Third miscarriage, 2 failed ivf cycles - testing advice?

[BKB27]

Hi, hoping for some advice?
I have just been to the ivf clinicnfor what was meant to be my 7 week scan to be told the baby didnt progress past 5 weeks. I requested another scan next week, not sure why.
This will be my second missed miscarriage, third loss overall.
I'm not sure what to do next ir what will be offered to me. Should I ask to be referred to a recurrent miscarriage clinic and if so what tests should they be doing?
Thanks in advance x

Sorry to hear about your miscarriage 💐

Most GPs won't refer you to a recurrent miscarriage clinic until you've had 3 miscarriages - often consecutively. The wait time even before covid was about 4 months so even if they did agree to do it could be months before you are seen.

To be honest the tests they run are pretty bog standard - nothing innovative at all. They'll do thyroid, blood clotting and ANAs. Then they'll pack you off with a call us when you next get a BFP and we'll see you at 6 weeks (which by then generally too late to make much of a difference). Also no scans are being done at the moment due to covid in most miscarriage clinics so they are pretty pointless to be honest

They DONT test for karyotyping, progesterone levels, sperm dna fragmentation or NK cells. They won't proscribe progesterone or clexane or aspirin as a precautionary measure.

All the tests they do will be available from your IVF clinic so depending on whether you feel you can wait several months (if you even get a referral) I'd probably pay to have them done privately?

Thats really helpful thank you. It is my third consecutive miscarriage, this one just happened to be after my second ivf cycle. If the clinic will do those tests I will request. Although what can be done about any of it im not sure x

Have you thought about PGS testing any remaining embryos? I’ve had one MMC after ivf, one miscarriage via a (totally unexpected spontaneous) pregnancy two months after the MMC and currently waiting for my seven week scan having just got a positive after my second FET. I’m dreading getting to the scan and being told bad news. So sorry for your loss x

Sorry for your losses, I hope everything goes well at your scan. I think pgs testing is what I will ask for next. Hopefully the hospital will carry it out if not on njs then privately. Dealing with pregnancy after loss is difficult as you're scared all the time.

Hiya - PGS testing isn't available on the NHS unless you have a confirmed genetic disorder. Some NHS clinics you cannot extra for it others you can't.

Just bear in mind it can damage your existing embryos if you thaw them, biopsy, refreeze and then thaw them again?

PGS was downgraded by the HFEA earlier this year as there isn't sufficient medical research to suggest it makes a difference and also it is by no means 100% accurate - they only take 5 cells out of 100 of what would be the placenta to biopsy so it's luck of the draw that the 5 they happen to pick are all abnormal or all Normal? And no guarantee that the baby cells themselves are normal?

I PGS tested one round age 36 and didn't get any normals - not allowed to transfer them legally in the U.K. so they have to be destroyed so you could lose them all? I decided not to test again abs transferred 2 from my next egg collection and am 28 weeks with twins.

For me changing protocol to improve egg quality is what made the difference for us

*can pay extra

Thats really helpful advice thank you so much. Did the consultant say there was an egg quality issue or is it something you wanted to try?

@BKB27

I'd had 5 miscarriages between 7 and 12 weeks and all other blood tests had come back ok so we felt that PGS was the last thing to try to hopefully get some answers.

Poor egg quality had already been identified from my first 2 egg collections as the fertilisation rate was rubbish even with ICSI - less than 30% fertilised on each round.

I suppose I was curious as to what the PGS results would say and hoped to get at least one normal to increase chance of success on the next transfer. And I wasn't sure if I could mentally go through another miscarriage.
But unfortunately didn't work out that way as didn't get any normals but I guess we got our answer that we just weren't making good blastocysts. I also decided if it was a choice between no transfer or risking a miscarriage with an embryo that could potentially "fix" itself then i was strong enough to go through another loss x

Hi @ivfbeenbusy Do you mind me asking what you changed in protocol to improve egg quality? I had meeting with my clinic yesterday and he said there is nothing that can be done re quality. It's just age (i'm 42) and he'd recommend another cycle same as last one and we hope for the best. Wasn't really what i wanted to hear!

