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rb76

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Thursday, August 11th 2011, 5:37pm

Should we have the immunology tests now?

Hello ladies

We have just had our second bfn. We had 4 embryos on the first cycle (1 put back but grade 3) and only 2 this cycle (only 2 fertilised but were good quality and we had a day 2 transfer). Previously we have been TTC since Dec 2008 and are unexplained, all our results are fine.
We know we need ICSI for sure as I responded well last cycle and had 11 mature eggs but do you ladies think this justifies having the immune tests too? We are a bit unsure what to do next really

Thankyou!

Me - 36 DH - 48. TTC since 2008
March/April 2013 Immune DE ICSI Gennet, Prague :BFP: [zx076] [zx076] :girl: :girl:
Diagnosed with severe pre eclampsia at 23 weeks :(
Babies born by emergency c-section at 24 weeks on 30th August 2013, One beautiful little angel passed away shortly after birth. Sleep tight sweetheart x :heart:
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Thursday, August 11th 2011, 6:11pm

Hi Ros,

I wish I could help more - I don't have any experience with immune stuff really.

I think the choice of whether to have immune testing is such a personal thing and up to the couple involved. It can be so expensive but then if something 'is' found and is preventing your BFP then it would be worth every penny. If nothing is found, it is a huge amount to pay to be told nothing is wrong and doesn't get you any further. It is a big dilemma. I know that Mistykins went to Wales somewhere at got Level 1 and 2 bloods done for £1600 I think she said. Depending on which clinic you choose to use, they may accept those results to prescribe the correct medication. I do know that some clinics don't work this way and insist they do the blood tests themselves and refuse to use results from anywhere else.....very annoying.

Have you spoken with your GP - I had the Level 1 blood tests done when I couldn't conceive, mainly because I have low plateletts and they decided to investigate further but it might be worth a short and may save you some money. Some GPs are really helpful and do them almost without having to ask, others refuse on the basis that they are quite expensive. I think our Consultant at the fertility clinic told us they are around £600 on their own....

Anyway, I hope someone comes along soon to help more than I can!

hx
3 X ICSI
Jessica Mae Duffety born sleeping on 9 January 2011 (21+2) - TS and HLHS
Holly and Elliot Duffety born on 16 October 2011 (25+6)
Natural Surprise - Matthew Evan Duffety born sleeping on 11 October 2013 (15+5)

Rii

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Friday, August 12th 2011, 10:48am

Hi Ros,

I was in your shoes a year ago, and after two BFN i decided to investigate immune issues. I had 3 embryos put back each time and they always told me they looked perfect but each time got a BFN. I agree with Hayley. It is a personal choice. Talk to your DH and see how he feels. My DH thought i was thinking too much but he agreed to support me. I just had a "gut" feeling something was wrong.

Dr. Gorgy is willing to do the tests and then work with another clinic if you don't want to cycle with him. He will tell you what immune meds you need etc. It is a very expensive road to take but worth it in the end.

Good luck, and we are here if you have more questions...

xoxo
ICSI 1-April 2010 BFN
ICSI 2-July 2010 BFN
ICSI 3-January 2011 Immune Cycle- BFN (Humira, LIT, Intralipids, IVIG, Clexane, Progesterone & Steroids)
ICSI 4- April 2011 Immune Cycle - Blessed with a :BFP:


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Friday, August 12th 2011, 12:15pm

I agree with the girls the immunology testing is a very personal and extremely financial thing to consider. If you feel you would like to have the full picture so to speak before you go any further with another cycle then I would say go for it.
I personally have had 2 failed cycles and choose not to go any further until I knew if anything else was going on. So glad I did as there have come back with a few issues that would most certainly stop implantation. I am now having round now 3 in couple months with full immunology drugs and if god forbid it did fail I would know I had done everything pos to give that little embryo a chance.
Don't rush into anything think every option through and do what is best for you both personally and finically Hun xxxxx good luck


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Round no.4 FET March 2012


rb76

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Friday, August 12th 2011, 2:57pm

Thanks so much for your advice ladies. This is such an important decision and so difficult to make! On one hand, I think that I would be so cross if we didn't have the tests but got a BFN again, but on the other neither of our first two cycles were 'textbook' so to speak and in trying ICSI we would be hopefully raising our chances that way. I know lots of ladies have been third time lucky but then again, we are unexplained so does that make immune issues more likely... and round and round I go!!

