Recurrent Miscarriage Support - tests, treatment, trying again - thread 11

[bakingtins]

Welcome everyone - pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of information, moral support, tea or sympathy. Newbies very welcome.

Can we start the thread with a recap of where we are all up to again, please?

Hi all, I am hoping I can join you, I am new to this and want to say how amazing you all are and congrats to all those who are pregnant!

I had my first mc a year ago, found out at 12 week scan that it had not grown since 8 weeks so had ERPC. Earlier this year i did not have AF for 56 days but preg tests were negative. When it finally came it was the most painful thing I have ever experienced, very heavy, had to stay in bed all day and when I went to the loo it just gushed out (sorry if tmi). I wondered if I was having another mc but as tests were negative I thought it must just be a mega AF.

A couple months later I was pregnant again and told my GP that I was worried about what that mega AF was, he didn't say much just to not worry about this pregnancy. A few weeks later I started to bleed and when GP referred me to EPU the letter said I had already mc twice before (i guess he suspected the mega AF may have been a mc after all).

At first the scan showed a hb and the dr agreed that the mega AF a few months ago could have been a mc but we will never know. A few days later the scan showed i mc again at 8 weeks but this dr dismissed the idea that it could have been my third.

My question is do you think i should ask my gp for testing? I don't want them thinking I am just trying to jump the queue as I know there are plenty of ladies more worthy of testing than me, it's just now I have had a natural mc it makes me wonder even more if that was one before - it was very similar and nothing like a normal period, i was in agony! Have any of you had a period like this before? If I get tested I will feel guilty that I don't really deserve it but if I mc again I will feel guilty that I didn't try to prevent it.

Sorry for the long story. Your advice is greatly appreciated.

If your GP is of the opinion you've had 3 then go back to them and ask for the referral.

I didn't even ask, I went in today for another reason and told them about my latest one she said 'right, that's 3, are you actively still trying? Yes? Would you mind if I referred you to the recurrent mc clinic? Good. Appointment booked for Monday' (I've since rebooked it!) hopefully you'll get one as good as mine

Hi Purple welcome to the feed. Sorry for everything you've been through and for the losses.

I have had fertility issues for many years and two mcs this year. If there's one thing I've learnt during this time it's that you mustn't feel guilty for pushing for help. If you don't ask for the help others will. With the NHS it's often a case of he who shouts loudest...

I would suggest you push your GP for some blood tests for issues like auto-immune, blood clots, thyroid and hormones. You could also ask for a scan to check your uterus is healthy.

As you've had two mcs and a suspected third (sorry but it does sound like a mc to me) I really feel you would not be unreasonable to ask for some help.

Hugs xxx

Tanny congrats on being 14 weeks and having the all clear on the Down's syndrome test! I'm glad they are offering you another scan, all the reassurance you can get will no doubt help you to feel better. It's all going to be fine though :)

Tiny it's a tricky one on the scan. Can you be a bit naughty and turn up at EPU at 10 weeks with fake stomach pains?

I plan to pay for a scan at least every other week for the 1st 14 weeks if I manage to conceive again. Two week wait is killing me. It's day 22, time is standing still!

XXX

Hello. Sorry we missed each other twilight. Hope your test went well and you were out quicker than me. 90 mins in a waiting room with a three year old is not high on my top ten ways to spend my day, I must say!

Glad you got your procedure booked, sleeping. Getting it physically over with is a positive step.

purple welcome and sorry to hear your story. I was referred to the rmc even though one of my mcs was a chemical pregnancy that was on my records as I reported it at the time but there was never any 'proof' of as it were.

Tiny is that more sensitive than the test they do as part of the combined test on the nhs then? I am sure that with your history you can self- refer to an epu for a ten week scan. The Whittington has a walk in clinic.

Lurker, yes I think it is. Plenty of threads in the antenatal choices boards here and I have a friend who has done it before.

effin there is a RMC clinic based in the Cotswold centre at Southmead. I saw the rather marvellously named Dr valentine Akande. Prior to my referral I saw Dr Uma Gordon privately at Spire (after my 3rd MC but not 3 in a row) and she arranged for my GP to run most of the standard tests. It was Prof Quenby in Coventry that actually got to the bottom of it though. Southmead RMC were v good in my successful pregnancy, scanned me 5 times in first trimester and were v caring.

purple welcome to the thread and sorry to hear what you've been through. I'd go back to the sympathetic GP and ask for referral. cat is quite right about the necessity of being pushy, don't feel guilty about it.

tiny that's great news! So pleased for you. Lovely to hear positive things!

longest the harmony test is about 98%/99% accurate I think, the combined test less so, but I can't remember actual figures.

