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  • "Zara_London" started this thread

Posts: 17

Reg: Jul 18th 2010

Location: London

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1

Thursday, March 10th 2011, 4:04pm

Do I Need Immune Tests? :(

Hi everyone.

I just wanted the advice and suggestions of the girls here who have knowledge and experience of Immunology.

Here is a little bit of background about me. I am 27, have no known fertility issues. We have been trying to conceive for 3 years now. Just over a year ago, my DH was diagnosed with Azoospermia. We went ahead with a surgical sperm retrieval and we found lots of sperm which was a relief! The consultant has always been so optimistic and hopeful and was sure we’d get pregnant with ICSI. Well, 2 ICSI cycles behind us, we’re nowhere near a BFP! It’s heartbreaking and confusing. On both cycles everything went perfectly. On the first cycle we had two Grade 1 and 2 embryos put back in, and the second cycle we had one Grade 1 and one Grade 2 embryos put back. We have over 60% fertilisation.

My consultant didn’t change anything on both cycles apart from giving me a higher dosage for Stimms on the 2nd cycle. She said the embryos are good quality and fertilisation is good considering the sperm isn’t all too good.

My consultant is lovely but the only issue I have is that she doesn’t explain things in detail and it gets very frustrating. I understand the first cycle, they were just getting to know my body, etc, but even after she just said there’s no explanation why you are not pregnant, on paper looking at everything we would have expected you to be pregnant, you’re cycle was excellent, and you have some lovely embryo’s put back.

The only thing I found strange was on ET on my first cycle, they asked me to have a full bladder but for my second cycle, they asked me to have an empty bladder. When I asked why this was the case, the nurse asked me if I had any problems in my ET on my first cycle, I said no, not that I know of. She then said, well you have a retrovert uterus, which is normal for 1 in 3 women and we don’t need your bladder full as your uterus is already in the position to make it easier for ET. So why didn’t they notice I had a retrovert uterus the first time round?

I have had a thyroid test done at my GP recently and she said that everything was normal. I do have asthma but I don’t know how that would affect anything? Is it worth me having the Level 1 and 2 Immune tests at ARGC? Or am I just worrying too much? You can’t help but worry considering the consultant was so optimistic about my cycles and getting pregnant. You just can’t help but think your body has failed you.

I will be having a follow up consultation soon, what questions should I be asking? Any help and advice would be really helpful. I have found more information on FZ than from my clinic.

:(

Thanks for reading.
Zara

ruthie

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  • "ruthie" is no longer a member of FZ

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Thursday, March 10th 2011, 4:42pm

The strict answer Zra, which will be a really annoying one, is that whether or not it's worth you having the immune tests depends on the results!

Firstly, your outcomes aren't necessarily that weird. Success rates vary between 1 in 2 and 1 in 3 for each cycle, so two failed cycles isn't that abnormal. The problem is when you've only had 2 you can't see accurate stats. Ladies on here who've had lots of cycles but miscarried, often show about 50% pregnancy rate (I'm one of them.) It's v uncommon to get pg every time.

Secondly, I'm not convinced that they can predict outcome that well from embie quality. If they could pick the best embies easily success rates would be way higher. There are countless stories on here of ladies with really rubbish egg yields and poor quality embies getting pg, and those with tons of eggs, tons of frosties and top quality embies and not getting pg.

However, having said all that it kind of depends how you feel. If you are someone who likes to explore every avenue then immune testing may be a good idea. It will be cheaper to have the tests now than have another cycle that doesn't work. The problem is that no one can tell you whether the tests are meaningful. ARGC find immune probs in 80% of the women they test. Now, to be fair, they are testing women in whom they might expect to find immune issues, ie repeated m/c or cycle failure, BUT no one knows how many normal women might have probs on bloods but no probs conceiving. The tests simply haven't been done. That's why the NHS won't do immune testing, and why often NHS cons won't even discuss it. It's not that they don't know about it (though some may not), but more that they can't discuss issues that haven't been proven or had proper clinical trials.

My reasoning for going down the immune route was that ARGC get the best results in Europe currently, and they attribute this to their immune testing.I didn't want to go through another cycle and potentially another m/c without knowing that I had explored every avenue. I don't regret having the tests done, though it can get very expensive. A full immune ARGC cycle cost me about £13000 and I know ladies who have spent closer to £20000. CARE can be cheaper, but it still is a significant cost on top of the cycle cost.