My history - male factor so icsi required. 3 cycles. First: 5 embryos, only one made it to blast. BFN
Second: 5 embryos, two made it to blast. 1st was mmc but second frozen is my now one year old dd.
Changed clinical for logistical reasons. 17 embryos but only 3 made it to blast. Clinic say big drop off is due to egg quality because of my age. Double transfer resulted in singleton pregnancy but no HB at 9 week scan (had been ok at 8 weeks). Transferred final frostie and had a chemical this week. Pencilled in for another cycle in Jan but they say 15% chance of success and i'd love if something was being done to try to improve quality.

Sorry to hear about your miscarriage. I’ve had 2 at 4.5 and 5.5 weeks, second was via IVF and my clinic agreed to do blood clotting and karotyping testing on the NHS (although we decided against the latter for now). He also mentioned NK cell testing but you have to pay for that. He didn’t particularly think any of these would be beneficial but left it up to us if we wanted to do them.

@Galgal15

I changed to natural modified IVF focussing on far fewer follicles. Where on short protocol I was getting 14 but largely all rubbish on natural modified I got between 2 and 7 and the quality improved hugely (fertilisation went from 30% to 100% and went from no PGS normal to being pregnant with twins that have passed all NIPT testing)

It's basically very low dose stims with tamoxifen tablets (estrogen based and similar effect to clomid). Stims only every other day x

That is really interesting! I will discuss it with my clinic. Huge congraultions on your pregnancy. I'm sure it's very exciting to be getting ready to meet your twins! Thanks for the info.

Thank you all for your willingness to share. I have a scan tomorrow and will see what they will offer in terms of testing and whether a more natural cycle would be beneficial.

@BKB27 so sorry to hear this. I just read the thread and wanted to say that I'm having karyotyping on the nhs atm. I had to take the foetus (sorry not sure what you would prefer to call it) to the hospital and they have sent it off for karyotyping. We will get the results in January, although 50% of the time it's inconclusive. This was my third consecutive loss, and that's when they will do the extra tests. Maybe it depends on where you live, but it's definitely worth asking if this something you would like done. I think you can have 'parental' karyotyping blood tests on you and your partner if not, and you should be eligible on the nhs because this is your third. Maybe phone the hospital to see what they can offer?

I'm sorry for your losses. I've had 4 losses and would recommend the nhs anticoagulant / antiphospholipid syndrome and thyroid blood tests in the first instance. After my recent loss we were able to get parental karyotyping blood tests - all clear. I'm also waiting for the genetic report from my last baby, but that will only really give us an answer for that pregnancy. We've been told that our losses are unlikely to be due to chromosonal issues and those are generally random occursbces.

I recently had immune / nk cells blood tests and have been diagnosed with aggressive nk cells so on a treatment plan now. This is private as the nhs don't offer this.

Best wishes, it's really difficult x

Hi @Daffodil21 thanks for your response and I'm sorry for your losses. This is also my third consecutive loss but they said at the scan today that they wouldn't do anything different, wouldn't offer genetic testing on the embryos or any karotyping testing on the baby. I assume because they were 5 weeks and not big enough or they just don't offer it.
Thanks @VenusStarr I'm sorry for your losses as well. I think those tests are whats next for me. Do you mind me asking where you had the nk cells testing done?

I'm under the CRP Clinic with Dr Shehata @BKB27, they're based in Surrey, so it's a day out for me as I'm in the Midlands. I'm on a drug called hydroxychloroquine and I have to have regular intralipids. My losses are one chemical and 3 missed miscarriages but the babies all stop growing by 6 weeks but I don't miscarry until 9weeks, so I need the meds early. I'm also on daily aspirin. We struggled to conceive for a long time and the doctor feels that it the nk cells is the reason x

@VenusStarr I've been trying to book an app with them but no one's answered the phone and they haven't returned my message from Friday yet. Good job I've read such good things on here about them! Is their waiting list very long? (Also, hello again, we've spoken previously on another thread).

@BKB27 I wonder why that is?! Maybe it is a location thing. I thought it was bad enough not getting testing until 3. Seems very unfair they won't do it

Hi again @Daffodil21 persevere with calling. I had to call a few times before I got through. I think I tried about 10am one day and got through straight away.
I'm happy with the clinic and Dr S. I know someone who booked last week and has an appointment in January. They're closed for Christmas week until 4 January, so I think they're squeezing current people in which might explain the wait. The turnaround for results is super quick, 2 weeks and I'm already on my meds and in my first tww and only got my results on 18 November. X