a month. I am surprised he didn't check my notes before putting me on cilest as it increases clotting big time apparently. (according to my GP)
Anyway he said no worries just stop today and then start suprecur on 13th July 2 days early and Stimms from 22nd so why cant you do the same. He said the pill didn't really matter too much as I asked him will this make a difference to my cycle ad he said no.
Check again if you can start now as he said he can control your cycle to whatever you want. I'm doing repeat blods for LIT on 13th July, you could do the same. 2 weeks after our 2nd LIT. He said that was fine.
Hope this helps. Let me know. Cath x


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## karen (Mar 23, 2002)

I wonder why he puts us on the pill? I dont really understand that bit I admit and I've never askedd (and daren't in case he charges £90 for it!). He told me that if I need LIT then to do it during stimms. I wont be going to Greece but doing it through PA so its no problem to do it then.


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## sarahh (May 20, 2006)

Hi girls, well Dr G told me that he put me on the pill because it would "Quieten the ovaries" - so if any over active follies then usually means they get much smaller so no leading follies during stimms.  

Cath - I may email him and ask him what he thinks is best for me to do but thanks for your help.  Fancy meeting us in our hotel in Athens for lunch when you come over?  Its not cheap (its the Hilton!) but is really nice food - I know you said that you struggled to find anywhere when you were last over that had menu in english!  I guess you found something tho.  Don't feel obliged - just a thought! 

Sarah x


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## Choice4 (Aug 14, 2008)

A Lot of clinics in USA and some in uk,use the Pill, to help quieten the ovaries, and also to help regulate your period to make cycling easier and more predictable, as they can time things and know when your period would arrive.
I think the lister uses the pill a lot because they cycle in batches, so all the girls for a particular cycle are put on the pill, so there period would arrive about the same time!!


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## Cath34 (Oct 14, 2008)

I'm slightly worried though as he just told me to stop the pill but I'm not taking else in its place. What if this messes up my cycle?? I really dont want that but also I dont want a clot either. I would be day 21 on July 1st but I cant start Suprecur that day as we have to time treatment with the LAD retest on 13th so he wat me to start suprecur on the 13th? What concerns me is I could be cycle day 1/2 by then and can you have suprecur and it have an effect starting on cycle day 2?? I thought it had to be given before period? As I wont be on pill before hand I wont be surpressed at all will I? I'm confused.


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## Cath34 (Oct 14, 2008)

Sarah, meeting up for lunch could be a good idea. Is it at the top of the hill? It will really depend on timings really. We will be flying in same day again!!!! and home again as Andy couldn't get the time off work!! Did they tell you what time on 30th, I wasn't told and was going to go there by 3pm like last time? Maybe you could pm me your mobile and I can text or ring you over there to try and sort out a time. Cheers. It would be great to cycle together. Make sure you pester Dr G!!!!!!!


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## Angels4Me (Apr 8, 2006)

Hi all

Cath: I cant help you as I have no knowledge of this but im sure some of the girls here will put your mind at rest.

I have a question: Any of you taking prednisolone, what do you do when AF arrives, do you stop the pred for 7 days or do you wean off. I have been told to stop again if AF arrives (hope she wont). I know I have asked this previously but want to know what peeps do in general when on pred for more than 3 weeks. I was only off for a couple of days last AF as I weaned off, so not sure if this counts as a proper break. Do you wean off every AF or not? If so, which day do you start weaning off?

thanks for your comments
angels


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## super9 (Aug 5, 2008)

Cath 

I can't answer all your questions but I can't take the pill or nasal sprays due to an allergy , so I was given Suprecur to supress the ovaries and for DR. As far as I am aware suprecur can be given either 1 week before AF or on day 2 of cycle depending on what protocol mr G follows for you.


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## Cath34 (Oct 14, 2008)

Thanks super, I will be taking suprecur but I dont know if having it for 1 week before stimms is a short protocol as I've always done a long protocol in previous clinic!
Angels,I have taken prednisolone during ivf after ET and and was on 20mg but was told theres no need to wean off if your on them short term as you dont have a chance to react after stopping. I just stopped when AFarrived and I had a BFN. Hope this helps


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## Sprinkles (Nov 6, 2008)

Hi girlies

Quick question, whats the earliest anyone's had an appointment with DrG for intrapilids/IVIG need to work out when to go and book some trains.  I could get there for 8.30 but wondered whether that was worth it if cant get seen til 10 or 11.

Ta


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## Maarias (May 4, 2005)

Sprinkles,
I had a scan at 9.30 once and ivig straight after so would have been around 10am. Unless you are going in specifically for ivig and no other consultation I would have thought the earliest he would do it would be 9.30-10am.
Mx


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## gbnut (Aug 4, 2006)

He used to see me at 8 am sometimes earlier for an early appointment and scans.  He was very flexable.  I was also frequently seen at weekends as well if my protocol required it.

Susan x


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## Cozy (Jul 17, 2008)

Hello Ladies,

I hope you dont mind me barging in on your thread, but I have made and appt to see Mr Gorgy and I could do with some advice.

I had my immunological tests done at ARGC in July 2006, which showed slightly raised NK cells, and since then I have never had a BFP. I am currently on a 2ww after have donor eggs. I have tested and its BFN, but my OTD is 22/6 - though the result wont have changed by then I know. I have been in steriods (Dexamethasone or Prednisolone) on each cycle as well as Clexane and asprin.

Anyway, I am having my tests redone before I do another DE cycle and was wondering how effective and expensive it was to have IVig or Intralipids or whatever else he gives you. Does he seem to give this routinely?

Have people had positive results from his treatment?

Do you think it has been money well spent?

We are up to £30k spent so far, I know some have spent more, but we cant afford to keep spending and I feel my next cycle will be my last, unless we win the lottery. So I would like to give it my best shot, but without spending a fortune.

is he fair and honest with his tx? 

Sorry for the 20 questions  

Cozy


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## Cath34 (Oct 14, 2008)

Hi Cozy,

I am doing my 1st cycle with him and have had loads of tests done. I have very high NK cells and need IVIG X2 and I am optnig for Intralipids x1 also (my choice) Steroids, asprin, clex and gestone seems to be norm with this kind of prob but he doesnt push anything on you. He simply tells you what you need but if you want to keep the cost down he will change things aroud for you. 
Have you had DQ Alpha and LAD TEST done, well worth trying it I say. My DH and I have a match and so I needed donor LIT. Thats another story and there's another thread for that if you want to know more.
Dr G is lovely although I am not aware of his successes really, only what he's told me in passing. Hope this helps a little. Good Luck. x


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## super9 (Aug 5, 2008)

Hi Cozy

Mr G's success rates are not directly available because he uses other clinics for his EC and ET so his success rates go under the clinics he uses. Bur I remember asking him before I became his patient  about  his success rates  and they were quite good and similar to the ARGC, though not the same. Also his receptionist has mentioned on a few occasions now, how he has had 5-7 women pregnant in  a few weeks and how busy they have become with 80 new patients registered from Xmas to Feb 09. So although I can't give you exact figures for his success rates- I hope some of this is reassuring.


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## Angels4Me (Apr 8, 2006)

I have seen a couple of pg women in dr g's office. when i went for my intralipids there were 2 other ladies and we were all having pre-conception tx. I am ttc naturally this month and july with intralipids, clexane, prednisolone and baby aspirin.  Its an expensive journey with no guarantees, i know its a hard one to weigh up when funds are so low. we couldnt affort ifv with immune tx

good luck
angels


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## karen (Mar 23, 2002)

Hi all,

Just got my LAD results something was 13.5 and something else 35 so apparnetly its borderline but I need it. I'm not going to Greece so we didnt have DQ alpha done but we're going to Paul Armstrong - has anyone used him? Dr G says he will call him for me and find out if he is around during my stimms. I hope he doesnt forget!

Karen


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## Sprinkles (Nov 6, 2008)

Hi Cozy ~ sorry for your BFN, this is my first time with Dr Gorgy and co-ordinating his recommends with my clinic in Manchester and have found him very fair and helpful so far.  Good luck for your next tx.

Karen ~ can I ask why you had the LAD without the DQ alpha?  Didn’t know you could do that and go for LIT in London without DQ alpha?

I collected my clexane and predisnolone today from Boots, goodness those needles are big!!  Also have read the leaflet on predisnolone and the side effects sound horrendous, have warned DH to keep me away from dangerous items.  Anyone had the mania or depression reaction?  Sorry to be such a worrier but hate those leaflets they fill me with dread.

Oh have booked to go for first intrapilids next Thursday as well, managed to get in for 9am, thanks everyone for their advice.  Booked train for 5am hopefully will be able to have a sleep going down.


