Recurrent Miscarriage Support Thread 18 - tests, treatment, trying again.

[bakingtins]

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

Hi boozle I knew progesterone had side effects for us but not for baby! What can it do to the little one? My Drs always said it was 100% safe. Grrrrrrgh to not being told the truth!!!

Mum is coming up today to look after DS whilst I attend my appointment and my sister is being very sweet via text. DP is home tomorrow to ferry me about but my understanding is I won't be too bad after the op and it will be a case of managing period type bleeding and obviously grief and hormones crashing. They said I can't drive for 24 hours but otherwise I'm assuming I shall just get back on with everyday life pretty much straight away?

It's such a hard choice diddly. Particularly when your body is screaming at you to try again. I feel like i made the wrong decision not going to Coventry before the last one and feel like I should have got it checked first, but you may feel differently. You chances are better after 2 than mine were after 3, so the next one for you could be absolutely fine.
There's no question in my mind now that I have to go.
If you are almost at the stage of being able to go next month then I would be tempted to go for it. But of course only you can know what's right. My frustration with not having gone is that the timescale of waiting to be able to attend was reset to 0 again at mc 4, whereas i was only weeks away from being able to go.

Don't think that's really helped! Some days i just want someone to tell me what to do,other days i seem to have a very clear idea of what i should do. It drives me nuts!

It does help march thank you. I'm paranoid I'm not ov ing in that crazy TTC after mc way so I've emailed Coventry about what happens if its an annovulatory cycle and I will phone my gp today anyway to be crazy at them too. They might test my hormones then. If only to get rid of me!! Again!!

Are you temping? That should give you a good idea of whether you are ov, whereas opk can sometimes miss it, i gather

It is a hard choice diddly. I so wanted to TTC asap after erpc in Jan and couldn't stand the thought of waiting until April, but that urge has subsided now a bit and I'm glad I'm taking the time to grow stronger. Have gone on low gi diet and monitoring my cycle. Deciding factor for me was in having a nightmare I got BFP and in my dream I just knew it wasn't going to work and was angry at myself for not using protection. Stupid dreams lol.

Sebs after my ERPC it didn't take long to recover physically but mentally it's taken much longer. Currently on my 3rd day back at work full time. Had 2 weeks of half days before that. The week before that the tried full time and didn't cope. ERPC was 12th Jan. Everyone's different, but I would say don't try and rush it.

Isn't it pred that can cause occasional problems rather than progesterone? I think progesterone is totally safe, or that's what i was told. I think pred can cause cleft palate very occasionally

Morning everyone.

When i was in the real depths of sadness i wanted to read poetry about heartbreak, probably to make myself sadder(?!) but i found this. It made me cry but i liked the glimmer of hope at the end, i can only think the person who wrote it had been through something similar to us.
Hopefully you wont think its rubbish amd hopefully someone will find it similarly hopeful:

A star falls from the sky and then into your hands. Then it seeps through your veins and swims inside your blood and becomes every part of you.
And then you have to put it back into the sky. And its the most painful thing you'll ever have to do and that youve ever done. But whats yours is yours, whether its up in the sky or here in your hands. And one day it'll fall from the sky and hit you in the head real hard and that time, you wont have to put it back in the sky again.

I use to epically fail at temping... Mix of forgetting and disturbed nights sleep. Meant to start again just as flen suggested over key days in cycle but forgot to dig my thermometer out. Will add it to my list of Monday jobs!!

Yes, pred can cause cleft palette and low birth weight but there are lots of other factors to this. In the big scheme of things it seemed like an acceptable risk to me and bubs has no identified issues.

Charlie, I also was prescribed pred just in case, along with progesterone and clexane until 12 weeks and the placenta takes over. Not the nicest combination of drugs, but a means to an end...

That's lovely ourday

mrs d I'm in same boat and have just booked my appt 5 mins ago. Have spent the past month flipping between trying again as prob just bad luck and thinking one month off is worth it in the grand scheme.
But now disturbed by boozle's ref to side effects of progesterone, which i wasnt aware of, and thinking maybe i dont want it now. Arghhh

I definitely didn't hear anything about side effects of progesterone. Are you sure it was that one boozle?. And yes, tanny, i totally agree that that is an acceptable risk. Hope it didn't come across as me trying to discourage people from pred. I am entirely convinced that it's allowed people to have successful pregnancies that might otherwise not have them.

Morning all,

Am totally new to all this and hope I'm not too late to join - there seems to be a lot of us on here. Apologies for the next couple of paragraphs as they make for grim reading.

Me 38, DH 42
1st MMC May 2011 - 5/6 weeks, miscarried at 8 weeks
DS May 2012
2nd MMC Feb 2014 - 5/6 weeks, miscarried at 7 weeks
3rd MMC June 2014 - 5/6 weeks, miscarried at 12 weeks
4th MMC February 2015 - 17/18 weeks, induced labour at 20 weeks

As you can see, I have just lost my DD in the second trimester, which has been heartbreaking. I was getting HCG injections with her until 11 weeks when everything seemed to be going well. 13 week scan went well but blood tests for Down's showed a low PAPP-A score. Was assured everything would be ok but was put on aspirin 'just in case' there was a problem with the placenta. Paid for NIFTY test to reassure myself there were no chromosomal problems and results confirmed she was fine. However, 20 week scan showed there was no heartbeat.

Am devastated but absolutely obsessed with finding out why this had happened. It's the only way I can wrestle some kind of meaning out of it all. Found this discussion whilst searching for answers and have found lots of useful info already so thank you!