Welcome to all the new posters, and sorry not to name everyone - haven't been on here for a few days and its moving fast again. But hi to everyone, and hugs to all those feeling low.

I need some opinions - will make a long story shorter.

Results of last mc: Chromosomally normal.
I am gutted. That means out of my 4 losses: 1 unknown, 1 T22, 2 chromosomally normal but one of those was a tfmr after severe developmental problems picked up on 12 week scan.

I really was rooting for chromosomal causes. Also, before results back, I discussed my clotting at an appointment at St.Mary's - I had been put on clexane and aspirin at 6 weeks as my TEG came back 'abnormal' in pregnancy (normal before), which I had subsequently questioned Mr Rai (consultant) about and he agreed I needed to take it. Now Prof Reagan has said my TEG was NORMAL in pregnancy in her opinion, and she would NOT have put me on clexane or aspirin.

So now my options are NK testing in Coventry, which I am reluctant to do. I hate the thought of meds, and prefer to belive I have just been unlucky and the causes are unknown (normal pregnancy with DS) I know its sticking my head in the sand. Finances are limited too, plus lack of evidence that there's a link (as per St Mary's) but I know you, baking, succeeded with the treatment, and tiny and tanny you are also under them - but weren't all your results normal?

Sorry for the me me me and the long post but I just feel desperate and overwhelmed, and wondered if anyone has any gems of wisdom?

My gut says one more try then Coventry (because I always, totally illogically, thought the 5th go would be 'the one' -so no pressure then)....

I mean Tanny and tiny - baking I know your NK cells were high - but you were/are all on the coventry protocol anyway? Or at least for the first 12 weeks?

Tiny, great news! So pleased for you!
It's so frustrating, isn't t, Bootles, that all of these consultants don't seem to be able to agree! Prof Brosens and Coventry said that he would proscribe the heparin as standard as it supports the placenta, rather than because it thins the blood. He also says that, for every woman who has a raised TEG test when pg and suffers from RMC, there are probably loads more who also have it and don't have RMC. The problem is, no-one has ever tested them! He says that the work at St Mary's only takes you so far, and that there is something else going on, interfering with implantation way before clotting would cause a problem. But then, people with diagnosed clotting issues do seem to benefit from the St Mary's treatments. I wonder what the medical advice will be in 10 years time? Grow the baby in a jar in your handbag, probably!

I'm on the Coventry protocol, too (well, progesterone from +ive test, having failed to get pg in the first three months). I'll be on the heparin, anyway. I was all clear on the St Mary's tests.

Hey Bootles, you must be in a real quandary about what to do. If it helps at all, Coventry was last on my list, and I think the same is true for Baking and Tiny, and this is my last go, so you keep good company.

They refer to themselves as an implantation clinic, meaning that NK cells is just one thing they look at, but they think that a lot of MCs are down to early implantation failure, and aim to improve this. They think that the "scratch" from the biopsy can sometimes be enough to trigger a healthy response from the lining. I certainly think this was the case for me.

Have a look online at some of Prof Quenby and Brosens articles. They might help.

Cat keeping my fingers crossed lovely x

Just I think jar in handbag would be a winner!

I only knew the genetics of my 4th MC but having a chromosomally normal loss after testing normal on the NHS tests was what prompted me to go to Coventry. I had high NK cells and was on the steroids, tanny and tiny were both normal so only had the helping-implantation combination of uterine scratch, progesterone from day 21 and clexane (used for protection of placental cells, not clotting issues) In fact AFAIK tanny had steroids because she got a BFP before her results were available. I think there is quite a bit of professional rivalry flying around RMC circles, Profs Q and B have published a lot of papers on their work in peer reviewed journals, so whilst clearly it's not yet the whole story and the treatment is somewhat experimental, it's unfair to say there's no evidence. There is so much not understood that it's hard to say for an individual what has worked, they are collating outcomes of everyone treated so maybe in 10 years we'll know, but that's too late for most of us.
You may not want to elaborate on what developmental issues means, but my understanding is that with NK cells either implantation fails leading to early losses or the foetus is literally starved out as the placenta is attacked. I watched in slo-mo a little foetus with a HB that got weaker and weaker at subsequent scans, with growth further and further behind dates It's relatively unusual to consistently lose pregnancies past the point where a HB is detected if the chromosomes are ok.
Good luck figuring out what you want to do next, it's a tough decision.

