4th loss what next?

[Mancbear88]

I’ve just had my 4th first trimester loss, two after seeing the heartbeat and two before.

I’m under the recurrent miscarriage clinic at St Mary’s. I’ve had the routine NHS miscarriage tests and a hysteroscopy, which have shown nothing. I’ve never seen a doctor yet so they have arranged a phone appointment with the consultant.

Has anyone got any advice on questions I should I ask?
So far my questions are - what are the routine NHS tests? And are there any additional test?

We’re happy to pay privately for more tests if needed but not sure how to go about this. I know there’s a chance they wouldn’t show anything but would like to rule out anything I can. I’ve read about NK cells and karotype/balanced translocation but again not sure how to go about arranging testing.

I’m just feeling a little lost and overwhelmed with the next steps. Any advice would be really appreciated. I’m already on progesterone and I’ve had aspirin.

Could you try Professor Quenby's clinic at Coventry? I had 4 losses in a row, all missed miscarriages so required surgery and had all the NHS tests which didn't show any issues so we were told "just bad luck". It was about 8 years ago now but it cost about £300/£400 to go to Prof Quenby for uNK tests. These were also clear but she was so reassuring that we would work it out and put me on a plan with progesterone and clexane should I get pregnant again (my own NHS doctor gave me these prescriptions so free). First time trying this and we had DS1. I also did the same a few years later and had DS2 with no further losses.

I also went for acupuncture (I spent time researching for someone that specialised in miscarriages and fertility) and would highly recommend that too. I went from a 35 day cycle to 28 days which improved the quality of my eggs apparently.

Good luck and I hope you find something that works for you.

Karyotype should be on NHS in these circumstances.

I'm sorry for your losses

We had a number of issues and miscarriages. We were directed to Mr Shehata by a friend with similar issues.

www.crpclinic.co.uk/

I truly believe we have him to tank for our children.

Good luck x

I'm sorry for your losses @Mancbear88 I recognise your name ❤️

NHS standard tests for recurrent losses are lupus anticoagulant, antiphospholipid syndrome and thyroid. I did manage to get the NHS to do the karyotyping test for my dh and I. They usually do them after 5 losses but they did it for us after my 4th.

All my NHS tests came back normal, so I had no additional medication, no progesterone or aspirin. I went to the implantation clinic in Coventry and had the nk cells biopsy (just before covid). First was normal so I was given progesterone and I lost my 4th baby, tested as a healthy boy. I have since had another biopsy with them and it was abnormally low, so they have prescribed me sitagliptin to regenerate my stem cells.

We went to Dr Shehata as mentioned above after my 4th loss. He diagnosed overactive nk cells and very low vitamin D. Sadly we struggled to conceive after I had my medication plan (full, complex plan with steroids). So we started ivf but I've lost 2 more pregnancies, my recent one was a healthy girl and we'd seen her heartbeat. So we still haven't had success. I do think we are a very complex case and most people I have met / spoken with who have a similar diagnosis to me have had a baby now.

I did feel let down by the nhs and was told we were likely losing chromosomally abnormal babies so just keep going, but we've had 2 tested now and both were healthy. Dr Shehata believes that only 2-3% of recurrent losses are due to chromosomal issues and about 60-80% are immune factors.

I really hope you can get some answers xx

@AndrewPeacock thank you. I did have acupuncture with loss one but it wasn’t a fertility expert, so probably worth another go. I’ve found one near me and sent them a message will see what they say.

Did you self refer to professor Quenby? I think NK Cells would be a good next step.

@flipflopjump that would be great if the NHS would fund it, or even just point us in the right direction. It’s all very confusing!

@ooooopsididit thank you for the link, very helpful information on there, and it’s great to get an idea of costs too. I will get in touch with him after my NHS appointment. From research it seems people either go for him or Professor Quenby and the tests are slightly different.

Yes, we self referred. I was on the miscarriage association forum which I found very helpful and did a lot of research aided by others that were further down the line. From memory, I emailed the clinic and was given a bit more info including when to book in based on my cycle and then it was a case of driving down for the appointment. We then had a phone call for the results.

I am sorry for your losses x

There are a lot of tests and things you can do, but firstly you need to find a doctor, your doctor! You've been through so much pain, and I wouldn't want for you to have more things to stress about. Spend time to search what you want on a doctor /clinic, and then together you will figure out all the tests and exams or procedures you need to do.

