Reproductive immunology - is there anything to it?

[ginandtonicformeplease]

We were lucky enough to get a BFP on our first cycle, but then had a MMC at 9 weeks. I just had a second cycle, but that resulted in a BFN.

We just went to see our consultant and I'm not sure of the way forward now (we still have some frosties to transfer). Due to my 'young'(!) age - 36 - and that the two embryos transferred and failed were top quality, he wants to run some tests to see if there is anything else preventing it working.

These tests are for Natural Killer cells. He was very upfront and said that there have been no large scale studies on it but his clinic and one other clinic in London believe the science behind it and so if there are no other factors then they will investigate this. These tests cost £1200 as they send the blood to Chicago.

They also want to run a test for thrombophilia. As there is a family history of strokes, it wouldn't surprise me if I have a predisposition to thrombosis.

Most of the time I'm very good and don't google, just trust what the doctor says. However, I'm on the fence about this one - as there have been no large scale studies into NK cells, and the experts themselves all disagree about the theory behind it. Part of me just thinks that we should go for another FET and hope third time lucky, the other part of me knows that I wouldn't forgive myself if we went for another FET and it was either BFN or another miscarriage.

I'm at a loss as to what to do. We've had to self-fund the entire thing, and I'm aware that there are some clinics out there who just trade on hope. In the past our doctor has told us not to bother with add-ons that he doesn't think are worth it, so I've never felt like he's been just trying to make money off us.

I had the whole shebang - the lot - tests like Chicago cost loads. What I didn’t think through was if the tests showed issues (which they did) then I’d also ‘have’ to pay for the treatment (IVIG was £1,400 a pop) then again for the same tests to see if they’d worked. Then when they hadn’t, pay for more treatment.
I had my IVF abroad and that was cheap in comparison to having that part in the UK. I had the immunology part in the UK.

All in all one round of IVF cost 22k. I had budgeted for 8k

I did get a baby at the end of it. I will never know if the immune drugs helped or if it would have been unsuccessful without them. My gut says they were essential but perhaps that’s me trying to swallow paying out all that money.

I think there are a few cheaper tests that may be worth considering as problematic results can be treated easily with steroids or clexane. I found out I was factor V Leiden positive and that I think can cause late miscarriage / still birth.

One thing you need to think about is the emotional impact of going down a heavily medicated pregnancy. Mine was particularly bad I think, and part of me still struggles with how difficult it all was (there were other unrelated problems too). I appreciate that sounds ungrateful to those who aren’t as lucky to have been successful in having a child.

Oh forgot to add - I threw everything and the kitchen sink at it because my fertility was waning at a high speed and I was the wrong end of 40. I knew statistically there was no point in going for multiple rounds. I wanted to know id done everything I could

My 2p worth - I would have the thrombophilia/auto immune tests but not the NKs and instead ask to treat the NK stuff empirically (basically pred, intrallipids and aspirin*) which I would be surprised if your clinic didn’t offer.

BUT - I think there is a clinic in Greece (serum?) that does the nk tests if you can get a sample to them for significantly cheaper too if you decide to go down that road.

• assuming there is nothing on your thromb tests - aspirin obv not appropriate if there is!

I dnt want to hijack ur thread but all of you ladies seem to know soo much! ive been ttc for over 3yrs now ive had my hormone levels checked they came back normal and thyroid in the past normal OH s SA came back normal once they check i dnt have blocked tubes they said its straight to ivf. I thought there would be more tests and investigations are there any other tests you would suggest i should ask for?

Have you been on fertility friends website? Theres a wealth of information on there. I think it depends on which clinic you go to - I suspect that some suggest certain tests and other clinics don’t.

I looked into the autoimmune stuff as I have an autoimmune disease. Otherwise I get the impression that these tests are the ‘last resort’ type tests as they’re so expensive. I really don’t know about many others (or I’ve blocked it out of my mind!) but try fertility friends.

Sorry you’ve been struggling for three years. Hoping it works out well for you in the end.

@Calming thank you soo much hun

So my GP rang me back and said that he'd made a mistake and he couldn't order tests without orders from the clinic. I supplied the name of the clinic and the dr, and also dropped the clinic an email to say we hadn't decided on whether to have the NK cells test but GP would do the thrombophilia one and others. The GP's secretary has just called me and said that they've tried to get in touch with the clinic who've refused to tell them anything and that they'd have to get the letter from me....I have no letter and no reply to my email. I feel like I'm going round in circles now. I'm absolutely sick of all the shit that comes with IVF.

It probably seems a little thing to lose it over but the bills have racked up and I almost feel like we're being pressured to spend £1200 on a blood test.

Hello gin and tonic that is how I feel too about the crappy ness of ivf, once something like that is mentioned it can’t be put back in the box and you wonder if it’s the answer to everything. For what it is worth we paid for this test following a miscarriage and failed ivf. Thought it might explain years of trying and the recent loss of a pregnancy was also a factor. They have come back negative today more tests suggested and am not sure whether we are going to carry on cycling at all. One thing to be aware of though, if you do get a positive Chicago test the clinic cannot treat the condition all it can do is offer to screen and select out the unviable embryos, a process that costs significantly more than the test. I do always consider the worst case senario and thought that the whole process could lead to all the fertilised eggs or the best ones being deselected. So be aware that they can’t treat just screen and that is more money. I produce 2/3 viable blasts so there would not have been lots of options. That said despite thinking the test results might explain a lot they are negative and I suppose I should be pleased but the whole bollocks of it all just gets to me. Followed by the thyroid test being suggested and something else which apparently can be treated with blood thinners and steroids in me if found, lovely! Frankly feel like giving up on the whole thing but have parked decisions on that tip after Christmas. Best of luck with whatever you decide to do xx

Just to throw something else into the mix - hope this is more helpful than unhelpful - having gone through the whole Chicago tests thing at ARGC I became curious about alternative views on it, and went to see the reproductive immunology research team at Coventry led by Siobhan Quenby. They take a totally different view to the Chicago people; they think what's happening in your blood doesn't relate to what's happening in your womb and (most importantly) that up till recently we have misunderstood the role of NK cells in the womb lining.

Their take on it is that NK cells don't attack the embryo, but can build up if the womb fails to shed them, and that if they do you need steroids to stop this affecting implantation. Their research suggests it's cyclical - the NK cells build up over a few months then shed, then start again. They started working on this idea having noticed that women who had a womb biopsy with them more than once often got very different results (whereas my blood NKs and cytokines have been very consistent, my two biopsies were totally different).

This is NHS peer-reviewed science and there's an evidence base that they have found a real problem and a solution for it - the evidence for the Chicago approach isn't as clear cut, which I'd expect it to be by now given how long it's been used for. If you're interested, this is the clinic's page

warwick.ac.uk/fac/sci/med/research/biomedical/tem/bru/

and the two biopsies plus two consultations with the professors leading the research is about £540.

Thanks pognut that's very interesting to see a different side of the theory. Eventually I got the letter from the consultant last Friday, but I just rang my GP and it still hasn't been processed, so no closer to the blood tests we can have done on the NHS. Ideally we wanted to get the results of these in, then we could make the final decision about the Chicago tests, but as we want to do our next round in January it looks like we'll have to make a decision about the Chicago tests before the other results come back.

I'm no closer to making a decision than when I posted my original message!

Hi OP - how did you get on in the end? I've been diagnosed with low nk killer cells after two miscarriages from natural conception. Trying for our first and now going down the ivf with PGTA testing route. I'm really concerned about having low nk killer cells. Everything I read relates to high and treated with steroids. I hope everything worked out for you xx