I would say that looking at your history there is no real indication for immune testing. However, you might want to do it anyway. The worry would be that if you have probs and don't test, you could have another failed cycle. However, if you don't have probs, and you test and probs show up on bloods, then you could end up spending a fortune on immune treatments when you would have got pg anyway. And the truth is that no one can tell you the right thing to do. It depends on how you feel and what your gut reaction is. My gut reaction was to have immune testing and I'm glad I did, but it has pretty much bankrupted us!

Good luck whatever you do.

xxxx

Maria72

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Thursday, March 10th 2011, 6:33pm

Hi and welcome to :FZ:
Ruthie has given you a fab answers Zara. Wait for your review appointment maybe ask some more questions. Most consultant don't explain things unless you ask.
Check these section for some questions to ask:
INITIAL AND FOLLOW UP QUESTIONS

Good luck! babydust

chatterbox

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Friday, March 11th 2011, 3:20pm

Hi Zara

Ruthie has spoken some great words of wisdome there. I too, after tx #3 thought there was something amiss, but my consultant at the time poo-pooed the idea. I regretted not getting tested earlier because as Ruthie says, it would have been cheaper and less emotionally draining to have paid £1200 for tests than 3 more m/c.

I went with CARE this xycle who are cheaper than ARGC, but this tx has still cost us approx £7k as some of the meds (Intralipids) cost £300 a pop!

The very best of luck to you.

xxx

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

Posts: 7,737

Thanks: 109 / 63

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Friday, March 11th 2011, 8:46pm

Didn't want to read and run, but Ruthie answered it all and extremely well!! Just wanted to wish you the best of everything whatever your decide to do. xxx

  • "Zara_London" started this thread

Posts: 17

Reg: Jul 18th 2010

Location: London

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Friday, March 11th 2011, 9:51pm

Hi girls,

Thank you very much to all of you for getting back to me.. :)

Ruthie: I understand what you're saying. Thank you for your useful insight. The dillemma I have is that I have to wait a few months for my next cycle (on the NHS by the way) so I feel like I need to do something pro-active. Maybe I should wait after my next cycle to see the outcome and then decide if I should go down the Immune route? Say, if I had my Immune tests done now, and they did show up problems my clinic won't adminster the extra drugs that are used in Immune cycles would they? I'm sorry to sound a bit dim, I'm still learning and catching up with all of this and getting my head around it all. One of the main reasons why I would like the Immune tests is because it would give me some peace of mind in the sense that I'm thinking at the moment maybe there are other issues that my clinic has not picked up on, and it would give me closure by having the tests whatever the results. And I don't mind paying for the tests. Argghhhh, it's so frustrating, lol.

What you said about the fact they cannot pick the best embies makes sense. Do you think my embyros aren't good enough that's why they've never implanted? This cycle we got 14 eggs, 13 were good for ICSI, 7 fertilised, 2 put back, and they said the rest were not good enough to freeze (I don't know what that means).

Maria 72: Thank you sweetie, I checked the link and it gave me some questions that I will be asking my consultant next week. If you girls can think of anything else I should be asking, please feel free to let me know.

Chatterbox: I'm so happy it worked out for you in the end and you will have a healthy and beautiful baby soon. Congratulations. I pray it goes well for you. I don't think we could afford £7k for a cycle... :/ And that's what scares me about getting the Immune tests done, if there are problems picked up, then the drugs that follow the cycle are very expensive.

Amazing Grace: Thank your for your kind words hun.

I have a friend who I met, funnily enough, when my DH was getting his SSR done and so was her DH at the same clinic. He has Azoospermia too and they had 3 failed cycles and just got a BFP 2 weeks ago from their fourth ICSI cycle. Their consultant was advising them that they switch to donor sperm but they refused.. And it worked out for them in the end. I guess that gives me a bit of hope too.
Zara

chatterbox

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Sunday, March 13th 2011, 2:50pm

:hugs: keep the faith and stay hopeful Zara :D

xxx

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

ruthie

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  • "ruthie" is no longer a member of FZ

Posts: 3,607

Reg: Aug 31st 2008

Location: Cornwall

Children: 3 angels looking after us.

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8

Sunday, March 13th 2011, 5:35pm

Your clinic may give you some of the drugs. It totally depends. Have you asked your current clinic about immune tx?