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## Choice4 (Aug 14, 2008)

Karen
I have used De Armstrong for LIT, it is £850, he may want to know your DQ match before you can use DH blood, but from what i gather from you post, you don't have a match or is you did not do DQ test

You can call the sec directly and get all the info and answers to your questions you need, you and DH need to do some tests and the LIT has to be done within 30days of doing the test, if not you would need to repeat the test

Here are some of the tests, you can also check out the LIT thread for more info

LIT BLOOD TESTS





Female patient - Blood Group
Rubella
Toxoplasma




Male Patient bloods must be performed within 30 days of Immunisation Therapy Treatment

Male patient -	Blood Group
HIV
Hepatitis C
Hepatitis B Surface Antigen
Hepatitis B Core Antibody
HTLV 1 and 2
Syphilis


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## karen (Mar 23, 2002)

Thanks - Dr g said that the only reason to do DQ alpha was to make the decision to go to greece or not and as I refused to go to Greece he said there was no point doing the DQ alpha which made perfect sense to me which is why I didn't do it! I didnt want it done when I had the LAD test done as if my results were fine I wouldnt need it done anyway. As I understand it, my results were borderline but Dr G recommends Lit and didnt say I'd need to do DQ alpha if I was going to PA.

Wow PA needs alot of tests! I'll speak with Dr G in a couple of weeks and see if he has made contact with PA and if not I'll call mayself!


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## BubbleMac (Apr 15, 2009)

Hello, ladies - newbie to this thread.  Choice4 suggested I join in to add my voice to those of us who are Dr G patients (I am mid my first 2ww with him  ) who have had a tough time with getting access to the v limited (UK/Greece) LIT options and would love to see greater choice - even if Dr G is the one whose clinic offers it.

BTW, I've met a few ladies at his clinic who are pg (hope it's all going v well for each of you).

All the best,

BM x


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## Cozy (Jul 17, 2008)

Bubblemac,

good luck on your 2ww, I hope your treatment with Dr G has helped and you get a BFP.

I go to see him in a couple of weeks to see if he can help me too. I dont understand all these tests and treatments but I'm sure I'll get my head round it eventually  

Cozy


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## Choice4 (Aug 14, 2008)

Bubble
Welcome here,
Yes i think we should all push for Dr G, to start doing LIT himself to save a lot of people the stress!!


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## Angels4Me (Apr 8, 2006)

Hi all

Good luck Bubblemac    Im with Dr G and also on 2ww, ttc naturally. Had intralipids, taking pred, clexane and aspirin for second cycle now   wishing for a miracle too

angels


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## Cath34 (Oct 14, 2008)

Good luck Bubblemac and Angels on your 2ww. I hope you both get a bfp, let us know. Hopefully the bfp's will keep rolling  

I agree that Dr G should start to do LIT as there are so many of us going over there, it just seems obvious for him to do it and probably a good business move! Choice, do you think he is tempted?


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## Choice4 (Aug 14, 2008)

Oh yes!!
Dr Gorgy is more than tempted about doing LIT, but he doesnot want to step on the feet of those doing it now!!
(he gets very fustrated when his girls cannot get hold of greece or armstrong for LIT)

But he has to check the UK laws, on LIT ,donors etc.

Since he started doing intralipids he has been a hot cake, so with LIt, he would even be a hotter Cup Cake!!!!


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## Choice4 (Aug 14, 2008)

I saw this immune success story from another site, it may help a lot of people who want to add or remove something from their cycle o make things better

http://health.groups.yahoo.com/group/immunologysupport/message/94696

/links

Removed content due to copyright


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## annacameron (Dec 16, 2008)

Choice, thanks very much, that's very useful. 

what does she mean by taking a supplement called "BA" - it's obviosuly something  very basic and I am not thinking straight...


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## Choice4 (Aug 14, 2008)

BA is baby Asprin!!


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## annacameron (Dec 16, 2008)

ha!  of course!!! thanks


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## Angels4Me (Apr 8, 2006)

Thanks Choice...thats a wicked thread eh

ANyone know if its ok to take this amont of fish oils- 3400 mg daily...along with clexane, prednisolone and baby aspirin?

Also, anyone know where I can get Curcumin ?  I wonder if this is safe with above meds?!

thanx
angels


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## Choice4 (Aug 14, 2008)

Curcumin try health food stores, like wholefoods or search online,


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## super9 (Aug 5, 2008)

Most Indian grocery shops sell curcumin which we call turmeric. In ayurvedic medicine we use turmeric for inflammatory diseases such as arthritis and many other diseases as well, as turmeric/ curcumin has many beneficial properties.

To absorb the powder it is good to take it with a little olive oil and black pepper or take the turmeric tincture as on its own turmeric is not easily absorbed by the intestines.


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## Cath34 (Oct 14, 2008)

So is it the same thing to use dried tumeric (used for cooking)? Do I sound really stupid now?


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## Choice4 (Aug 14, 2008)

I got the curcumin for food from ASDA, so i am putting t in my food, i have not checked for the tablet form yet!!


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## Maarias (May 4, 2005)

sarah i stopped the fish oils once on clex and ba


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## Cath34 (Oct 14, 2008)

why did you stop the fish oils?


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## ♥ Mighty Mini ♥ (Apr 10, 2008)

Hello all! Just gatecrashing!!  

I've just M/C at 6 + 2 weeks (last week) I have had 2 chem pgs with  DHs sperm and this one was with donor sperm due to DH having chromsomal problem from karyotype test we did after the 2nd chem pg. On the last cycle my beta was 90 then went to 166 on day 16PO then on 20po it was 398 which was rubbish!!   I knew from that point that i would M/c. anyway i am now going to ring Dr Gorgy and get immune testing done. We haven't decided which clinic we will use as we have 1 more go on NHS left. I don't think my clinic wil apprrove of the imune testing and tx but its tough!!    

also my egg quantity is lower each time i have EC. on our third tx we did IVF as opposed to ICSi with Donor sperm and got 0 fertilisation   Our con said it could be a egg issue ( i got 7 eggs)  and warned us that eggs may be giving up the ghost, this time i got 5 eggs and 3 fert and 2 embies with ICSI.  so not sure what my AMH/FSH is, and not sure i want to know!! I suppose Dr Gorgy will advise us on this. I will use donor eggs if need be. 

I haven't a clue what IVIG is and LIT! and what is this going to Greece business all about?? sorry to be thick!!


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## Cath34 (Oct 14, 2008)

Welcome Mini upsy, I'm sorry to hear of your recent miscarriage, it must be awful for you. I think if you have some immune testing done with Dr G it could change things drastically for you.
I have done 4 cycles and not 1 bfn and have now moved to Dr G for immune tests. The tests are Natural Killer Assay (NK) It involves testing your blood for NK cells and then treating it with IVIG (iv drugs) to reduce the levels. The tests are sent to Chicago by the way hence the 2 week wait. If you have  high NK levels (Dr G will tell you if you have) you can have the IVIG to reduce them before starting a cycle of IVF. It is v expensice £1250 a go but you can have Intralipids instead  but he will discuss this with you. If you have high TNF's you would prob need Humira. It will all be double dutch to u until you start the journey.
Other tests and which I think would be imperative for you are the DQ alpha and LAD test, v v important. Basically DQ ALpha involves both your and DH blood and test to see if you share a gene. Also LAD checks your antibody levels to see if you are producing enough blocking antibodies to protest the embryo, if you have a neg LAD then you need the LIT treatment. If you and DH share a gene then you will need Donor LIT in Greece!!!! Its only licensed there and Cyprus!!!! Its the Dr Beer protocol which is v v good. U need to get his book is your body Baby Friendly, v v v v good book on immune issues. If however you and DH dont share a gene you can have his blood injected into you instead of doner with Paul Armstrong in London. In a nutshell thats about it!!!! Hope I haven't confused to too much. xx


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## ♥ Mighty Mini ♥ (Apr 10, 2008)

thanks for that, no you haven't confused me but we are using Donor sperm so what so we do with the alpha Q thingy??!!


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## Cath34 (Oct 14, 2008)

Well I would think that if he tested you LAD for your antibodies and if they were neg (ie low levels) he would recommend Donor Lit which is what I'm having at the moment. He had a debate with one of the authors Jane Reed who wrote co-wrote that book bout the purpose of doing LAD test on evryone as previously he has only been doing it on miscarriage cases. But he seems to do it as part of the whole immune thing now as there seems to be alot in it. Jane Reed convinced him to I think.
I wouls day its well worth a visit to him. Where do you live? I'm travelling from Wales which is a fair journey but well worth it, especially as there's no waiting list to see him, its immediate. 
I had a DQ A match with DH and a low positive LAD so he advised Donor Lit in Greece. I am going for my 2nd jab Tues, we are going there and back in a day!!!!  The protocol in Greece is v different from P Amstrong also, Grecce do x2 LIT a month apart under the skin and then retest your LAD 2-4 weeks after to check levels. PA just does DH LIT  x1 a few days before EC and there's no tie to retest to see if its worked, especially that quickly, but they both believe different things unfortunately.
I'm sure Choice will be along soon to give you a more detailed explanation as she is a pro at all this!


