Recurrent miscarriage - any advice greatly received

[Rollycat]

I’m looking for any advice or experience regarding recurrent miscarriage investigation, especially where endo or thyroid conditions are involved.

I went to EPAS yesterday at Wishaw general for a scan at 8 weeks pregnant, to be told I am measuring 6 weeks and there’s no heartbeat. I need go back in a week for confirmation but I’m completely sure of my dates so I’m not holding out any hope. This is my third MMC (one in 2018, two this year) With each, development seemed to stop at 6 - 8 weeks. No successful pregnancies. I was due to have ivf this year as I have suspected endo on the left ovary (although the sonographer said she couldn’t see that yesterday). I’ve not had a laparoscopy in case it decreased ovarian reserve (I’m 40).

It seems my problem has shifted somewhat from difficulty getting pregnant to difficult staying pregnant. My sonographer yesterday was great and talking proactively about referring me for recurrent miscarriage investigation, saying they had a good specialist at Wishaw.

I feel as though as though I’ve had to do a lot of pushing with the NHS to get to this point, asking for thyroid and vit D checks. I’m now on 50 mcg levothyroxine but GP has been reluctant to increase it in pregnancy. I found out on Friday my TSH was 4.01 but my GP refused to increase my dose. Was waiting for a second opinion but it obviously because irrelevant yesterday. I don’t think my thyroid issues are entirely to blame though because in my second pregnancy TSH was 1.75 at the start and 2.3 at the time of the miscarriage.

Given my age, I could go private if it was going to save time but not sure who or where. Endocrinologist? Recurrent miscarriage specialist? Gynaecologist about the endo? I’m aware that I may not get any answers from investigations, but I just feel I need a plan to help me cope. Any advice or experiences, particularly relating to treatment in the central belt/west of Scotland, would be much appreciated. Thanks!

Hi @Rollycat I'm very sorry you're going through this. I've had 3 missed miscarriages and one very early / chemical loss. I've had the nhs recurrent tests - sticky blood, lupus anticoagulant etc and they found nothing. I've actually had 2 of my losses under their care but they've offered no treatment and just said to try again.

We've decided to look at immune testing, I had the nk cells biopsy and that found nothing, but I tried progesterone (cyclogest) in my last pregnancy and had a bleed. I'm now seeing Dr Shehata down in Epsom - waiting for my blood test results.
I've definitely found the nhs has been quite slow and apply a one size fits all approach rather than individualised care - I don't believe my losses are bad luck and as they haven't found anything, the advice is just keep going and hopefully one will stick, but with no rationale for that. I don't think we can try again without a plan in place. It almost felt like the nhs professionals we have seen have essentially shrugged their shoulders and said we don't know why.

There is a good, supportive and informative thread on here that you should look at - all of us have had multiple losses and quite a few are seeing Dr Shehata now (not all). He is expensive and we have to travel about 3 hours each way to see him. We were saving for ivf (I actually conceived after my nhs baseline scan this time round - medical management in October) so we figured that we'd use the money to see him. We also struggled to conceive - 16 months before we caught (and started on the infertilty pathway), then the other pregnancies have been within 2-3 cycles of ttc.

I'll link to the other thread. Lots of love ❤️ xx

www.mumsnet.com/Talk/miscarriage/4048097-Immune-NK-Issues-aka-Pred-Thread-no-26 x

Thanks so much @VenusStarr and sorry to read of everything you’ve been going through. Will have a good read through of that thread later tonight x

Look into Profs Siobhan Quenby and Jan Brosens. They run a recurrent miscarriage clinic in Coventry to which you can self-refer. It costs about £400. I did this six years ago and had a sticky pregnancy (now school-aged child) after five MCs.

Thank you @Rollycat. I did go to see the implantation clinic with professor Brosens too, but my results were normal. He believed it was my lining that was causing the miscarriages and suggested I try steroids next time, but said he wasn't able to prescribe them for me. And because I have no identified clinical need for it, I wasn't sure how to get them. He did say if I got pregnant again we could discuss it, but it felt like I was playing Russian roulette and my babies stop growing between 5/6 weeks (but I don't physically miscarry until 9 weeks - my 3 mmcs have been almost the same). The specialist I'm now seeing focuses on pre conception so when I am able to start ttc again, I feel a bit more secure as I'll be under a specialist and following a plan.

I'm pleased to hear the implantation clinic could help you @ifigroup xx

Thank you both of you

I get what you mean @VenusStarr about feeling like you can’t just keep on trying without a plan in place. It’s so hard having to pick yourself up and try again each time.

Just having a look at Profs Quenby and Brosens @ifigoup Do you remember how many visits you had to make to the clinic? Just having a think about how far it’s feasible for me to travel. There don’t seem to be any private recurrent miscarriage clinics in Scotland.

I myself only went once. I was lucky and got pregnant on the second cycle after my visit (where I’d had my endometrial scratch etc.) - I don’t honestly know when they see you again if it doesn’t work as soon as that. The money I paid covered the visit, in-person procedures, and a follow-up phone consultation. Once I got pregnant, and once I had had my medication prescribed (which my GP had to do as the Coventry clinic can’t send out prescriptions by post), my care was transferred to my local hospital consultant.

Thanks @ifigoup that’s helpful to know. Glad it worked out so quickly for you!