Unexplained recurrent miscarriage

[Ralowi]

Hi all, I am just wondering if anyone has similar experiences or advice? I have had 9 miscarriages in total now, 3 prior to my son being born in 2017 and another 6 over the past year. About half were chemical pregnancies, 2 natural (I am currently going through number 9 now) and 2 requiring surgery. I have been referred to the recurrent miscarriage clinic and they have carried out scans, blood tests and done cytogenetic testing from the last procedure and all have come back normal. My last 2 pregnancies I have been put on progesterone pessaries twice a day from confirmation of pregnancy (this for me is very early as I am keen to start them asap in case it makes a difference). I am due a hysteropalpingogram to examine my tubes and make sure they are not ‘mishapen’ as apparently this can also be a cause. Obviously they are not blocked because i am getting pregnant easily, but the pregnancies are never progressing beyond 6 weeks. I have my thyroid monitored regularly as I’m already under endocrinology for this, so I know it is not my TSH. I have a pituitary tumour for which I take cabergoline and I stop using this in pregnancy and am assured this cannot be a cause. I had an emergency c section with my son as I was not dilating fast enough, I seem to have this issue where my cervix will not dilate hence the missed miscarriages where I had no signs till early scans that anything was wrong. The hysteropalpingogram is really my last resort and even the consultant seemed to think
it was pointless and said it’s up to me if I want to try it. But I can’t do this now until I have a negative pregnancy test which could be weeks. I am starting to wonder how I ever had a child. I really didn’t want a big age gap and im
now 36 so time is not on my side and soon it might be time to give up. I’m also looking into whether IVF could work, but need to be sure there is no issue with my uterus or this could be a complete waste of money. Sorry for such a long post and appreciate if anyone has managed to get to the end!! X

Op I’m very sorry for your losses. I had multiple mmc and it ended up being an immune issue ( your body attacks the embryo as half the dna is your partners)
once I had treatment I got my baby. It often happens with a second baby as the body allows the first baby but is then primed/ triggered for subsequent pregnancies. pm me if you want more info

I'm very sorry for your losses ❤️ I have had 6 now. I do have immune issues identified as the cause but have lost 2 on full immune treatment (one was healthy, one chemical so we don't know).

Have you had a hysteroscopy? I had suspected scar tissue after my d&c in November. So that might be worth exploring, particularly as you had a c-section, there may be scarring causing issues.

But in my experience, losing healthy babies at the same point - I've had 4 MMCs when we the baby stops growing at 6+2 is it relates to immune factors. The nhs is not really up to speed on treatments though. I am seeing a private specialist now, Dr Shehata and even though I've had losses on the treatment, we're trying a different protocol. The nhs just told me to keep trying.

Lots of love x

I have similar - ten losses within 1.5 years - 8 chemicals and 2 mcs at 6 weeks. We are now doing IVF and from what that has told us, our blastocysts are not great chromosomally and most die by day 5 which suggests it is mainly egg quality issues (40 and autoimmune issues) and wee bit of sperm dna fragmentation. I have autoimmune stuff and raised NK cells so there is likely to also be an immune element. We have seen some improved results after a dismal first round by adding steroids and human growth hormone to a tweaked protocol plus diet and supplements. Still banking embryos as we get max two per round regardless of no. of eggs fertilised. We are also PGTA testing to ensure only chromosomally normal or usable mosaics are transferred to reduce mc risks. Once done I will do the endemeTRIO tests, microbiome etc and be put on immunes treatment for transfer.