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## Choice4 (Aug 14, 2008)

Mini
I am sorry about everything, but I am happy you have decided to see Dr Gorgy, is is very nice and gives you a one to one, you can phone him, email him or even walk into his office without appointment and he would see you.
If you find him ok, you may decide to cycle with him, he does his ET at LWC, not far from his clinic, but most of the other treatment are done in his office
I think Cath has answered most of your questions,
What I can say is that LIT is very important to be positive before cycling
-Immune tests are quite expensive, so budget between £1500-£1800, but it may be your answer

In answer to your question about using donor , if you still need LIt,
yes both with donor sperm or donor egg if your LAD is low, you need LIT
see the same question answerd by OMNI, in the level 2 immune thread

Re: level 2 immune advice needed 
« Reply #5 on: 22/06/09, 17:30 »

--------------------------------------------------------------------------------
If I;m understanding what the DQ alpha test is, I don't think we need it because we are using donor embryos.

What is the LAD test though?

-----------------------------------------------------------------------------

Re: level 2 immune advice needed 
« Reply #6 on: 22/06/09, 17:42 »

--------------------------------------------------------------------------------
No, you still need to test for DQ Alpha / LAD even if using donor because it is your immune system failing to produce the appropriate "blocking antibodies" in respect of the embryo. Without these antibodies being switched on, the embryo is seen as a foreigner to be attacked. If you have a similar DQ Alpha numbers to your DH this might be the cause. But you can also have low "blocking antibodies" (i.e., a low LAD) because of previous infections. I believe mine might have been caused by adult-onset chicken pox (this is mentioned at p.10 of DR Beer's book "Is your body baby friendly" which you can order off amazon).

Omni

http://www.fertilityfriends.co.uk/forum/index.php?topic=198160.0


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## Choice4 (Aug 14, 2008)

Hi girls
I heard Dr Gorgy, is now able to test how Intralipids and iVIG can suppress your NK cells so as to know which one would work best for you.
This test was only available before to test IVIG suppression, but now they can test Intralipids suppression which is wonderful

Dr Gorgy is becoming the immune Guru!!!

NB: I heard Dr G is away Mon to wed and also the week starting july 13th
I think he also runs a clinic in Egypt!!


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## ♥ Mighty Mini ♥ (Apr 10, 2008)

choice - You got me here in the end!!!   I read those posts from omni. Just told DH we may need to go to greece for the day!!!!     He wasn't impressed!  

I wasn't going to get that book as i know it would freak me out but i think i will now. Just before i tested I got a sore throat, i only remembered tonight when reading through the post so now i'm thinking is this my body fighting off the embryo?  

I had a skin infection a few yrs ago which gave me reactive arthritis, not sure if this has caused any damage?

I have had level 1s done by my GP, i think they forgot to do the lupus one, and not sure on the factor v thingy?  

I think i will get them to refer me to m/c clinic and see what tests i can get then ring Dr G


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## Choice4 (Aug 14, 2008)

Mini
Yes you can get refered to M/C clinic but please don't let them waste your time, I am not sure they would be aggressive with immune testing and treatment, and I think Dr Gorgy would only do the level 2 tests for you anyway.
I went to greece on my own and again tomorrow as I am doing donor LIt

The Beer book would not make you freak out, but you would undertand it better when you have done the tests and have the results interpreted,

Take your time to think over things before going to gorgy, may be you need a bit of time to heal and get yourself together before any further tests and tretaments


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## karen (Mar 23, 2002)

Girls has anyone ever got a prescription for stimming drugs from Dr g? What does he charge for merional and fostimon now?

Thanks

Karen


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## Maarias (May 4, 2005)

Choice,
Is Dr. G def back on Wednesday? I need to ask him what to do about LIT on Friday re. stopping steroids...
Thanks,
Mx


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## Sprinkles (Nov 6, 2008)

Hi girlies

He told me last time I was down that he was back on 1st July but when I booked appointment for intrapilids Clarissa told me he was back on Thursday, 2nd.

Wondered if anyone could help please, am a newbie to the clexane injections and finding it really hard to do them without bruising myself quite badly.  Do the clexane in the morning and the buserelin at night and have no issues at all with the buserelin no bruises at all.  Am thinking its because I'm following the leaflet and in it it says pinch the skin together whilst you put the needle in and keep it pinched until you've finished the injection.  I dont do this with buserelin and dont get any bruises.  I know its ridiculous but could I be pinching too hard?  I currently have 4 2 pence sized bruises that are very very purple on my stomach and they're quite sore.  Am I doing it right?


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## suitcase of dreams (Oct 7, 2007)

sprinkles, I found the clexane bruised a bit less if warmed up before use - pop it under your arm for a few minutes before injecting
I used to pinch a bit, inject at 45 degrees and then let go immediately
did get some brusing, but not too bad
good luck,
Suitcase
x


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## super9 (Aug 5, 2008)

Dr G charges £30 approx for the merional and £25 for the fostimon per 75iu vial. It's way cheaper to get it from Fazeley pharmacy.

Dr G is back on Thursday (1st July) from Amsterdam but Dr Eskander is there up to Wednesday


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## Angels4Me (Apr 8, 2006)

Hi Sprinkles

The clexane injections do bruise sometimes, im sure it says that on the instructions. The needle is not that fine. I pinch and put mine in on a slant and sit there for a while willing the needle in...i cant just push it hard....i have a 50p size bruish each side of my tummy at the moment, mostly get tiny ones tho...dont think u will avoid altogether with this drug as far im aware


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## Maarias (May 4, 2005)

Clexane does caus bruisng, I have occasionally had some quite big ones.
It's best not to rub the site after injecting.


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## super9 (Aug 5, 2008)

Hi 

Can anyone tell me if Dr G normally prescribes 20mg clexane as part of his protocol even if you don't have any clotting issues? and does he prescribe this from day 6/7 of stimms. I've been reading the clexane thread and it seems many ladies start from EC so I'm a little puzzled as to why he would mention starting it from day 6/7 of stimms.

Is it best to take it morning or evening or can it be taken at anytime?


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## Maarias (May 4, 2005)

I'm on 40mg


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## Sprinkles (Nov 6, 2008)

Thanks for the advice girlies, think I pulled off my first bruise free clexane this morning... woo hoo.

I'm on 40mg clexane too, and Dr G said to take it in the morning and started them 5 days into HRT after down regging, but I'm having a frozen cycle not fresh so no stimming for me.


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## Choice4 (Aug 14, 2008)

Hi
Girls, it has been busy here
I got back from greece last night, after my 2nd LIT
I think Dr G went for the Europen Conference of fertility Drs in Amsterdam, ( hopefully, he may come back with great ideas), starts back on thursday

Super 9, for Clexaine he would usually give 40g ( i have no clotting factor)
You can also warm the clexaine under your bra!!, before injecting, but it bruises, becaue, it basically stops the blood to clot


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## super9 (Aug 5, 2008)

Thanks for the info choice

I will check with Dr G why he recommended 20mg of clexane before EC for me and 40mg after EC.


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## annacameron (Dec 16, 2008)

Super - it's because you are having an op - he doesnt want you to bleed a lot!


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## Sprinkles (Nov 6, 2008)

Welcome back Choice, hope the LIT has done the job.

Had my first intrapilids today and everything went well apart from the fact I'm now completely knackered.  Off to bed for me.

Hope everyone is well x


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## Cath34 (Oct 14, 2008)

Well I have just had the results of my biopsy for NK 57 cells and it is negative, so no need for Humira which I am pleased about.


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## Cath34 (Oct 14, 2008)

When I rang for my result is neg or pos I also told him that Dr Tsgaris wanted me to wait another week before retesting my LAD incase of low levels and I wanted to check with Dr G that he still wanted to see me on 22nd due to tsting a week later. Anyway I was 5 mins max on the phone and he was going to pass me back to secretary to (I'm almost certain) charge me £90!!!!! I jumped in and said thankyou goodbye and he said wait one moment, paused and as I was going anyway he thought better of it I think. I really dont agree with this. Does it mean that every question or point that needs checking with him constitutes a charge??!! He definitely needs a nurse/sister working for him to give this type of information out and to clarify points during treatment for his patients. Choice I think you need to do your thing!!!!!


