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Immune testing

(19 Posts)
Annabellaboo Mon 16-May-16 14:08:59

I'm hoping if someone reads this maybe you can answer a couple questions for me about immunology testing. Long story short I can't conceive a 2nd child after more than 2 years of trying (1st was easy). All regular NHS tests and scans are fine and I have done everything I can through diet, supplements and alternative therapies to improve chances. Never had a bfp despite all efforts being made. I am looking into the possibility of me having immune issues and am currently seeking info on testing. I need to know roughly how much tests will set me back? We are not too flush with extra money so it's a bit scary to think about spending £1000's on tests. We prob couldn't afford IVF at all and don't want to go down that route anyway. Am I right that depending on the type of immune issue the treatments involved is not always necessary to have IVF? Any experience and info would be much appreciated-
It's such a minefield!

bananafish81 Mon 16-May-16 15:31:30

You don't need to have IVF, I have two friends who fall pregnant v easily but had trouble staying pregnant (both had 3 miscarriages in the space of 12 months)

They had immunes testing and treatment before TTC naturally and both are now in their second trimester.

bananafish81 Mon 16-May-16 15:33:59

However these people both conceive very easily

It's staying pregnant that's the issue

You could have the immunes testing, but I'd have ruled out all other causes of infertility first

Eg have you had a laporoscopy / hysteroscopy, day 3 bloods, full SA, HSG etc

cheapredwine Mon 16-May-16 15:41:13

If you do the Chicago tests - not the only option, but basically there are only a few labs globally which do immune testing for fertility - then the initial full assay is just over £1000 but drugs, drips, blood retests etc make the whole thing horribly expensive if you do need treatment. It's unusual but not unheard of to have immune trearment without IVF and the main London person who does this is Gorgy. However, he's expensive. ARGC will also do immune treatment for a natural BFP but think it tends to be patients who they've treated previously? (not sure on that though).

I don't have any experience of her myself, but your best bet to spend less is to try to get a referral to Prof Quenby in Coventry, whether she treats on the NHS, I don't know though.

Immune treatment is generally controversial, unproven and pricey unfortunately ( (and is at least comparable to costs of IVF, though actually much higher in my experience) Do you have any underlying autoimmune problems? I am guessing you'll have tried gluten free, reservatrol, very high omega 3? Do you get colds when other family members do? Fertility Friends forum is an excellent resource for immune issues though possibly a bit overwhelming at first. But I'd definitely recommend you have a look on there.

bananafish81 Mon 16-May-16 15:46:03

I had immunes testing done with Locus Medicus in Athens (identical to the Chicago tests, they just use intralipids instead of IVIG for the NK cells cytotoxicity assay) for under £500

Prof Quenby believes uterine nk cells are more important to fertility and miscarriage than peripheral blood nk cells - so as a uterine biopsy with her clinic is much cheaper, that might be a useful place to start

The Locus Medicus testing still requires a Dr to prescribe immunes and manage tx

I had the testing done for my own peace of mind after a recent miscarriage - my Dr is happy to prescribe empirically, so the testing was in some ways irrelevant

cheapredwine Mon 16-May-16 16:09:36

OP I think banana has a really good option there using the Athens lab, that's super reasonable price-wise

bananafish81 Mon 16-May-16 16:18:23

BTW here's a write up I posted on FF about getting the immunes tests done with the Athens lab

They might give you an indication as to whether you're likely to have any immunes issues and therefore whether to see an immunes specialist or not (although as has already been pointed out, this can be more expensive than IVF)

Annabellaboo Mon 16-May-16 21:13:38

Thank you so much ladies for all your advice and info. I will definitely look into all of this. Yes I have had all those tests done apart from a laparoscopy which is happening in a few weeks. If that shows nothing relevant I will be going down the immunology testing route. And yes I have gone gluten free for about 4 months now as well as eating all the right things and taking a mountain of appropriate supplements, hoping so much it will be enough to produce a little miracle.
I recently started seeing a homeopath who has helped with my emotions if nothing else! It's not knowing why I can't get pregnant again that is the impossibly hard part to live with. I need answers.

