Recurrent Miscarriage Support Thread 15 - tests, treatment and trying again

[Justonemoretime]

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats :)

Baking my advice would be to say now. I had a boy in my class that told me in a matter of fact way that he had a sister who died in his mummy's tummy. He was perfectly fine with it, it was just something that happened. Having taught Y2-Y6 I think any normal child within this age range copes with information like this a lot better than any adult. By the time they are a teenager the reaction could be quite different. I found out my mum had a mc (before me, and I was her first born) when I overheard her talking to a friend when I was a teenager. I was quite upset I hadn't been told earlier.

Our older kids (15, 10 & 7) have known about all/some of the MCs. We had one MMC, and they were informed at 11 weeks that we were pg, then at 12 that we weren't. That one was hard because of the disappointment involved. The others we tend to have told them about retrospectively, because they've needed to understand my sadness, and how it affects us as a family. We have been pretty matter of fact about it, had a hug, and then got on with it.

My grandma once told me about her MC in between my uncle and mum, and cried buckets. I talked to my mum about it, and she never knew. She was upset to think that Grandma never felt able to tell her.

In our world, I'm not really back at work yet as DS is poorly and being a home wreaking despot. I have now given notice to work that I will start maternity leave on 30th Jan, so I guess this is really happening!

I have been finding photos and letters from my dad, which has actually been quite comforting, and I will have to take both DSs to the funeral, as we are struggling with childcare. My eldest knew my dad, but the little one will have a strange experience. I think it'll be OK, and nice for the family to meet them both...

And cat, love the idea of a little kitten (thanks Belle)... Harmony sounds like a plan.

Well after a very rough, sad night - couldn't sleep. All I could think about was my 3 babies and whether at 38 I'll ever be a mother...

Anyway got up this morning and my consultant letter has arrived. Seeing him on 23rd Feb ok which is a few weeks off yet but was advised need to leave time for blood results to come back as no point seeing him without any results.

So to those who already receive treatment I have a couple of questions. What happens at the appointment?

Plus do we have to stop trying until after the appointment? I appreciate I need to not be pregnant for the bloods which is fine (waiting to take hpt yet). The EPU said wait one period so does that mean realistically I could come on end of Jan so I could start trying before appointment...

Or do I wait? Any advice?

I would wait... one month may make the difference between some treatment and the consultant may want to run some tests when not pregnant... waiting to go to st mary's after my first 3 was tough, but helped me put my mind in order and start runnign and trying to get a bit fitter...

Hugs to you Brummie this i so hard but please don't lose all hope. Lots of ladies on here have been older than 38 when they conceived with their rainbow baby. It's completey up to you but I think a break from ttc while you take the tests would be a good idea. It would give your body and mind a rest and maybe help you to get some answers and a treatment plan before your next BFP.

Tanny I can't recall how old your DSs are but I think it's good for them to be at the service with you. Hope they get through it ok, know it must be very hard. Can't believe you break up for mat leave so soon, it's mega exciting!

XXX

Oh brummie. I'm so sorry you're feeling so down. I identify completely with that dilemma as it was one I was faced with last summer. I have to say that I tried during the wait and got pregnant, meaning that the tests were postponed. I subsequently miscarried, which was a really hard time as I got very stressed that they would identify something treatable and that the last miscarriage would have been my 'fault' because I had been inpatient. Nothing was found, so in theory that pregnancy had as much chance as any - but it was a stressful time and my head got in a bit of a mess. I haven't learnt though as I didn't then take one month off to go to Coventry and instead started ttc again straightaway. Now pregnant and stressing that high nk cells with be the end of this on (if the thrush doesn't get it first).

Really it's a personal decision. A month isn't long to wait in theory but I know it feels like an eternity at the moment. Hugs.

Twilight I didn't know thrush could cause mc? I always suffer with it. Better discuss with my mw next time I'm there xxxx

Cat - it probably can't! My googling was a bit inconclusive and biased by anxiety.

Sorry to hear you're feeling shit about things today brummie, although glad you have your appointment through.
My rmc appointment was totally different as they took the bloods at the appointment, as well as the talking about causes etc and prescribing progesterone. Actually the consultant herself ended up taking the blood as her bank nurse 'didn't feel comfortable taking blood' (wtf?)
I won't be seen again by the consultant (results left on my answer phone and will be confirmed in writing) but other rmc seem to do it the other way round and see patients after blood results back (seems more sensible, and sounds like yours).
If you can wait for ttc long enough to get the clotting results (which may have to be repeated while not pregnant) and the scan then that would be best. If they decide to do karyotyping then that could take longer and we were not advised to wait for these, but if you get results for the foetus they may not test you for this unless indicated by an issue with that.
Depending on when the bloods get taken, it might be worth seeing if you can get a cancellation, but to be honest, my results took 4 weeks so you're actually about right timing wise if it might be another couple of weeks before they get taken.
Such a hard time for you. Use the weeks between now and your results to look after yourself and try to find yourself again.