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## Maarias (May 4, 2005)

Cath,
I'm sure he wouldn't have charged you - I've never been charged for a telephone conversation. Maybe he thought you wanted to arrange another appointment? I must admit I've never had an issue re. telephone conversations, and I've had a few! I don't mind being charged for face-to-face consultations - that's just bog standard.
Mx


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## Choice4 (Aug 14, 2008)

Cath
I am happy your biopsy result came back negative.
I would see Dr G, next thur, and I would raise the concern about the £90 charge, I hope this matter can be resolved soon!!

Sprinkles and Maarias hope all is moving on fine


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## sarahh (May 20, 2006)

Choice - yes please, do your thing quickly - I need to speak to Dr G next week and I'm sure he's going to charge me again as I have a few questions   

Cath, I'm sure you are right, thats what he did to me last time - fair play to you on managing to stem that one off!    

V. late, must go to bed, catch up soon.  

Sarah x


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## omni (Dec 4, 2006)

Choice,

Also I think a quick consultation e.g., 5-10 minutes to get repeat prescription/blood test form or before IVIg and Intralipids should not cost a full £90 on top of the costs for the IVIg/Intra/blood test.

Sometime I've been charged / other times not. 

Omni


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## Cath34 (Oct 14, 2008)

Go Choice, I think it will be well worth a mention. Maarias, some of us have been charged for telephone conversations which is why we are not happy. I think it should be set in stone what is charged for and what is not! Anyway I'm just pleased my results are neg. The question now is whether to start my stimms before my LAD result comes back as if I wait for the result and need another LIT my cycle will run on another month or so again, or do I still cycle ( like Mr T said) and then if I need an extra LIt to do it after ET? Dilema!!!!!


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## super9 (Aug 5, 2008)

Hi

I did bring the issue of being charged £90 for 5 minute conversations up with Mr G a few months ago and since then he has stopped charging me the £90 providing I am having a test or intralipids/IVIG.  Also since explaining to him I can't afford his higher prices for intralipids or some of his blood tests in the credit crunch, he has never charged me for any telephone conversation. So perhaps it's better to reiterate you can't afford his fees and he may renegotiate with you.

Can anyone of you who have had EC with Mr G tell me how long the process takes and how it went and whether you wee just given sedation or a GA.

Thanks


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## Choice4 (Aug 14, 2008)

Ok
Omni I would mention about that too, I hope to come back and post a reply after thursday.

Cath I think you should go ahead with your stimulation and test at 4wk, because the LIT is fresh in your system, and hopefully it may have maximum effect, you can always do a top up/ booster LIT if it is low.
Take advantage of you Endo NK being negative and all other drugs in your system.

The other idea is that Dr Beer would wait until LIT level is high before giving the green light to TTC.

Think about it and follow your mind


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## sarahh (May 20, 2006)

Cath - I think you should wait a month for your results so you can cycle with me!!!!!!!!!!!!!!!   

He he, only joking, if you feel that you would be prepared to fly to Athens if you were newly pregnant then go for it but I just know that I would not feel comfortable doing that and if I did need a booster but wouldn't fly (although I know it is safe) and something happened I would always think, why didn't I just wait a month IYSWIM.    Go with your gut instinct. I am probably only so cautious as I've been about to start my cycle about 3 times now and then something else has cropped up meaning I have to stop!! 

Hope your arm is better now (although in some ways hope its still painful as that means a good reaction - but obviously not wishing you to be in pain!!!!!).  

Sarah x


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## Angels4Me (Apr 8, 2006)

Hi all

I'm 44 this month so have decided to take dhea for four months then have ivf....only one thing im hesitant about is taking the dhea with prednisolone....anyone taken together?? Dr G said ok to do, FF nurse said dhea may exagerate effects of prednisolone....anyone else taken these together?

thanks for comments
angels


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## super9 (Aug 5, 2008)

Hi Ladies

I did post yesterday re EC with Mr G as I need to make a decision as to whether I have all my tx with Mr G or just my immune tx , but I don't have any info on his EC Procedure, and I haven't been to the LWC where he carries out EC and ET. 

I would be very grateful if those of you who have had your IVF with Mr G  can you share how it went. Does he give you the choice of sedation as well as a GA and if so under sedation- are you under a lot of pain? I understand he does his EC and ET at LWC- are they like a hospital setting with backup procedures if something was to go wrong or just a clinic.

Thank you for helping


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## karen (Mar 23, 2002)

Super, EC with Mr G is under heavy sedation. Apparently I came back talking rubbish but I dont remember any of it and had no pain nor was aware of any of it at all. The nurses and staff at LWC are absolutely wonderful and very helpful and friendly. The facilities are fab. I have had ec at Hammersmith (which was fine) and ARGC and LWC is far superior in facilities to ARGC. In comparision I actually "enjoyed" the experience. I hope that is of some help?

When I did my first cycle with Dr G (march 09) he didnt' charge for anything other than the first consult. I spoke to him on the phone but didnt visit outside the ivf appts. Having been at the argc for many years, where they dont charge either for speaking to someone (usually a nurse but a dr if you request it) nor for the follow up appt, I find it very strange to be charged. I'm assuming he doesn't charge now once you start treatment. I need to book a scan and blood to see if I'm ready for stimms and hopefully get a prescription from him but I am wary about calling and getting him on the phone in case he charges me! and personnally I dont find his secretary v friendly or helpful. I agree it would be great if he got someone eg nurse we could call for basic questions and requests without incurring a charge!

x


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## super9 (Aug 5, 2008)

Thanks Karen- I really appreciate the information.

Yes I agree Mr G needs to get a nurse as this would avoid having to spk to him for some queries.


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## Angels4Me (Apr 8, 2006)

i've never been charged so much either. im gonna ask to make it clear so i know when i have to pay as it will make a difference if i can have tx or not


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## Maarias (May 4, 2005)

I think he used to have a nurse but she wasn't busy enough so left.

I hear what you're all sayin about being charged, but havin been at ARGC, I must admit I find the level of care with Dr. G much much better - you get to speak to a doctor everytime which I prefer to speaking to a nurse. I think it needs clarification when a charge is likely to be incurred, as I say, I've rarely been charged for a query on the phone...I really like his accessibility, he even texted me back today with a query I had.

Mx


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## PeeBum (Dec 18, 2008)

Hello - I'm new to this thread but have been seeing Dr G for the past few months investigating immune issues. I am on humira for raised TNF-alpha and have also had LIT treatment in Greece. I also have raised CD3 NK but the other ones are ok and tested positive for Thyroid antibodies.

Dr G is also prescribing intralipids, aspirin, clexane and prednisolone. I was just wondering if anyone had any experience they could share of being on prednisolone ... from what I have read it is prescribed mainly for people who test +ve for ANAs (which I don't). He is putting me on 25mg and I am a bit worried about nasty side effects and blowing up like a balloon ! Has anyone been on this and had any side effects 

Thanks
PeeBum
x


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## Angels4Me (Apr 8, 2006)

Hi

Im on prednisolone, clexane and baby aspirin (now dhea too). The pred has made me put on weight, even when watching what i eat. Apparently you need to eat less salt. The longer im on it, i can see my weight gradually going up. But as its relatively short term i will concentrate on losing afterwards.

Are you taking dhea?

angels


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## Cath34 (Oct 14, 2008)

I agree, I have been on pred before and each time I have blown up like a balloon, especially in my face!! I hate it as I look like a moon!! It does go back down but not for good while afterwards. As long as they fight off the NK's then thats the main thing.


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## Angels4Me (Apr 8, 2006)

Do you know what, my kidney's havnt felt right after taking first dhea yesterday. im wondering whether worth coming of the pred for 3 months .....might need a chat with dr G.


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## Angels4Me (Apr 8, 2006)

Someone on poor responders thread told me

"I think nearly everyone here takes dhea before ttc and comes off it before starting steroids with tx"

Anyone here familiar with this....as im not sure about taking prednisolone with dhea

Anyone any thoughts on this?

angels


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## Maarias (May 4, 2005)

FYI, in case anyone needs to know: Dr. G is away next week.


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## omni (Dec 4, 2006)

I agree with Maarias,

I do like Dr Gorgy's accessibility. Unfortunately, the office gets busier everyday - so I don't know how much longer this can last. But he is a very nice man answering phone calls personally and giving out his mobile number. He did not charge me for our brief chat prior to intralipids today. I think it just needs be clarified when a consultation fee is applicable as the cost of meds is so horrendously expensive in itself - we have to budget what else we can. 

I must say that although I have put on weight with pred (25mg) pre ET, the 3 times I have become pregnant when using it, I have rapidly lost weight to the tune of half a stone within a few days of transfer. I have heard others on pred who have experienced this.  I understand losing weight can also be a side effect. So you'll just have to make sure you get a BFPs. Certainly, any weight gain is a small price to pay for the extra protection it provides against NK cell activity.