My dr definitely said progesterone won't do any harm. The PROMIS trial really should have reported by now - very frustrating.

Hello popandcry - I am so sorry to read your story -it's just heartbreaking. Cloud on this thread had a late loss after a good 12 week scan but concerning bloods and it turned out to be a chromosomal abnormality - Edward's syndrome I think.

Have you had any tests prior to this pregnancy? If you're in the UK you should have been entitled to nhs rmc testing after three mcs, where they would have tested for clotting, insulin, thyroid and maybe genetics. You might also have read about Coventry on this thread - they test for high NK cells which are an autoimmune response.

Looking at your stats it is possible there has been a different cause for this latest loss as it was so much later than the others. I hope you can get some answers from foetal testing.

sebs I totally love GoT and can't wait for the next series to come out. Didn't think it'd be my thing as not that keen on fantasy etc but the magic and stuff is a side issue and doesn't detract from the sex and gore. My only gripe is that the sex scenes are all a bit one-sided. I think someone said they come straight out of the imagination of a 13 year old boy!

Welcome thepop. You are never too late to join. This is a rolling thread and we have sadly had a lot of newbies recently. So sorry to read your sad story and particularly about your last loss. It must be absolutely heartbreaking to lose one so late.

Have you had the standard nhs testing or have you been referred? If not, that would be the first step now i suppose. I'm not familiar with the nifty tests. Is that one that gives you a definitive answer or just a more accurate percentage? I hope they are able to give you some more answers If they test the baby now.

If you have read back to you will see information about the standard testing that can be done, and some of us are planning to go to the implantation clinic at Coventry in the next few months, which is something you might want to consider. For the moment i would say look after yourself and give yourself time to heal a bit. Hugs to you

Oh thepop that sounds totally devastating . I honestly cannot believe having or trying to have children is such a tragic, heart breaking process at times. I had no idea growing up, I had no idea even when pregnant with my son. But since TTC after his birth and meeting so many women on these boards I am in awe of the strength and bravery of so many.

I wish I could extend some words of wisdom but I am here afresh myself and feel the same as you. How did I get such a good 9 week scan and yet at 11 weeks the baby died. I need answers and suspect I won't get any. I feel as though my time is up and actually it's that that's pretty much broken my head more than the loss.

Calm down ladies, it is just a typo. No risks at all to baby of taking progesterone, and for you might make you a premenstrual bitch from hell, but only temporarily
There are some risks to taking prednisolone which you need to weigh up. For baby it's as tanny said, small increase in cleft lip or palate, increased likelihood of IUGR and low birthweight. If you are on it you need additional growth scans. It's unclear whether the growth issues are due to he steroid or to residual poor placenta function even though the NK issue has been treated. For you, you are likely to have some side effects e.g. increased hunger and thirst, weight gain, irritability and insomnia.

If going on the Coventry protocol without testing is an option charlie I think it's worth doing. Talk to your consultant about the risk/benefit of the steroids. The protocol is twice daily progesterone pessaries from cd21, daily heparin injections from an early scan showing intrauterine sac, prednisolone 20mg, all taken until 12 weeks, then stop the progesterone and heparin and taper the pred. There is a 'pred thread'on the conception board if you want other experiences.

littlebear just be aware the implantation clinic is self funded (non profit making and done in nHS hospital but is £360)

thepop i'm so sorry to hear about your losses. absolutely devastating to have got so far and lose your daughter. I hope the testing process brings you answers and some peace

Thanks for the welcome - it really means a lot.

Had tests done at local recurrent miscarriage clinic last summer - was pregnant when results came through and was just told they were ok. Am now chasing up info. Also opted for all bloods/tests/pm after latest loss but obviously results won't be through for a while. In the meantime, have got myself referred to Liverpool and have just emailed Coventry so maybe see you all there! I thought there was no harm in exhausting all avenues...

I find the whole thing so baffling, though - why are different things looked at at different places?

Re what to do after a miscarriage: I have been drinking wine but then remembered I can't as it gives me a hangover! So am just off the the gym for the first time in 5 months. It could be painful!

sebsmummy1 yes, the thought that this is it (DH is ready to stop trying) is the most difficult part. But it's the big question, isn't it - how many more times can we do this? My DS is growing up quickly and I don't want to look back and think I spent his first few years ill/in hospital/grieving. However, I want all stones turned before I begin to contemplate that train of thought.

Sorry, this is why I shouldn't post without proof reading because I'm rushing! There's no risk at all with progesterone that I know of - I meant to say prednisolone and those are just the risks Tanny mentioned and I think they're very rare. Sorry for causing undue panic!

Sorry for everything youre going through Pop

Re the coventry protocol - my consultant has said i will take the fragmin to term and treat me as if the thrombophilia was positive. Why do coventry stop the blood thinners? He said prog to 13w but im so scared of stopping, thinking of just tapering off?

The heparin in the Coventry protocol is nothing to do with clotting, it's cytoprotective for the developing placenta. If there is any clotting issue it would be normal to continue heparin until 3rd trimester.
I was told to just stop dead with the progesterone at 12 weeks, the placenta should have taken over at 10 weeks. I actually tapered it off for a week, once a day for a few days then every other day, it just felt less sudden.

Thank you for the clarification baking i think i might do the same with the progesterone to be on the safe side

pop I am so sorry to hear what you've been through, the last loss especially sounds devastating. You will find many understanding (and agreeing) ears (or eyes...) on this thread.