Now I'm back ttc I'm finding it very stressful and realise what a welcome break the last couple of months was, as there was no pressure to be trying. I had a month on the pill so I wasn't even tempted to track ovulation but i know that's not for everyone
Of course only you can know what's right for you. Are they booking you in for uterine scan before your appointment?

What a chatty bunch! Super fast thread!!

Just jumping aboard to say I love the personalised picture idea tiny! Super idea

Thanks March - no a scan hasn't been mentioned. Just the bloods.

Took me 16 days to get a negative test last time and I had my ERPC on Saturday 3rd. So I don't expect to start trying to get a negative test until the end of next week. When I do, I will hot foot it down to the hospital to do my bloods. Paperwork is all ready and waiting.

So then yes it's about 4 weeks for the appt from them so timing wise, it's pretty much spot on

Brummie sorry its such a tough time. Lack of sleep makes everything a bit bleaker too. If you believe in the use of such things, I used herbal nytol to get my sleep pattern back to normal when it's been a bit all over the place.

About waiting, I think only you know the answer to that. I found it incredibly hard to wait, and mostly didn't. But this last time, I knew it was my last time, and so I waited until I had exhausted everything test wise and had a treatment plan before getting back on the bus. Then of course I was still a bit previous, as my results at Coventry came back after my BFP. Personally, the time (about 4 months) was really beneficial to me emotionally and physically, and I would recommend a wait.

That said, if you come back in a month with a BFP, we'll support you all the way!

brummie i cried when the nurse told me not to try, she then felt sorry for me and said at least just do the bloods and then try while waiting for the results. But as already said, we would support you either way! They were able to do all my bloods straight away with the exception of CD21 and the clotting ones as they had to be 12 weeks after a neg test - my appointment was 8 weeks after my MC so i had to wait for that one, the chromosomal tests took a while to come back but the others were fast and i was able to ring for results. This waiting is so hard and ive had the same conversation with DH many many times.

tiny i LOVE the picture idea, that sounds beautiful. I wish i could run, my DH says its great when you want to clear your mind. Hes actually running the London Marathon for the Miscarriage Association in April.

ourday an online friend of mine is also doing the London Marathon for the MA! Her name is Gemma (not sure if all fundraisers know each other)

I started running between MC2 and 3... i only do 5k usually (love my parkrun) and did a 5 mile run once (also fundraised for the MA for that)... after I have this final baby my goal is to get fit again and potentially do a 10k for the MA...

tiny thats my name too so i know that i have seen her name on the emails, i do the admin side for DH! One of the ladies running has shaved her head as part of hher sponsorship - how amazing. Wow i could never run 5k never mind a marathon, thats a good target to aim for when you can - youre a better woman than me :)

That is her!!! i only know her online but she is lovely.

I didn't sponsor her before Christmas as I wanted to spare her the cold head, but other friends made her reach the target... (if she reached it before Christmas she would shave her head)

That reminds me, I do need to go and sponsor her.

Just checked my paperwork - they are doing:

Thrombophilia screen
Diabetes
Lupus anti-coagulant
Thyroid test
Anti cardiolipin ABS
Clotting screen

I couldn't see anything regarding progesterone- do they not test for this?

I would love to do Birmingham half marathon for MA but I'm just not fit enough!!

Progesterone is given without testing Brummie, as far as I am aware

But with those bloods, I would wait to get the results as it may mean you need heparin / or another anti-coagulant

and I have an underactive thyroid, so in pregnancy need to increase my dose of thyroxine...

And ourday, Gem as far as I am aware never had miscarriages herself, but her mum had recurrent ones so she is doing it all for her mum...

Brummie they didnt test me for prog either, i just askked for the pessaries and he agreed. Unless its covered under the day 21 test since its an after OV hormone? Im not fit enough for anny run, i look like Phoebe on that episode of friends - arms and legs flailing, i can trip over anything.

tiny she is amazing! I would have done the same as you too and spared her! I did a cake sale at work (which i was subsequently told off for from the head of HR), we are doing bag packing at asda, my sisters BF's company are going to use this as their annuall charity donation - still not as good as shaving your head though!

Brummie I have had thrush on and off throughout this pregnancy. A quick Google suggested to me it doesn't harm the baby and certainly my Dr didn't panic - just gave me a pessary. Need another one now.

Sorry, I meant twilight.

You were all right. Bleeding has just started. Fairly heavy (although not gushing) and bright red.

Pads and pjs in bed it is then. Once the bleeding stops I can focus on next step

Brummie, hope you're not too uncomfortable and that your body is doing what it needs to do to heal. Take it easy.