Omni


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## Sprinkles (Nov 6, 2008)

Pants just did a post and lost it all.... lets try again.

Anyway interesting conversation about weight gain and pred, to be honest I was beginning to wonder how I'd put on so much weight whilst only eating salad and drinking water and now I know.....  dont laugh but I thought it was the fish oil tablets.  Omni you said that you lost weight after ET was that whilst you were still on the pred?  My face has blown up too Cath, my cheeks are like chipmunks!

Also interesting on the charges as well, never like to ask I'm such a wuss and he's such a lovely man.

Had my lining scan today and am good to go with ET on Friday as long as the embies thaw ok, will be grateful just for one.  Also have booked healthcare at home to come do my intralipids after ET and it was quite easy to do, thanks Choice for the information.  It works out reasonable as well.  About the same as going to London and the trainfare, and I dont have to get stressed with the journey down and back so thats a bonus.

Hope everyone is ok x


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## annacameron (Dec 16, 2008)

Pred is a steroid so you generally put ON weight with it. Few people lose weight on steroids unless, for example, it makes you feel sick so you don't eat or something. 

btw, if you get a bfp, you need to maintain the Pred till week 12 which is scary - think carefully before going on it. I didn't realise personally. 
and of course then taper down off it....


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## Cath34 (Oct 14, 2008)

Funny you should say that, (I'm going to sound strange now) but when I took pred 1st time, I lost weight but bloated up instead and had a huge face!!!! I was off my food due to nausea thats why I think. I'm feeling pretty rough today, not sure if LIT has anything to do with it? Although I have no swelling or itchiness, I'm starting to wonder if this is normal!!! God help how I'll feel when I start the full concoction of drugs!! 
By the way where is evryone getting their stimulation drugs from? I think I will be on Menopur again. Does Dr G just right you a prescription and its up to us to search or are you girls buying it from him??


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## Choice4 (Aug 14, 2008)

Hi Girls
I am happy that those who saw Dr G briefly today or spoke to him were not charged .
I sent him an email about it last night, and told him we would discuss further on thursday, so thats good news,I would ask him for better clarification before a charge, etc. It is good we can express ourselves here and can get to speak to him directly and he can make changes!!!( unlike other clinics)

If he is getting very busy, I wonder if it is time to get a nurse!!

Cath I am not sure if Dr G supplies the drugs, but you can ask him

Sprinkle I am happy your lining is doing well and you are ready to go.
Good Luck for your ET, on Friday and I pray "This would be it" for you.


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## Angels4Me (Apr 8, 2006)

Hi all

I assume some of you here will have tried dhea....Im considering this before ivf as im 44 this month  

Can you let me know of your experiences with dhea?

Also, is it ok to take with prednisolone?  I read here, maybe not.

And, which days of cycle do i need to stop dhea to make sure i dont damage eggs?

thank you so much for comments

angels


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## superted (Sep 21, 2004)

Hi Girls

Choice I think it will be interested to find out about his charges.

I have to say after my initial consult I did call and email him a lot and got a lot of info from him but that was prior to my treatment and to double check what I was told in my original consult as to when and how much to take of something.  So it was a bit of a firesafe as such.

However since I have my bfp I am seeing him for the immune side of things I have had 3 meetings and have been charged the £90 consult and that is when I have had ivig/intralipids each time and one also with a scan.  Have to say just to tell him I am here for a 6 week scan and then to have intralipds I feel does not warrant a £90 consult fee.  What do you think?  However if you are there for him to give advice about immunes or drugs or something I think then the £90 fee is worth it.  Seeing as I am just seeing him for the result of a bloodwork and then whether or not I need further ivig/intralipds I dont feel that I should be paying an extra £90 after all the ivig alone is expensive.

Be interesting to see what the clarification is.

Have to say each time he writes in my notes where I have paid the £90 fee he is just duplicating previous notes as I have not had to change my medication at all.  Now if he advised I should change drugs or something then fair enough I can kind of accept the £90 sting.

Hope all is ok.

superted x


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## Cath34 (Oct 14, 2008)

superted, I totally agree with you. Having IVIG/iNTRALIPIDS or a scan etc.. is an appointment and whatever needs clarifying during that time should be in the price. Its different if you go there just to discuss something, and I understand we pay for his time. But now is the time for a nurse definitely. I'm sure Choice will get it sorted


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## Choice4 (Aug 14, 2008)

Angel4me
I have noticed you have been asking this question on DHEA without much response
You may want to sign up to the sites below and ask the girls there about DHEA, I hope that would help

In CCRM in america, when they use DHEA the also use saizen ( growth hormone)

http://www.ivfconnections.net/board/showthread.php?t=122527

http://www.ivfconnections.net/board/showthread.php?t=122501

http://www.bubhub.com.au/community/forums/showthread.php?t=161352



Angels4Me said:


> Hi all
> 
> I assume some of you here will have tried dhea....Im considering this before ivf as im 44 this month
> 
> ...


/links

"Please note, Fertility Friends does not endorse any type of self medication/DIY drugs administering . We ask you to seek advice from you GP/clinic on any aspects when self administering drugs of this nature without professional medical supervision/approval"


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## karen (Mar 23, 2002)

Cath / Superted - I agree, I'd be really upset if charged extra for intralipids or ivig. A consult is when you go in and have an appt. I still haven't called to book scan and ask for prescription as I'm worried about being charged - how ridiculous is that!

I also think and I know I'm probably in a minority here - that if he is charging for a £90 consult then he should let an ansaphone or secretary answer the phone while he is "in consult" and I'm paying for his time.  I hate it when we're constantly interupted and/or his attention is on the phonecalls while I'm trying to talk with him.

It seems that we're all willing to pay if we book a consult / time with him to discuss something. Its the unexpected charge when we weren't aware expecting which is the issue.

Choice many thanks for taking this on.

x


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## Angels4Me (Apr 8, 2006)

thank you very much Choice    I will investigate

angels


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## karen (Mar 23, 2002)

I've got an appt with P Armstrong for LIT on Aug 4th. He needs the blood tests faxed through by July 31st. Does anyone know how long the blood tests for HIV / Hep etc take through Dr G? Are they done in a day as usual?

I finally called Dr G's office. The secretary kept offering to put me through and I kept trying to dissuade her!


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## super9 (Aug 5, 2008)

Hi Karen

The blood tests through Mr G only take a couple of days and if n a hurry he gets them faxed to Paul Armstrong from the Dr's Lab.


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## lucky2008 (Dec 4, 2008)

Hi everyone

I hope u can help me. I have recently had 2 BFNS following ICSI. I have had treatment due to male infertility. I decided to have my level 1 immune tests done by my gp. Most results were normal apart from mild positive result to anti nuclear antibodies. I have decided that now it may be a good idea to see dr gorgy. I live outside the london area so would travel to see him. How do i book an appointment?do i need to be refered by my gp? how long does it take to get an appointment and how much would it cost the first appointment?
thanks


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## Cath34 (Oct 14, 2008)

You can pretty much get an appointment immediately, just ring up. If you google the fertility academy you'll find it. Good luck, he is lovely.


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## Cath34 (Oct 14, 2008)

Choice, Can you tell me again what vitamins / supplements etc... I need to be taking and what did you say about foods etc.. gluten free and all of that? Sorry to be a pain but I remember you saying a long list of stuff in Greece. Thanks. Cath xx


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## Choice4 (Aug 14, 2008)

Cath
You don't need to be on all these, this is just what I am on!!!

Gluten free diet- (helps reduce inflammatory processes in the body)
Asprin-( help blood flow)
Metformin-( Helps regulate ovulation,PCOS and reduce fasting insulin level)
CQ10( helps improve egg quality)
Fish oil- ( helps with blood flow)
Pycnogenol and Resveratol- ( antioxidants, 2 work better together)
Thyroxine-( To help bring TSH to b/w 1-2 ideal level for ttc)
Prenatal
Folic acid
Vit C,
Vit D
Vit E- ( help with lining)
Vit B complex
Selenium
Zinc
Iron tablets
Whey protein (help improve egg quality) from Holland and barret ( Fortress whey protein)
Wheat grass juice ( helps with egg quality)
Raspberry tea ( helps with lining)
Calcium( when taking cleaxine)
Steriods
Acupunture


Please note that there is no guarantee that any of these works, so check with your Dr before use!!
This is just my list of suppliments


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## Choice4 (Aug 14, 2008)

Hi Girls
I had a long discussion with Dr G, in his office today, i spent 1hr there
and discussed all the concerns raised, here is his reply.

1.He does not want to get a nurse as he feels it is better that he gives out all the information and instructions, to avoid the wrong information being passed on to the patients.