Thank you both so much, I am definitely looking into the immune stuff as we speak. I’d have not even known about that if it wasn’t for this post so I’m very grateful. I naively assumed I had had all the testing I could have done under the nhs miscarriage clinic but starting to realise these may be very basic tests.

venusstarr - I have been sent for a hysteropalpingogram where dye is put through the tubes but I’m not sure what the difference is between this and a hysteroscopy. I haven’t had it yet as still going through my most recent mc. They don’t seem to think I have any scarring and midwife seemed to think this wouldn’t be causing all the miscarriages but yes the surgical procedures and c section are a worry for me. I’m glad you have said the immune treatment may not be successful first time as if this is my problem I wouldn’t want to get my hopes up too much. Are your immune issues due to nk cells? Really hope it works out for you x

Sorry Phrenologistsfinger I think I started typing my reply before you posted yours! Wow that is a lot of stuff to consider, I suppose I have to accept it may be a combination of factors. I am tempted by Ivf to give us the best possible chances but wonder if I am tested for nk cells and results are high, maybe treatment for that alone could be the solution. Also with ivf you are choosing from a selection of eggs whereas one a month is kind of pot luck!
I know I can carry a child although this was 5 years ago and that can make a big difference. It would reassure me that the best embryos were being used because I really can’t face another miscarriage knowing I could have done more. However we would have to self fund ivf and go through all the tests etc that we have already had again. It’s all so complicated. I’m glad you are now in the right place and have had all these things identified, it’s the not knowing that can be hardest sometimes x

@Ralowi I'm glad you are having some investigations. The hysteroscopy is a camera in the uterus. I've had 2, first I had a polyp removed and hoped that was an answer. I had my second at the end of April as a scan showed a potential scarring issue. I asked for a biopsy at the same time and all was clear.
I think the hsg does give good images about scarring too.

I found it a shock that I still lost on an immune protocol, I wasn't prepared for it. After my fresh ivf transfer I bled a lot, so think I had a progesterone issue. I did the endometrio tests after that and ruled out chronic endometritis and infections. I had extra progesterone on top of my immune meds ( I was on prednisolone, hydroxychloroquine, intralipid infusions, as well as aspirin, clexane, lubion and cyclogest). We saw a heartbeat but she stopped growing at exactly the same as my 4th baby. We had her tested and all was normal. My specialist doesn't feel our issues are chromosomal, it does seem to be complex immune issues sadly.
He has added a new injection called gcsf to my protocol. I've yet to try this but hoping that in addition to all my other meds helps us bring our baby home.

Meant to say, yes. I have very active nk cells in pregnancy, a normal count though. I also found that my uterine nk cells were very low which indicates poor stem cells. I also tested positive for Ana antibodies and recently found my thyroid has gone haywire despite being on levothyroxine. So had to double my dose.

Sometimes I feel like we're getting closer to answers but bringing home a baby still feels far away. But being under a specialist who is honest and can try different approaches does give me a bit of hope xx

Hi, I’ve been looking into this a lot and my head is scrambled! Seems to be so many different concoctions of medications and if there is a successful outcome nobody knows which worked. But the main one seems to be the prednisone. The worry I have about that is I have an under active thyroid and pituitary tumour both of which it says not to take alongside (or that if I do I would have to carry some kind of steroid card). I also suffer from insomnia and this is another side effect along with weight gain. I know I am jumping the gun here having not actually had the tests but how long do you need to take the prednisone for? Another factor I would need to look at is whether using this alongside ivf would be the best option, otherwise if it results in another miscarriage how will I know if it is the treatment that failed or it was just a rubbish embryo?! Thanks everyone for all your help so far, it’s very interesting stuff and there’s definitely something in it even if it is still classed as experimental x

Ah I see. I don’t think the test they do at Coventry looks at how active the cells are, I never thought about that. Its amazing that all these tests are available now and can give us answers. My thyroid fluctuates a fair bit too and I did believe that was the cause of some of my
miscarriages but having made sure it’s under 2.5 in subsequent pregnancies I’m now wondering if it was immune issues all along. Although how my son slipped through the net I’ll never know. It’s a really tough decision whether we want to continue trying tbh. If only we could be told that at some point in future it would happen that would be enough to keep us going! X

Sorry Venusstarr last post was meant to be a reply to you but doesn’t seem to have worked!