After my second m/c I asked about immunes. My cons was v honest and said that she was yet to see evidence that it worked. She did, however, offer to prescribe clexane, aspirin and steroids on our next cycle. In the event we went to ARGC and had 3 cycles with them to no avail. I felt happier with a tailored immune protocol rather than a one size fits all one. However, we've now gone full circle. Our 6th cycle was done at our original clinic, with ARGC managing the immune stuff. (We live 5 hours away from London so our ARGC cycles were a logistical nightmare!) On our next ICSI we aren't even involving ARGC for immunes, we're just following the same immune protocol and my cons is happy with that. There is no evidence that steroids, clexane or aspirin cause a problem in early pregnancy, so some clinics may agree to give you those anyway. I know there are a couple of clinics routinely using steroids after ET. What you won't get is a tailored approach, or drugs like Humira, intralipids or IVIG as no clinic will use those for the sake of it. To get those you would need to be at ARGC, CARE, or Dr Gorgy.

Realistically I would look at it like this. Can you afford an immune cycle? As Chatterbox said she spent £7k, ARGC is more like £10k and some ladies spend a lot more if they need IVIG. If that isn't an option, and for many people it isn't, then I would consider speaking to your current cons about whether she might prescribe some of the drugs. More and more ladies are asking about immune tx so I'm sure you won't be the first to raise it with them. If you could possibly afford immune tx then it might be worth getting the tests. My concern in some cases is that people have the tests, find a problem and then can't afford immune tx, but feel like there is no point having more cycles without immune drugs. As Amazing Grace's experience has shown, just because the bloods show a problem, it doesn't always mean that a problem is there. This is a fledgling, inexact field of fertility and the true significance of the blood tests is yet to be determined. Give it another 5 years and I think immune stuff will be the big breakthrough, it's just that at the minute us immune ladies are the guinea pigs, rather than getting the benefit of a truly refined science.

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Reg: Feb 18th 2011

Location: Italy

Children: Our miracle baby is on it's way!

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Sunday, March 13th 2011, 6:53pm

Hi Zara,

Hope you got my last pm reply ok. Thought I would add to this thread aswell. If you have any signs of immune issues (such as an auto-immune disorder or signs of failed implanation on natural cycles) then definately have the immune tests. But as I say, it would be worth having an initial consultation with an immune doc to ask their opinion. This could put your mind at rest or having the tests could also put your mind at rest.
If you have the tests you have to be prepared to have and pay for the immunology drug treatment though. Personally I think having the tests and then not having the treatment would be abit pointless. If you can afford to have the tests and the treatment then go for it. If you don't do it would you always wonder about it? If you don't get pg in the next cycle, how will you feel then if you haven't done the immune tests? That's the way that I looked at it. I also feel much more positive after having had the tests and I don't even have the results yet! - but I feel that whatever the results are will be positive for me - either I don't have any immune probs so I can move on from thinking about it or I will have immune probs, which is what I strongly suspect anyway, then I can have the treatment which is another positive step. I also feel much more positive about having IVF if it's alongside immune tx.

At the end of the day, it is your body and only you can know your own body and feelings. So it has to be your decision but I hope that we have all helped you with your decision. I was also having 2nd thoughts and doubts (as you may have read) before going for the tests. But I have been suspecting immune probs for a long time now and would have kicked myself if I hadn't done this now (I actually wish I'd had the tests 6 months ago!). To be honest, if my cycle works then I don't care what it was that made it work, ie: if it might have worked without immune tx or if immune tx might have worked without having the ivf ... if it works I don't care! I also think that successes are often due to a combination of things. I'm just trying to do all the things possible that might make it work!

Ruthie is completely right about immunology being such a new and undiscovered thing. Very few people have even heard about it. I think we are the guinea pigs and I agree that in 5 years time everyone will be talking about it. Let us know what you decide to do.

xxx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
My diary


chatterbox

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Reg: Nov 30th 2007

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Wednesday, March 16th 2011, 6:26pm

I prefer to think of us as immune ladies as TRAILBLAZERS rather than guinea pigs :snigger:

xxx

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

ruthie

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  • "ruthie" is no longer a member of FZ

Posts: 3,607

Reg: Aug 31st 2008

Location: Cornwall

Children: 3 angels looking after us.

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11

Thursday, March 17th 2011, 10:07am

You are v right CB!

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