2.To Discuss any blood test results, he would like to see you face to face, and give you a copy of the result, and explain and highlight everything to make sure you understand. (£90 )charge
For those who are far away, and cannot travel down to london, he would only discuss the results when you have a copy infront of you either by fax or by post to avoid missunderstanding and would spend time explaining it to you (£90) charge

3. Phone calls just to ask a quick question, no charge,
Quick question before ivig or intralipids no charge. Calls to discuss results there is a charge.

In my opinion:
It is always good to clarify about the charges with him, when you are on the phone,
But please try and be reasonable about it and don't take up too much time for a quick question!!.
It may also be a good idea to send him emails and if no reply, chase it up via reception.

I think he is doing quite well being accessible to us directly at most times both by phone, text, emails, he even phones Dr Tsgaris or Armstrong to arrange appoitments for us.
If I phone for 3-4times for questions and no charge, if he charges me next time  i don't think I would complain, As I know that phone calls interupts his clinic time with others and sometimes may take time.
I know that sometimes he also writes down the phone calls in your records, so he knows how often you call and what was discussed.

This is my opinion, so if the question is not urgent email him, then get the sec to chase up the email reply.

NB: He had a nice young lady today at reception, and she was very nice,
His main sec was  off sick!! so he had to get in this graduate lady!!


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## Cath34 (Oct 14, 2008)

Thanks so much for that Choice, you're fab!!!! Its  long list!!!!!! A few more for me to add to my list!!!! 
How are you anyway? Whats next for you now? Are you seeing Dr G for anything soon?


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## Choice4 (Aug 14, 2008)

Cath, i would retest LAD, in 3wks with Dr G, thats the next plan


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## Cath34 (Oct 14, 2008)

is that the same as me or are you waiting the full 4 weeks? My retest is 3 weeks after 2nd LIT. Have you got any symptoms eg itchyness, swelling? I have nothing this time. I'm wondering if I should email Dr T to ask if this is ok to not have any sypmtoms, just a bruise and marks from needles!!


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## super9 (Aug 5, 2008)

Hi Choice

Was it you that popped yr head around to where Mr G does IVIG today in the back room? Also do you happen to know if he is away from tomorrow as opposed to from the 13th of July?


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## Choice4 (Aug 14, 2008)

Super 9, yes it was me with the head band!!
I don't think he is away 2morrow

Cath same as you would test in 3wks , so it can all fall into my august cycle and if i need more LIT, may get a booster from Armstrong


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## sarahh (May 20, 2006)

Thanks for your hard work Choice - I just find his answer strange about blood tests as he has discussed them with me on the phone and despite asking several times for copies I have still not received any!!!!  

Anyway, it seems that unless its a quick question then he will charge the fee - I need to ask him about something sent him an email on Monday but no reply so guess I'm gonna have to phone today to try to get an answer as he is away for a week - gulp another £90 down the pan!! 

Cath I've really had no reaction this time either.  I don't expect Dr T will give much reply other than just wait and see what result is on retest and then we'll discuss it further if not raised levels as required - that is pretty much what he said to me during our discussion last time - so I'm not bothering to email him and ask if it is usual to have less reaction 2nd time round.  Hope DH is feeling a bit better now?  

Sarah x


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## Cath34 (Oct 14, 2008)

Yeh good point Sarah, maybe I wont bother. I really dont want to have to go back to Greece again. Its so disruptive and oh boy does it take it out of me and DH!! Well Choice I'm glad we are retesting at the same time, it makes me feel a little better now as you are he guru on all this fertility stuff!!   Like Sarah said, thank you for all you do, we do appreciate your knowledge. 
Even though I have a partial match with DH, I could still have LIT with PA couldn't I? 

Well I my best friend told me last night that she is pregnant again!!!!!!! 1st and only time of trying!!!!! I very nearly burst into tears!!! She has a 17mnth old little girl and we were both actively trying at the same time 3 years ago!!! Here I am still trying and she's on her 2nd!!! It really freaks me out now!!! Sorry girls, I just had to share that with you. xx


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## Sprinkles (Nov 6, 2008)

Cath ~   new pg announcements never get easier huh   so sorry  

Choice ~ thanks for the clarification seems reasonable to me 

Well had ET at manchester today, my embies survived the thaw and grew some.... woo hoo, am allowing myself an hour of optimism then back to reality.  Nurse coming round to do intralipids tomorrow and am putting my feet up all weekend.

Hope everyone has a great weekend xx


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## Cath34 (Oct 14, 2008)

Great news Sprinkles. Fingers and toes crossed for your bfp   Have a lovely relaxing weekend.


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## Choice4 (Aug 14, 2008)

Sarah
If you have not recieved copies of your blood test, please ring his sec, give a fax number and what tests you want faxed i am sure they can arrange it.
Call him if you have a question, you may be suprised no charge, as I have discussed it fully with him.


Cath , yes Dr Armstrongs LIT is also an option, esp. after having 2 in greece, it would just be a booster.
I would wish your friend all the best i her pregnancy , and i can assure you that your time is coming soon, have faith my dear, you are doing all you can at the moment!!

Sprinkle 
Good luck in your 2WW, it seems you are having intralipids after transfer, did you hve it before!!


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## Sprinkles (Nov 6, 2008)

thanks for good luck wishes ladies

Choice ~ yes had an intralipids on 2nd at Dr G and this one today at home am hoping it works and does the trick, nurse was lovely.

Have a great weekend everyone off to put me feet up x


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## Cath34 (Oct 14, 2008)

Hi Sprinkles how are feeling? Hope you've been resting.


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## Sprinkles (Nov 6, 2008)

Hi Cath, yes have been chilling as much as I can, supervising DH cleaning the house which has been great, and need to pack for my holidays but going to do a little every day.  Am back to work tomorrow and from tomorrow is implantation days as far as I can figure so going to just do enough to have good blood flow but thats it.  Got AF cramps but I know that can be the pessaries, and still havent mastered the clexane injections without bruising but hey will have to live with it.

Hope you're feeling ok and the LIT does the trick for you, have that on my list for options IF this doesnt work along with humira which I havent done either but am still a little sceptical about that.

Hope all you lovely ladies have had a good weekend and praying that this week brings good results whatever they may be....


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## sarahh (May 20, 2006)

Hi girls, well I found the best way not to get charged by Mr G - have a 2yr old screaming in the background and he can't get off the phone fast enough        And yes, I don't mean that to sound insensitive as I know you'd all love to have a 2yr old running around in the background but thought I would make you laugh.  Don't know what it is (think it may be called S O D S law!) but whenever I pick up the phone to Mr G when DD is in bed you can guarantee that she wakes up crying then won't stop cos I'm on the phone.  So got through on Friday and literally he picked up the phone and said "how can I help" and off she went.........  so I got a few quick questions in then he said ok I'll leave you to it..... !!!!!  

Anyway today is Day 1 for me (oh joy   ) so I am starting Cilest again tomorrow then wait for next period to arrive (not quite sure when I come off Cilest but I'll phone and ask him that nxt week when he is back) then we will hopefully get on with tx   that my LAD results come back ok.......  

So Choice / Cath - you testing on 21st July??  I'm going to test after the full 4 wks on 28 July.  

Sprinkles -   those  embies stick this time for you.  Might get you to PM the Healthcare at Home details to me as I think that sounds a lot less stress than a 2hr train journey / tube journey to London then sitting in the waiting room hooked up to the drip!!  Do you mind me asking how much it cost??  What other drugs are you on?  Have you had IVIG?  

Cath - I remember when we were doing IVF the first time round and people told me they were pg it just felt horrible.  Our friends who had their little girl 5 days before our DD was born are now 20w pg and it just happens so easily for them.  Don't get me wrong, I am delighted that people don't have to go through all this cos you wouldn't really wish it on your worst enemy would you but there again it is hard to deal with sometimes.  I know its not the same for us now as we are so lucky to have DD and whatever happens for us this time at least we have her but I do still get those feelings 2nd time round.  Does she know you are going through all this?? 

Anyway, enough rambling on from me (I've not had computer working all weekend as changed to BT Vision and stupid home hub not been working properly - I've obviously got withdrawal symptoms!!) 

love n hugs, Sarah x


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## Cath34 (Oct 14, 2008)

psml laughing about your DD getting you off the hook!! Good to have to back on here Sarah.
How long have you bee on cilest then Sarah? Surley you could cycle a week after me if your testing a week after me??
Yes my best friend know all about me and as much as I love her she is totally oblivious to what I have to go through. She's breezes through life bless her. 
Hang in there Sprinkles.


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## sarahh (May 20, 2006)

Sprinkles - when is test day for you?? 

Cath - glad to make you smile!!  I started Cilest today - day 2.  Does Mr G just take you off it when you are ready to cycle then??  Doesn't it mess around with lining thickness and stuff?  Been wondering that for a while.  