What I will say is that purely on a financial and practical level it would take us a while to save up for the immune tests and cycle so it would probably be 12 months before we could try again, but we could probably do an ICSI cycle later this year. I am massively daunted by the immune tests/bloods as well, but then I have survived 2 cycles I suppose so would manage somehow!

I think we will discuss it at our review meeting and go from there - but they tell you so little, don't they. It's all 'could be' this and that, and all about how they can't guarantee anything...

Either way thanks for the input as it helps with our decision making process

Me - 36 DH - 48. TTC since 2008
March/April 2013 Immune DE ICSI Gennet, Prague :BFP: [zx076] [zx076] :girl: :girl:
Diagnosed with severe pre eclampsia at 23 weeks :(
Babies born by emergency c-section at 24 weeks on 30th August 2013, One beautiful little angel passed away shortly after birth. Sleep tight sweetheart x :heart:
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Friday, August 12th 2011, 6:05pm

The girls have all answered so well on here, but I didn't want to read and run. The whole immune testing side of things is such a personal decision and one that only you and your DH can make. Bear in mind that the immune side of things is not scientifically proven and can be a minefield and pretty stressful. We knew this and did the level 2 tests after 2 failed cycles - plus I have a thyroid condition called hashimotos which can indicate an auto-immune disease. Other ways we, too were unexplained. If we had been living in the UK we would probably have taken the route a bit slower and had the level 1 tests done first. We didn't want to leave any stone unturned.

My results were pretty bad with very high natural killer cell being present, probably due to thyroid antibodies, but because of our situation living abroad and our clinic being totally against the whole thing we decided to try a cycle without immune treatment before going private or giving up my job and coming to London for immune treatment. On our 4th cycle with no immune drugs (only extra progesterone was linked to immune cycle) I got pregnant and am about to drop!

I do still believe in the whole immune side of things totally as I have seen close friends on here after numerous cycles get pregnant (Rii for one!), but I think my circumstances prove that maybe sometimes these things are a case of possibly working that time anyway. We will never know. IVF can sadly be a numbers game and so many things need to be spot on to make a little miracle, but I am sure that you will get there one day and whatever decision you and your DH make regarding immune testing will be right just for you. Wishing you all the best xxx

Amy

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Monday, August 15th 2011, 9:06pm

Hi Ros, we're also in the frustrating unexplained category, we've just got our immune blood results this week & its shown quite a few problems that are probably the reason for our two failed cycles & why I've never ever been pregnant. Like you said its such a difficult decision to make its such a lottery & you can't be sure if the bloods will show anything but we decided to take the plunge because I couldn't face putting my body through another full cycle, as both previous cycles we didn't get any embryos frozen we only got 1 embie out of 10 eggs, so we had ICSI the 2nd time but only got 2 embies out of 7 eggs. It is very expensive approx £2000 for all the immune bloods, but most people that have had them done are very glad they did, have a chat with your Dr & see what their view on it is. Have you read Dr Beer's book is your body baby friendly? This is what made my mind up to have the immune testing. Hope this helps take care xxxx
AMY:dog:

TTC 4yrs

Me 26yrs, Dh 29yrs

Unexplained fertility

2x Clomid cycles

1st IVF June 2010 BFN

2nd ICSI Feb 2011 BFN

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Monday, August 15th 2011, 9:25pm

Hi

My DH and I decided to have immune tests done after many years of ttc and 5 failed cycles. We were extremely fortunate to live in an area that for s short while did up to 5 transfers on the NHS. We made the decision to have immune tests done and it gave us so many answers! It is expensive. It was around £2k for the tests and then due to all of the problems found I am on a lot more meds which is obviously more expensive.

2 failed cycles is still quite early on, but I know when we had our second failure wanted tests done but decided to finish off our NHS goes.

I should add that some of the things they found wrong with me put me at risk of not only miscarriage but also late term loss dangerous not only for baby but me too. So it turns out if I had become pregnant earlier it could have been really risky.