Annabellaboo Thu 19-May-16 14:26:32

Bananafish -do you know much about the serum clinic in Athens? It keeps coming up with great reviews in all my research and they also seem to do all the immune testing. Just wondering if there is a good reason you went with locus and not serum? I am seriously considering the Athens route due to the massive price difference and great comments I have found.
Thank you.

bananafish81 Thu 19-May-16 14:37:02

Serum are terrific - loads of women on Fertility Friends go there and have only ever heard great things about them

Locus Medicus are the lab Serum use for all their testing

Locus Medicus are a laboratory and Serum are a clinic

I didn't need treatment as I already have a fertility consultant in the UK. He will prescribe empirically for immunes anyway but I wanted to get the tests done for my own peace of mind, to understand if there were any major red flags that could have been the root cause of the miscarriage. I wasn't going to spend thousands on the Chicagos but for £300 the Locus Medicus tests were very reasonable

BTW I didn't travel to Athens - I just sent my blood specimens to the lab

Annabellaboo Fri 20-May-16 09:38:25

Ah thanks that makes sense now.
Have you had any success yet?!
I don't have a private consultant here, I am still with the NHS but am reaching the end of the road there. After my laparoscopy I think I will be signed off and that's fine with me as they can't really do anymore.
I think I will be contacting serum and look at going out there for a consultation and testing at least. It's something I now feel I have to do and it feels right going there for a few reasons (mostly financial) even if logistically a little tricky.

bananafish81 Fri 20-May-16 12:46:31

Good luck with Serum - I only read positive things about them on FF!

Success wise I got pregnant from my second IVF cycle in Jan, sadly miscarried in Mar at 10w. Tissue testing showed the baby was chromosomally normal but immunes testing also showed no major red flags immunes wise. Very slightly elevated NK cells but only very minor - but we will be treating with immunes when we do our next transfer for belt and braces

I'm currently doing another fresh IVF cycle and we're planning on doing genetic testing - this requires us to freeze the embryos, so not putting anything back immediately. Hopefully doing a FET (if we get a normal blast!) next month when we will be adding in immunes tx to the protocol (prednisolone, intralipids, clexane, aspirin and extra progesterone)

Annabellaboo Sat 21-May-16 22:09:28

Thank you bananafish. I really hope you have some good news soon, sounds like you are definitely due it!

TapDancingPimp Mon 23-May-16 07:32:04

Hi, sorry to hijack but this is something that's been worrying me constantly over the past few weeks...

I'm about to embark on cycle two after my first cycle ended in very early miscarriage/chemical.

I'm an endo sufferer (post-lap) and have read about the links between endo and immune problems.

My question is, would there be any signs/symptoms of an immune disorder before I start thinking about having it tested? I'm very wary of 'wasting' another cycle before having this looked at properly in some form.

Annabellaboo Mon 23-May-16 11:05:59

Hi tapdancing- I found these fairly basic symptoms in an article that is helpful. Also, if you really want to look into it more read Dr Beers book 'is my body baby friendly'. It's very detailed and enlightening.
Good luck!

TapDancingPimp Mon 23-May-16 19:10:14

Thanks Annabella.

I've been reading about these tests obsessively all day at it seems to be the case that they're only offered/recommended after recurrent failures or miscarriages.

I really don't want to waste thousands knowing there's a potential problem, nor do I want to experience another loss sad

bananafish81 Mon 23-May-16 19:28:04

My Dr prescribes empirically for implantation failure or miscarriage - I had the testing for my own peace of mind to understand if there were any major immunes issues that were likely the root cause of the miscarriage, but we'd treat for immunes anyway, for belt and braces

Hugs tap - think we were on a cycle buddies thread flowers

Annabellaboo Thu 26-May-16 15:33:16

Tapdancing- I thought the same as most research points to miscarriages. However looking into it further and reading dr beers book, I still feel it's a plausible explanation for me. There are immune disorders that prevent implantation. I will getting my tests in Athens as it will be a huge saving. Good luck to you.

Deux Thu 26-May-16 16:16:25

What about your DH/DP. What do his semen analyses show? Morphology etc, DNA fragmentation.

It might be an idea to have a consultation at a top fertility clinic before you go any further. It will cost you a few hundred but ime it's money well spent.

I had prednisolone, ivig, aspirin, PGS on my last ICSI cycle and conceived DD.

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