I've got another question - I'm MTHFR hetero and thought that I should be on 5mg folic acid but when i questioned this again with Mr G on Friday he said no, stay on normal folic acid dose he said not necessary if MTHFR hetero - but then I thought the MTHFR issue whether **** or hetero is partly to do with the body's ability to process folic acid which is why a high dose is required?  Choice - maybe this is one for you??!!  

So what date you having your blood test then Choice / Cath??  

Sarah x


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## Choice4 (Aug 14, 2008)

Sarah
I think with the cilest, he has given it to you to regulate your cycle, when he takes you off it, then he would expect a period soon and he would start other meds for you.

MTHFR, yes Dr G is corresct that hetero is not too bad, but if you can get hold of 5mg folic acid on your own then go ahead and take it ( to cover all avenues)or take 2 tabs of your normal folic acid,and Vit B12 AND Vit B6 (folgard contains folic acid high dose and Vit B12, and Vit B6) if you insist, that you want 5mg folic acid, then get him to write you a prescription, I don't see why not.

But to be honest with you, thats the least of the problem, so don't worry too much about that, as far as you would be on asprin, and clexaine

You can ask more questions on the MTHFR yahoo group, see link

http://health.groups.yahoo.com/group/MTHFRPG/

/links


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## siheilwli (Jan 18, 2006)

Girls, saw Dr G last week. Am going to for blood tests tomorrow. Really frustrated that I have misplaced Dr Beers book. Hope I get all the results explained in detail. Hi to you all.  

Cat


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## Angels4Me (Apr 8, 2006)

anyone know what 400ug (international measure) folic acid is equivalent to? Im taking my folic acid in Zita West VitaFem

angels


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## Choice4 (Aug 14, 2008)

Angel4me

I hope this may help you??

1 microgram = 1000nanograms


1 milligram (mg) = 1000microgram

1 gram (g) =  1000miligram (mg)


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## sarahh (May 20, 2006)

Choice, what is the standard "dose" of aspirin - I forgot to ask Mr G on Friday and feel a bit stupid for asking but I've never been on it before!!  Do you just get a packet of aspirin from the chemist - I assume the dose is standard on most same as other painkillers etc. ??  

What date you re-testing LAD? 

Sarah x


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## Cath34 (Oct 14, 2008)

Sarah, standard dose of asprin is 75mg. Dr T told me to be on 100mg but over here we dont have it, I asked the docs. Also if I doubled it it would be too much.
I know he hasn't told you to take asprin but if you're hetrozygous I def would. It all helps with blood flow to. I also have acupuncture too for increased blood flow and after ET is particularly important. I 'm going to go to Zita West clinic in London I think.

Does anyone know or has heard that if you have a DQ alpha match with your DH that donor sperm or surrogacy is the only way?? I really hope not as we share one gene, hence the donor lit. Help


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## beattie2 (Dec 30, 2005)

Hi Cath- don't worry about the DQ Alpha match too much- I am a close DQ Alpha Match with DH and donor lit eventually got my blocking antibodies up and I have made it to 28 weeks- fingers crossed we make it all the way. Good luck with with your cycle

Hi to everyone else

Best wishes to all
Bx


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## ♥ Mighty Mini ♥ (Apr 10, 2008)

Cath - A cycle buddy of mine was a close DQ alpha match to her DH and she is pregant. They can sort it out. DOn;t ask me what with tho!!! 

I bought alan beers book and got it today so i;m now convinced about immune testing !!!!   clinic is not tho!


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## Cath34 (Oct 14, 2008)

Thanks Beattie and Mini, I really hope the donor Lit has done is trick!!   
Good luck for the rest of your pregnancy Beattie.   
Mini- you wont be able to put that book down!!!   Its a bible!!!


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## ♥ Mighty Mini ♥ (Apr 10, 2008)

If i do immune tx do i have to tell my clinic as we will be doing NHS tx again but the immunes will be with dr gorgy? My clinic do not agree with it   Just wondering if I need to tell them or not? It might jepordise the NHS tx?


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## Sprinkles (Nov 6, 2008)

Hi Mini
I've just had FET with NHS clinic in Manchester whilst having immunes with Dr G and it went a lot more smoothly than I thought to be honest if that helps.

I spoke to my clinic about it before embarking on the appointments etc and they werent necessarily against it but definately didnt do it.  Have just kept them informed of the additional medication I'm taking and they've been fine, to be honest I think they've got the time with me, and when I do discuss it with them they're a bit shocked on how much us ladies know about the whole thing....

Good luck xx


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## ♥ Mighty Mini ♥ (Apr 10, 2008)

thanks sprinkles


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## Choice4 (Aug 14, 2008)

Sarah

Asprin in uk is 75mg in USA is 81mg

Mini
I would suggest your thread carefully with your NHS clinic as them may refuse to cycle you

I think you may may say something like you would like to have do some immune tests to see if it is the cause of your problem,

They would say they don't do it or believe in it but at least you have mentioned it.

The only thing that may be added to your treatment protocol would be something like, asprin, clexaine, ivig/intralipids, steriods, ?? Humaria

Most immune treatment you may do before you start your cycle

But the tests results would guide you!!!


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## Toffee Girl (Mar 20, 2009)

Hello All

Looking for a bit of inspiration - I met a few of you in Athens on June 2nd - it was my second LIT and I did my LAD retest and got the results a couple of weeks ago.  My antibody levels had gone down not up!!  They were pretty low anyway and had gone down to 2.3, 3.3, 15.7 and the last one went up from 7.7 to 8.3.  Needless to say that I was gutted.  TNF had also gone up on both re-tests, from its original 39 to 56.  I PM'd Omni whose levels hadn't improved vastly either, but who has a BFP, so I know there is hope!!

I went to see Mr G last week and he did make me feel much more hopeful - he said that the levels never stay the same and are viewed as a range that fluctuate on any day so going backwards is not a concern - he also said he had four ladies pregnant last month and not all of them are success stories in terms of results and stats.  So, as we had already decided to try naturally for this month and we opted to complete this month and then prep for a cycle in early August, so I did my first IVIg on Tuesday last week and am doing clexane, aspirin, steroids etc this month anyway.  

Has anyone else found themselves in this awful situation where the LAD results are bad and what if anything can we do next?  I know Omni's is a hugely inspiring story, and if there are others out there with positive stories please can you share your thoughts?  

Mr G did reassure me that the IVIg, humira and LIT all work in an interrelated way and that even if the results don't always look good there are positive stories.  Anyway, we are plugging on with IVIg, a cycle next month and we have settled on a booster LIT with Paul Armstrong, as I am unfortunately on holiday at the moment and missing Dr T's clinic dates. 

Does anyone know of any new research avenues beyond LIT?  Are the Beer Centre looking at anything else that might help - or Choice4, what about your lovely Dr Sher?  Or is this the end of the road? All thoughts welcome!

Cath - I know its no consolation, but my best friend, whom I adore and who is a very sensitive soul when it comes to my 7 years of ttc etc, has managed twice to tell me she is pregnant during phone calls when I have rung her up to say my IVF has failed yet again.  She knows I would kick her butt   if she kept anything from me like that - and I have to say that I have been upset by other friends trying to hide their pregnancy news, only to be the last one to find out and feel really stupid.  But would I prefer not to be told during the same phone call when I am trying to bleat on about my own disaster? - yes!!  She has managed to produce three boys in the last 4 and a half years!  It's never easy to get that kind of news, so I hope you are feeling a little better now.  

Lots of love and luck ladies!

Toffee Girl xx


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## Cath34 (Oct 14, 2008)

Hi Toffee Girl, welcome back, some of us have been wondering where you got to?
I am due to retest my LAD on Mon which is 3 weeks after my 2nd LIT. I am very very worried that the same thing will happen to me. Thats 2 of you with low results now, its not ideal is it? Myself, Choice and Sarah are the next to test and I wonder what it will show? I feel very disheartened by this Lit, it's almost as if its just not working and is a "rip off" I guess we'll never really know. 
Omni is certainly inspiration to us all and I'm clinging on to that. I am on down reg now and have a scan next weds. Maybe we will be cycling together if you are early Aug aswell?


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## Choice4 (Aug 14, 2008)

Toffee girl good to see you here
I know that some of Dr Beer's patient still had low LAD after the LIt and they related it to 2things either a lab error or they need booster LIT., But they still said that the LIT was in thier body, I know the IVIG helps to boost things even if LAD is low

I know another girl who has had 3M/C , she did not do LIT, did not do Humaria, Had Ivig and intralipids, and is pregnant with twins, and has been having IVIG since

If you would like to meet some of the Beers patients or those who have done LIT in mexico, try the link below

http://health.groups.yahoo.com/group/immunologysupport/messages

As for Dr Sher's he only does intralipids more or less, but they use good protocols and have good labs

/links


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## Pinpin (Nov 4, 2008)

Hi girls

I introduced myself on this thread a few weeks ago and have since seen Dr G and been sent for what I was told was the full immune testing (I had 16 vials of blood taken  and dh had 6). Following some advice I read on here I called Dr G's secretary this morning and she faxed me my results. I was hoping to use your expertise and that some of you might be able to help me understand 1/ what's wrong 2/ how bad it is and 3/ how it is treated (ivig? Intralipids? Humira?)