As the girls have said, it is a really difficult decision to make. We were in the unexplained category and the clinic just kept saying "bad luck try again" - it turns out this was far from the truth! To us it was a huge relief to get the results and to have a bit of an explanation.

Good luck.
6 cycles all BFN.
One last immune cycle - July 2011
06/12 - :girl:

Baby Isobel arrived on 16/04. Life is complete :hugs:

rb76

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Tuesday, August 16th 2011, 9:52am

Thanks for your advice Amy and Devchick. I agree, being unexplained is a factor to consider in itself. Quite separately to the 2 BFNs we have been TTC for almost three years now, with OPKs, the lot - I know when I ovulate to the second almost now, but not a glimmer of a BFP. Starting to think that these immune tests might be the way forward, so that we can throw everything at Round 3 - the idea of doing it all after another failed cycle makes me feel a bit faint!

I have a GP appointment booked for Thursday but he tends to know very little about fertility, beyond the basic checks we had done some time ago. He is very supportive though so I hope to persuade him to let us have some of the Level 1 tests done. Can anyone recommend a link which gives a comprehensive list of these so I can show them to him?

Thanks again :)

Me - 36 DH - 48. TTC since 2008
March/April 2013 Immune DE ICSI Gennet, Prague :BFP: [zx076] [zx076] :girl: :girl:
Diagnosed with severe pre eclampsia at 23 weeks :(
Babies born by emergency c-section at 24 weeks on 30th August 2013, One beautiful little angel passed away shortly after birth. Sleep tight sweetheart x :heart:
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This post has been edited 1 times, last edit by "rb76" (Aug 16th 2011, 9:53am)


chatterbox

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Wednesday, August 17th 2011, 11:23am

Here's a link hun, also if you go up a level from the link you'll find a whole lot more info on various tests.

INFO: A ROUGH GUIDE TO IMMUNOLOGY Some of the tests are level 2 but towards the bottom of the list are the level 1 tests.

Also in summary:

. Thyroid panel (TSH, free-T3, free T4 and antithyroid antibodies) – to test for under/over active thyroid and to test for the presence of antithyroid antibodies (untreated antithyroid antibodies or untreated under/over active thyroid have been shown to significantly reduce the chance of pregnancy/IVF success).
• Insulin resistance (ideally the glucose tolerance test (GTT) -
• Thrombophilia panel (ideally including Factor V Leiden, MTHFR, PAI-1 and Prothrobin factor II)
. Antiphospholipid panel (including anticardioplipin IgG and IgA) – to test for ‘sticky blood’
• FBC and liver function tests (basic check on your overall health)
• Lupus and Rheumatoid arthritis panel (including anti nuclear antibodies ANA)
. Anticardiolipin antibodies (IgG and IgM)
. You could also ask for karyotyping on both you and your DH.

Level 1 tests may indicate that you have problems e.g., with your thyroid, with insulin resistance, with ‘sticky blood’ or that you are at higher risk of having autoimmune issues, but they don’t really give you much indication of what you might find on your level 2 (Chicago tests). i.e. all my level 1 were normal it was the level 2 that gave us the answers.

xxxx

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

mim

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Wednesday, August 17th 2011, 11:53am

Hi Ros

just a quick one , personally i would , I have a successful first ivf because I believe with the right tests ,to which my ivf clinic was very unwelcome about , i insisted I have done , I have had many illnesses in the past so it kept me thinking what else is wrong , I did sleepless nights of research and remember going to the doctor and saying it is not only my pcos , i was certain I got insulin resistance so I was also quite sure i have lupus and it turned out to be correct , so to me this is vital ,I am just going to repeat the level 1 test here
1. Full blood count, liver function tests, Urea and Electrolytes done by gp
2. Thyroid function tests (both free T4 and TSH) THIS ONE CAN BE DONE BY GP
3. Immunoglobulin panel (IgG, IgA and IgM) THIS ONE GP
4. Autoimmune antibodies (must include anti-nuclear antibodies, THIS ONE GP
thyroid peroxidase and anti-mitochondrial antibodies)
5. Anticardiolipin antibodies (both IgC and IgM) THIS ONE IS TRICKY TO BE DONE BY GP AS YOU HAVE TO HAVE 3MC BUT THEY MAY SAY YES
6. Thrombophilia (must include lupus anticoagualant, Factor V Leiden THIS ONE ALSO CAN BE DONE BY GP
and Panthrombin gene mutation)
the karyotyping will not be done by a gp ,it is not something they do.