It is a bit of a minefield @Ralowi

I did initially do the biopsy at Coventry, under professor Brosens. My first was normal, so I had progesterone. But bled on that and the baby was tested as healthy. That's when we went private as there was no explanation. You're right about the activity of the nk cells. Mine are exceptionally active in pregnancy, I don't know anyone who had higher than me. Which is why I'm on such a concoction of meds.

Just before my fresh ivf cycle, I went back for the second biopsy - naively I just wanted it to act as a scratch, never thought it would come back with anything. But my levels were very low. I have since tried sitagliptin but this is the first time we've ttc since I finished the course and my lining has been quite poor, so don't think it's helped to be honest. But it does highlight that the uterine biopsy is questionable (to me) on how valid it it?

I have put on weight since doing prednisolone and intralipids. Which is hard. If I get pregnant and it continues, I'd have weaned off the pred and intralipids by 16 weeks. After 4 weeks on pred you're immonosuppressed, so I do take it easy on social contact, but not totally isolated. I actually think my nk cells have stopped me getting covid. I am never sick or ill. I'm on levothyroxine but I'm not sure about the interaction between steroids and your pituitary gland. One thing that has resonated with me is I listened to a podcast with Dr Shehata, my doctor and he said often people are prescribed steroids but with no understanding of dose or why someone might need it. I also have to have my bloods monitored regularly for liver function etc. I'll see if I can find the podcast for you. He explains about the activity vs number of nk cells too.

It's hard to know - my first ivf transfer was a 5aa, but I bled heavily from 7dp5dt. Then tested positive from 9dp5dt for a week. Dr S felt it was poor implantation / progesterone levels. But it could equally have been a bad embryo and maybe that's why it didn't implant properly? But we'll never know. My second transfer was a 3aa and we do know she was healthy, despite me being on all the immune meds. His explanation was that sometimes we need a different combination of meds to support a pregnancy and he's added a new drug to my protocol. My ivf clinic are scratching their heads because they think I'm oversuppressed on immune meds - Dr S very strongly disagrees. Ultimately, I am choosing to trust him. Its hard though.

I've always thought that if we could be told it will work, but not until X. It would be a lot easier to manage. The uncertainty is so hard to live with. But I also know I can't risk a pregnancy without medication and I don't think I'm quite ready to draw the line yet.

(Sorry for the essay!)

❤️

open.spotify.com/episode/7eQPTjV8nd4HnVWSZOPmyC?si=uZZ-WAZgTPGanIhFq7YVFw&utm_source=copy-link

Hopefully the link works. It's a podcast called the fertility method, episode is with Dr Shehata x

I chose dr Gorgy over Shehata as he was willing to work with me and my clinic, Shehata wanted to work solely with me. Shehata also said I would lose the baby as I came to him too late ( I was 5 weeks pregnant) Gorgy threw everything at me and took me in confident we could save the pregnancy. I feel he has a lot of treatments and trials things that Shehata doesn’t like ivig, Lit etc so I went with him. I now have my baby finally.

@VenusStarr the podcast is really good, wish I had listened to that a year ago. It’s so true the the nhs just tel you to keep trying when clearly there is an issue. I did wonder how I could possibly have such bad luck. I really hope the new drug is the solution for you. I guess with ivf you can at least rule out other reasons for miscarrying. I am now convinced our issues aren’t chromosomal and that even if the hsg shows scarring that this is unlikely to be the cause of so many losses. I just really need to think about the implications of the medication on my physical and mental health when I have my 4 year old to look after, i can’t help thinking it wouldn’t be fair on him not to mention my husband. I can imagine the medication will make me an absolute nightmare to live with! Also Epsom is a 3.5 hour drive so time wise a massive commitment if I would need to go regularly for treatment x

@Pieeyed thank you, I’m so torn between the two especially as I don’t know my particular issues yet. So glad you got your baby, was this the same pregnancy dr shehata said was too late to save? Do you mean ivf clinic or recurrent miscarriage clinic? It would be ideal if I could get treatment done more locally but I am not undergoing any ivf treatment (not sure whether I should be!!)