Love and prayers to you x

PS If you want to have a chat, or ask anything pm

Sympathies. After my third I wept and was bluntly told at the hospital I don't know why you're upset, some people have 10. So understanding of despair and loss
How early are you starting the progesterone? My third miscarriage I had started progesterone injections at 10 weeks but I went on to have 3 successful pregnancies afterwards but started the progesterone from 5 weeks. Hang in there xx

@VenusStarr so sorry, your story is so sad. Do you know if all your foetuses were the same sex? Just wondering whether this has been proven to be a factor in recurrent miscarriages. My own three children are all girls.

@AndrewPeacock I’ll have a look at that forum too. And after my NHS appointment I’ll email the clinic to speak to them.

@IsabelHerna thank you. I think seeing a doctor would be a start it’s been hard to get anything. We’ve now got a telephone appointment with Dr Lamiya Mohiyiddeen who I believe is one of the specialist or at least her team. Someone listening is a start! If I don’t get what I need from that I’ll keep looking.

@Needdoughnuts how heartless was that I think I’d have complained to PALs if they’d said that to me. I’m on progesterone right from the start, but wondering if I need more. I tend to have a bit of bleeding at 5ish weeks then miscarry a bit later. So maybe injections instead or as well as pessaries could be one to look into!

Thank you @Needdoughnuts ❤️ we have lost a healthy boy and a healthy girl (we have only tested 2). Four of my losses have been carbon copies of each other, week 6 is the week it goes wrong for me, even with treatment. I was on a lot of meds for my recent loss.

@Mancbear88 I do think progesterone plays a role in some of my losses. We added in lubion injections on top of 800mg of cyclogest in my recent pregnancy and I had no bleeding and they grew perfectly. But I don't know if this would be prescribed in a natural pregnancy, mine was an ivf frozen embryo transfer.

@VenusStarr ❤️

@VenusStarr I hope you get some answers it’s so hard to keep going through it. Mine are all IVF too. 1st was a fresh cycle and the rest frozen, so I feel like I have limited chances I can’t just keep going forever. I’ve got 4 left in the freezer from my NHS cycles, then I’ll have to pay. Which I can but it’s expensive to just go through more and more losses!
Losing after a heartbeat is hard as people say you’re ‘safe’ then! My 2nd i lost the day following a good scan where I was measuring 7 weeks with a perfect heartbeat exactly on target.

It's really hard @Mancbear88 have you been offered any blood tests for lupus anticoagulant or antiphospholipid syndrome? My ivf clinic added in clexane even though I don't have any blood clotting issues. Did any of your babies get sent for testing?
My ivf clinic is suggesting pgs testing even though there's no evidence that we've lost chromosomally abnormal babies, but they admit they just don't know what else to suggest for us.

We had one fresh cycle of ivf NHS funded and got 3 embryos but only our fresh transfer was included. Our next transfer is our last embryo. Even with the nhs funding we've spent about £20k so far. You do have to wonder where it will end.

@VenusStarr all I’ve been told is I’ve had a full NHS miscarriage bloods but my first question to the doctor is going to be what is that and what’s left. Apparently they’re all fine. I took aspirin for my 2nd loss off my own back but that just resulted in the miscarriage meaning I ended up in A&E bleeding heavily! I’ve never been offered any testing of embryos or babies so not sure if they are ok.
I do get a very high percentage that make blastocysts, this cycle 100% of fertilised made it to good quality blasts which is apparently unusual. Although obviously means nothing chromosomally.

It’ll all be worth it if it works but that hard part is the not knowing, I wish they could say yes it’ll work. It’ll be a hell of a journey but will work, or no never gonna happen stop wasting your time.

That's similar for us @Mancbear88 I have low amh but 3 fertilised and all 3 made top quality blasts, one which we know was healthy.
I'm sorry you haven't been offered the option to test your babies, we were told after our third we could. I hate how there's so little support in recurrent losses, you're having to navigate through on your own.

Definitely see if you can get copies of your test results. I feel like you just get fobbed off with miscarriage is a chromosomal issue when in reality it rarely that with repeated losses.
I hope you're not waiting too long to be seen xx

@VenusStarr it does make me think it might not be chromosome as surely they all wouldn’t make it, but I don’t know the science. It is terrible the la k of support it’s just basically weve done some bloods. They’re fine keep trying! My appointment is the start of April so not too long but it will add up once I wait for tests etc!

@Mancbear88 I am glad you're taking the next step, someone listening to you is important. Taking the 1st step is the hardest thing. Good luck with everything x