when you go to your gp give them the list done tell them immune 1 they are not very clued up on this ,and the other thing some ivf clinics dont do the testing ,like mine they said it was nonsense espec.because they will only consider after 3-4 failed ivfs,to which I think is silly as I neither have the money neither the energy to put my body throught this not knowing whats wrong

hope this helps ;)
TTC#1SINCE2003
Me34Pco&Pcos1996
DH39varicocele opp06
CLOMID05,6mts09
lapdye,ov.drill2oct 09,too many treatments to mention
Shock natural:BFP:My miracle baby Sam Corey lost 17/01/11 4.30
Lupus,antiRO&arth

IVF JULY/AUG 11 immune / severe OHSS but :BFP: [zx076]saw every week ,BORN WITH SPECIAL HEART April 12



This post has been edited 1 times, last edit by "mim" (Aug 17th 2011, 11:56am)


rb76

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Wednesday, August 17th 2011, 4:48pm

Hi Chatterbox and Mim
Thanks so much for this information, I feel very well armed for my GP visit tomorrow!

I really appreciate you taking the time to list the Level 1 tests for me.

I will report back with how it goes.

Me - 36 DH - 48. TTC since 2008
March/April 2013 Immune DE ICSI Gennet, Prague :BFP: [zx076] [zx076] :girl: :girl:
Diagnosed with severe pre eclampsia at 23 weeks :(
Babies born by emergency c-section at 24 weeks on 30th August 2013, One beautiful little angel passed away shortly after birth. Sleep tight sweetheart x :heart:
My Diary

rb76

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  • "rb76" started this thread
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Thursday, August 18th 2011, 4:15pm

Just a report back on this, have seen the GP and am booked in to have the majority of the tests you listed for me ladies.. he couldn't do the karyotyping (thought I'd ask just in case) or the thrombophilia panel but am having the rest done so I consider that a victory! Am guessing CARE can do those for us.
Thanks so much for your help :)

Me - 36 DH - 48. TTC since 2008
March/April 2013 Immune DE ICSI Gennet, Prague :BFP: [zx076] [zx076] :girl: :girl:
Diagnosed with severe pre eclampsia at 23 weeks :(
Babies born by emergency c-section at 24 weeks on 30th August 2013, One beautiful little angel passed away shortly after birth. Sleep tight sweetheart x :heart:
My Diary

mim

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Thursday, August 18th 2011, 6:00pm

This is great ros,karyotyping no gp can do but why cant he do the thrombophilia,mine had no issue with it,but possibly because i had symptoms.but you have done superb,cant wait to hear the results.hugs;-)
TTC#1SINCE2003
Me34Pco&Pcos1996
DH39varicocele opp06
CLOMID05,6mts09
lapdye,ov.drill2oct 09,too many treatments to mention
Shock natural:BFP:My miracle baby Sam Corey lost 17/01/11 4.30
Lupus,antiRO&arth

IVF JULY/AUG 11 immune / severe OHSS but :BFP: [zx076]saw every week ,BORN WITH SPECIAL HEART April 12




rb76

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Thursday, August 18th 2011, 6:15pm

He said we would need to go to our local hospital for the thrompobhilia stuff Mim which is a bit if a hassle for us for various reasons.. Depending on how much it costs privately we could always ask again later I guess? But yes very pleased to be having the rest done

Me - 36 DH - 48. TTC since 2008
March/April 2013 Immune DE ICSI Gennet, Prague :BFP: [zx076] [zx076] :girl: :girl:
Diagnosed with severe pre eclampsia at 23 weeks :(
Babies born by emergency c-section at 24 weeks on 30th August 2013, One beautiful little angel passed away shortly after birth. Sleep tight sweetheart x :heart:
My Diary




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