Yes, Baking is right, I was also on steroids as results weren't back when I got my BFP. Horrible things. I understand the reluctance to be on loads of meds, I couldn't wait to be free of them. I came off the progesterone at 10 weeks, the clexane at 11 weeks and the prednisolone I weaned off of slowly, taking my last one just before 12 weeks. Not agreed, but mostly cos I couldn't stand it any more.

Just is still going to get her BFP, I know it.

Thanks Tanny! I have just agreed to do a stand up comedy gig in January (always fancied giving it a go and now I have a chance to die on stage). I expect that now I have decided to do that I will immediately get pg and be too Ill/tired to be funny, or even turn up. I'm just so fed up with putting life on hold! My reflexologist is coming round for a home visit at 9:00 tonight so that'll be nice.

Thanks all. I just don't know what to do. baking 'lack of evidence' was not my phrase, but the Dr I first saw in St. Mary's. The developmental issues were: NT of 9mm (normal is around 2.18, downs syndrome would be thicker, but 9mm is grossly abnormal) bilateral pleural effusions (fluid on the lungs) oedema everywhere, ascites, tachycardia (raised HB). Given 90% chance of death in utero. There is no way, given the condition of the foetus, that pregnancy would have successful, so we decided to end it. Dreadful.

I'm about to go and eat dinner, so I'll stop in a minute, promise!

Purple, I can only echo Cat and Baking. Fight your corner. And good luck.

Ooh, dinner time!

Also prof Reagan saying my TEG is normal in pregnant and Mr.Rai saying it isn't is just frustrating. Prof Reagan is not a fan of the 'clexane anyway' and quotes a study where using meds with no real reason to gives a worse outcome. For every study that says one thing, there's another that says something else. Yes in 10 years we'll all be saying 'Ahhhh..that was it' - definitely too late for me.

It would be a lot easier if all the 'experts' could agree with each other!
bootles sorry if typing all that out upset you, I was just wondering if that loss was consistent with a dodgy implantation since no genetic cause was found. Just bloody heartbreaking to get to a 12 week scan and then find problems when you've struggled so hard to get that far

Its ok baking typing it is cathartic really. I just don't know if those problems can be caused by implantation issues - it looked fine at 8 week scan. OH finds my indecisive nature frustrating and thinks it's worth giving Coventry a go. Maybe I'll just book an appointment..and see how I feel nearer the time..

Can I ask a stupid question? What is nk testing and how does it help? Are there any risks associated with it? I've just eaten four sausages - bit sure this is going to help me loose a stone...

Not sure even - silly phone!

Not a silly question at all. NK (natural killer) cells are a subset of T lymphocytes (white blood cells) which are part of the immune system that kill off invading viruses, cancerous cells etc. One of the things thought to cause RMC is an imbalance of the immune system not allowing the body to 'tolerate' the foetus. NK cell levels can be measured in a uterine biopsy (part of the tests done at Coventry implantation clinic) or on a blood sample (controversy whether this relates to uterine levels or not)
One of Prof Q's papers says that the NK cells are only a marker for deficient steroid production, but whichever way you look at it, steroids are the starting point of treatment. The London doctors who also treat this use higher doses and add in other immune modulating treatments like intralipids, IVIG and humira.
The Coventry protocol is they see you at least 2 cycles post MC, definitely not pregnant, and 7-10 days after ovulation. You have a scan, and they take the biopsy by inserting a long flexible tube through the cervix and pulling off a bit of lining, at the same time 'scratching' the lining which has been shown to stimulate a healing response and better linings for the few cycles following. It's comparable to a smear test, discomfort wise. The biopsy is grown in the lab and they assess NK numbers and decidualisation (how well the lining prepares for pregnancy)
I was told there's a small risk of infection, though everything is single use and sterile, and a tiny risk of perforating the uterus.