I'm 3 hours away @Ralowi it is a full day out when I go down.
Glad you found the podcast interesting, it can't be just bad luck. The challenge is to find what the issue is and even though I know about my immune issues, there is something else going on too.

It's really hard for me to identify what emotions of mine are related to grief and overwhelm and what is medication induced. To be honest, predominantly I think it is my grief and being stuck in a hope/hopeless cycle for so long (we started ttc 4.5 years ago) x

Yes, the pregnancy Shehata said was unlikely to succeed was the one that was successful.
Gorgy worked with my ivf clinic. So they did all the scans and progesterone etc til 12 weeks , Gorgy did the immunes and then I fully swapped to Gorgy after 12 weeks.
Have a read of both of them on mumsnet and google and that should help make a decision. I also did consultations with both.
The treatments, I had no side effects at all. The only thing I found hard was weaning off prednisone, I felt a bit unwell when I tried to do it quickly and had to do it over a number of weeks.

@VenusStarr yes I know how you feel although you have been trying longer than me so it must be even worse. I remember after my first 3 feeling so hopeless but then I got my baby and I so then I did just put it down to bad luck (especially as 2 of those were very early). So when we decided to try again I naively assumed I would be fine but was prepared for maybe one or 2 miscarriages not 6! It’s hard because you know it could keep happening but can’t stop yourself from hoping each time, even when my scans have been behind my own dates by a fair bit and I knew deep down that it wouldn’t end well, I still held on to the tiny shred of hope. Twice now I have been told bad news at scans only to go in a week later and there’s a heartbeat, then another week later it’s gone. So in a way since I have discovered all of the immune therapy stuff it has been a massive relief to have a possible/likely cause. Have you had any counselling? They briefly mentioned it to me at my recurrent miscarriage clinic but definitely didn’t push it. It’s not something I’d ever have considered (I tend to block out my emotions) but wondering if I should. I just can’t discuss my feelings, I never have been able to! I can see how it would be hard to differentiate what is causing the emotions. Even if it’s not medication or grief I don’t think all the up and down pregnancy hormones help! Did the pred affect your sleep too? That is a massive issue and worry for me, I do tend to feel really low if I’ve not had enough sleep x

@VenusStarr do you mind me asking do you get ovary pains/twinges during pregnancy? I do a lot and am now wondering if this is my ovaries releasing the nk cells. recurrent miscarriage consultant seemed very dismissive when I mentioned it. But I have had countless scans over the last year and no cysts have ever been found on my ovaries (apart from corpus luteum occasionally) x

Hi @Ralowi I do get very intense ovulation pains and feelings. I'm not sure about releasing nk cells. Dr Shehata told us that mine are very overactive, so they basically kick in at conception and prevent implantation, so we have the trouble of not only getting pregnant but staying pregnant.

Have you thought any more about seeing a specialist Reproductive Immunologist? X

@VenusStarr ah I see, implantation varies each month for me. I can get a positive pregnancy test and it can quickly turn negative so guess this would fall under implantation issues. Definitely not normal to feel ovary pain throughout my cycle (not just ovulation time). We have decided to go with dr s for the initial consultation and bloods (hopefully same day) and see where we go from there. Although I’m sure once we have forked out all that money Its only going in one direction, assuming he thinks he can help us x

@VenusStarr although having trouble actually booking the appointment, just can’t get through and not having a response to emails

Hi Ralowi, I’m seeing dr Shehata in 2 weeks and was wondering if you could tell me about your appointment and experience with him!
I also had 3 miscarriages at 5 weeks and one ectopic which needed surgery 2 weeks ago.
we’ re traveling from Germany to see him so just wait to know what to expect.. thanks In advance:)

Have you tried an Alice and Emma test? It checks uterine environment

I did the biopsy and came back normal. I do have an overactive immune system which is the only thing I hope is the cause of the miscarriages, exhausted from hearing all good just try again!!