Here are the results:

NK ASSAY (%Killed) PANEL

Name Result
50:1 21.9
25:1 16.1
12.5:1 9.9
IgG conc 12.5 50:1 ** 6.1
IgG conc 12.5 25:1 ** 5.4
IgG conc 6.25 50:1 ** 7.1
IgG conc 6.25 25:1 ** 7.0
%CD3 74.2
%CD19 3.3
%CD56 * 22.5
% of CD19+ cells, CD5+ * 31.0

Note: ** > 10% reduction in killing at each effector/target ratio

LEUKOCYTE ANTIBODY DETECTION

Name Result
Flowcytometry Negative
[T-cells] IgM+ 20.1
[T-cells] IgG+ 22.2
[B-cells] IgM+ 29.5
[B-cells] IgG+ 12.6

ENDOCRINOLOGY
TSH 1.01

IMMUNOLOGY

Thyroglobulin Antibody 20.5
Thyroid Peroxidase Antbodies 5.4

Anticardiolipin ab's IgG 3.2
Anticardiolipin ab's IgM 2.3
FTA Negative
Antinuclear antibodies Negative
Anti-dsDNA antibodies Negative
AMH 42.60

Many thanks in advance. Whishing you all lots of luck 

Pinpin x


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## Maarias (May 4, 2005)

Hi,
I don't seem to be getting a response to this on the immunes thread:
does anyone know how to wean off the dexamethasone at 12wks? I am on 1mg.
Thanks,
Mx


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## Cath34 (Oct 14, 2008)

Maarias, Onece your down to 1 tablet, I was also told to take one every other day and then 1/2 if you can split it?  Dont worry about it as long as its a gentle wean off you wont get side effects.


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## Choice4 (Aug 14, 2008)

PINPIN
I would suggest you wait till Dr G is back to interpret your results as he would highlight it for you

But this is what I can say, about the results
1.Nk 50:1 = 21.9  this should be under  15 ( so you may need IVIG or intralipids.

CD 56 = 22.5 this should be under 12( need ivig or intralipis)

CD19, +CD5=31 this should be (5-10) (need ivig or intralipids


2.LAD is negative should be positive, ( you need LIT)
B cell =29.5  is more important ( should be b/w 35-50 or more)

3.AMH = 42.60 this may indicate very good fertility or PCOS

DId you do TNF, or MTHFR

( in conclusion you may need IVIG/Intralipids, LIT, Asprin?, Clexaine?, steriods?)

I hope this helps, but Dr Gorgy would give you the final answer


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## Maarias (May 4, 2005)

Cath, when you say one tablet,is that the 0.5mg one?


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## Cath34 (Oct 14, 2008)

I cant remember the dosage as it was a long time ago, I have now switched to Pred but its the same principle. You just need to gradually reduce your intake to wean yourself off them so that your body adjusts slowly and not too quickly.


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## Sprinkles (Nov 6, 2008)

Evening ladies

Just wanted to bob on before doing my last bit of packing, am off on holiday tomorrow morning early doors and wont be back for a couple of weeks. Test date is mid holiday so hope I can bring some good news back to the thread when I do but to be honest not holding out much hope, had a few niggly symptoms that vanished all at once yesterday afternoon like they usually do, each time I just know when it happens I hate it.  Anyway we'll see.

Good luck to everyone and hope to catch up on lots of good news in a couple of weeks x


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## siheilwli (Jan 18, 2006)

Glad to say I finally found my Beer book - and have even brought it into work tonight to have a quick read! SHhhh!  Anyway, had our blood tests on Tuesday, anyone remember how long do they usually take to come back, and how long after tests did you book your follow ups with Gorgy,

thanks
Cat
x


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## twinkle123 (Mar 1, 2008)

Hi everyone

Just wanted to introduce myself.  I've been through 4 IVF cycles and am about to start my 5th one pretty soon.  I've got an appointment with Dr Gorgy on the 27th July to start some immune testing.  I won't be cycling with him though because I'm in Aberdeen and it's a fair bit to travel!

Does anyone know roughly how much money I should be expected to pay for blood tests?  It would be fine to have a rough idea before I go for my appointment.

Anyway, just wanted to say hello
Lots of luck to everyone  
Susan
x


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## Maarias (May 4, 2005)

Susan,
I think the initial full panel of NK tests cost £750. He may also want to test other things like LAD and DQ Alpha (to see whether you need LIT). I can't remember exactly how much these cost.
On the whole I'd factor in around a grand for the first lost of tests!
Good luck, hope all goes well!
Mariax


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## siheilwli (Jan 18, 2006)

Mine came to £1410, including first consultation fee, but that didn't include all the tests!!


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## Toffee Girl (Mar 20, 2009)

Hi Ladies

Yes sorry I disappeared off the face of the Earth!!  

Cath34 - yes its a worry all this LAD level testing.  Another lady was kind enough to point out that historically there have been moments where there have been problems with the  LAD results from RFU (ie coming up lower than expected).  The alternative  (and it it more expensive) is to have Mr Gorgy send your next LAD bloods direct to the Beer Centre instead - which has a more reliable track record. Certainly worth thinking about.  Depending on dates over next week or so,  I think I will be aiming for EC between Aug 5-7th, so it does like we will be on  a close time schedule!  How will you manage with the travelling etc?

Choice4 - Thanks for all of that, yes I will check out the link and see what else I can rustle up!

Hope you are are all well?

Toffee Girl x


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## Cath34 (Oct 14, 2008)

Toffee girl, thats a really good idea. Are you going to do that? We will be cycling bang on pretty much. I'm going in that week also!

Choice, what do you think, should we have him send our bloods to Beer clinic direct? It sounds tempting I must say. If its going to give an accurate result then it saves wasting time retesting all of the time??


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## Choice4 (Aug 14, 2008)

There have also been some girls who used the BEEr lab, and still got low LAD even after the LIT.
The lab had to retes their original sample then found out their LAD was not that low even before the test

I would say stick to RFU as they did your first test and have your records,
Whatever the result the LIT is in your system even if you need more A booster is better that nothing


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## superted (Sep 21, 2004)

Hi Girls

Been away so just trying to catch up.

Choice glad all is clarified with Dr G about paying for a follow up appt.

Have to say my follow ups apart from 1 has been when I have needed my blood results so I am more than happy as I have been given advice too at the time.  However the other time I had a scan and needed ivig at 6 weeks and was a bit miffed to have been charged the £90 then.  I knew the reason why I was coming in to check for hb and if ok was to have ivig or intralipids.

Anyways I have to say it is good that he is available easily although Dr G is getting busier by the week.  Have to say though his receptionist needs to help him out a bit more sometimes she could easily do something rather than say get him to call you back.  Or rather can you call back in such and such time as he is with a patient.  Arghhhh that so annoys me especially when I am at work and end up keep phoning back sometimes as many as x3 times.  Anyone else feel like that?

Am up to see Dr G this Wed if anyone is up there too.  Am to find out if my body reacts better to the ivig or intralipds. Praying that it will be intralipds as we've had 3 ivig so far and its breaking the bank.

Just out of interest how long does Dr G advise to keep having the intralipids/ivig for until how many weeks pregnant?

I wil catch up again properly when I have had time to read though everything.

Good luck to everyone.

superted x


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## Cath34 (Oct 14, 2008)

Hi Superted, good to have you back. I'm glad you have enjoyed your time away. I'm going to see Dr G at 11.30am on Weds I think its for a baseline scan. I'm not sure when I'll start stimms. Can I ask where did you get your stimms drugs from? Does Dr G give them to you? Well not give exactly  but you know what I mean?!!! lol
So what was the outcome then with the £90 charge? Do we have a better idea now, I must have missed that bit? Choice did say she would mention it but i dont know what happened?
Good to hear all is going well with you? 

I'm getting worried now that the IVIG wont be enough to lower my NK's as they are v high. 50:1 is 34 and with 2x ivig it only drops to 16.5. I think Ive read that correctly. It is a big worry for me but I decided to hve Intralipids too just to see and I'm going to ask for the test on weds also. Time is getting very close now and I'm bricking it!!


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## dakota (Feb 6, 2007)

New home this way..........http://www.fertilityfriends.co.uk/forum/index.php?topic=200534.0


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