Recurrent Miscarriage Support Thread 26 - tests, treatment and trying again

[bythesea82]

Tea, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so hold on to your hats!
Previous thread here

onestep oh hon it's just such total shit. We're all here to listen anytime you need to offload. You are so much in the middle of the darkest part at the moment and, even though it doesn't seem possible, you will come out the other side. It's just so unfair it has to happen at all. bumble put it really well when she said we're all walking the journey with you xxx

bumble don't think I said Yay for getting your meds sorted! I've a really good feeling about this one for you x

sebs and erica sorry you've got sister issues. Families are tricky things to navigate sometimes. I'm always having to be the middle man between Db and dm when he cocks up! Hope it sorts itself out. X

Onestep, I think crying is a good sign, that your body is letting all that emotion out. Have a good cry and have a cuddle with your dh. Remember we're here for you x

onestep when I joined this thread, and read about all the ladies on steroids, I always assumed they had a different problem to me. I was convinced I had had bad luck, especially as the 3rd had trisomy 22. I wanted it to be bad luck. I wanted my tests to be normal. I didn't want a treatable cause to be found, didn't want there to be anything wrong. Bad luck and keep trying I could handle more than something being wrong. I know not everyone feels that way. But here I am taking steroids, progesterone and heparin for the second time. To begin with I was Very Upset and Very Stressed about taking them, but now I have got used to it, and accepted it. I'm just trying to express that I felt just like that - I wanted my body to do it itself, but I suppose it's all part of the journey, getting to grips with each stage. Sorry if this isn't helping, because I know right now you just want everything to be straightfoward. But you are not alone in your thoughts,and the steroids really aren't too bad. More hugs xx Also there are incidences of people ditching the meds and having successful pregnancies - the meds aren't everything.

onestep - huge hugs lovely. You have been through so much uncertainty in the last couple of weeks and then news of the mc at the end of it - no wonder you are feeling so down. This is absolutely the worst part - waiting and wanting it to be over so you can move onto the next phase of the journey. You will come through it though hun and I have faith that we will all get there in the end. Hope you are being looked after in RL? Please keep talking in here - we are all here for you. x

Thanks bootles & Sun I really appreciate your words. It's scary to think what we are putting in our bodies and putting our bodies through, it's very overwhelming to be honest. What will be the long term effects of the drugs, we just don't know. But then it's even more scary to think of losing further pregnancies, so you just have to go on, pick your head up and go on I suppose. Xx

omestep I totally understand. You get over the shock of a possible ectopic, feel that relief and then it's total frustration until you start to bleed. As I said it took my body the time it took for my next AF to be due, then I bled for two weeks, then next AF arrived on time and I ovulated the next cycle.

Massive hugs and so sorry you're stuck in limbo land for the moment

onestep I have a medical background so these meds aren't complete strangers to me, which helped. I had to keep reassuring myself, and asking Prof Brosens to reassure me, that these meds are safe for pregnant women. Prednisolone (the one that worried me the most) has been used for donkeys years in pg women, for other conditions like asthma, and a whole bunch of auto-immune disorders. Heparin is a relatively low dose at 20mg, and progesterone is produced naturally by our bodies already. It is scary though, and I think thinking it through carefully is important. I was supposed to take BHcg this time too, but the thought if that and progesterone - 2 hormones I was already making - plus some (probably unfounded) stuff I read, and the fact that no-one would prescribe it, made me decide not to (with the support of Prof B who said there was no right or wrong) The fact is none of these are magic cures - they just push the balance more in favour of giving the lining and p!acenta the best chance of being fully functional. Some people do choose not to medicate, and I can understand that. Phew long posts. I do ramble. Must sleep. For now, just take one day, one step, at a time x

Oh god something just now made me google high HCG in early pregnancy and Downs Syndrome. Apparently there is a link . I honestly think I'm carrying another disabled baby here.

With my son my tests took a long time to get a dark line, I can remember weeing on so many tests and it took ages for the line to get as dark as the control. With my last pregnancy (with Downs) I got a positive test at 8dpo and it wasn't a squinter and with this one my line was pretty much as strong as the control on around 10dpo.

As I've said my hcg levels at 4.5 weeks were sky high, more along side the results you would expect at 6-7 weeks. Some hit instinct made me google high hcg and downs and that is one of the early markers.

Fuck fuck fuck.

Sebsmummy - Breathe. Twins is another?

Is a private harmony/foetal DNA test at 10 weeks exactly an option for you to give a quicker/more definite & non invasive answer than combined screening & follow up CVS/amnio?

Thanks Morgan no mention of twins on my scan last Friday unfortunately.

You know when you just know something isn't right and then suddenly all the pieces match up and you're like, aaaaaah. I get it now. The gloomy scan, the abnormal blood results, I just couldn't work it out initially but it now makes sense.

I will look into the Harmony test, I know it's expensive but also that it's extremely accurate. I can also talk to the consultant on Friday, assuming a heart beat is still evident, and see what she says.

Another weird thing was a was in the supermarket this morning and there were two carers looking after some Downs adults and it was extremely sad to watch. I came home and stated I wouldn't want to bring a Downs baby knowingly into the world, for me it just doesn't feel like the right decision. So I will see what happens but I suspect it will either be another MC of tfmr.

Sebs after my mmc#3, which was turners syndrome, I was very worried about pg#4 also having a genetic disorder. Its as if you've always known it could happen, but now you know it can happen, and you think it will happen again, because you already feel like you're the unluckiest person ever because of your history. I'm no statistician, but I should think that the actual chances of two randomly occurring genetic disorders one after the other are infinitesimal, much less downs twice in a row. You're understandably scared, but there is a much, much greater chance that this pg is fine.

Onestep, its always darkest before the dawn. Hugs to you; thinking of you.

Sebs, can I suggest you step away from Google? Understandable that you're worried but if you're not careful you're going to stress yourself out before you get to your next scan x

Just a quick hello and to say sorry for not following.

Was pleased to see there have been good scans! Whoop to bootles and to Sebs surely high hcg is a good sign step away from Dr Google

Brummie is it your scan on Friday? Got everything crossed for you and your DH. The anxiety is horrid.

Baby Louis is doing well and breast feeding is slowly getting there thanks to a breast shield.

Hugs ladies xxxx

onestep You are in the rawest place right now, hold on to the fact that your hormones are still haywire and you have no control over your feelings right now. This is the worst time. It will get better, just break it down into small steps to get through.

sebs you will always find what you are looking for on Google. If you just Google high hcg you don't get downs, if you Google high hcg and downs you will get results. Each pregnancy is different, if your hcg levels were low you'd be convinced you were having a mc. Out of interest, what was sad about seeing adults with downs?

Onestep big hugs Just is absolutely right, the sun always rises. You are in a very dark place and Christ I've been there. But very slowly it does, bit by bit get better.

Sebs you know Dr sister of Brummie says... "Step away from google!!!" Hopefully your next scan will show more

8 weeks today am scared

Got a news update for you all though on Bellende she's 40 weeks and currently being induced as we speak. She's over on the pregnancy board and is complaining how boring being induced is

But by all accounts despite her multiple losses her pregnancy has been very boring and straightforward

Another success story !!

Great news about Bellende!
Its Scott's due date today... he was 6 weeks yesterday
Cat, glad bf is getting there. Nipple shields are a faff, but they really help. We're still using ours.

That is crazy!! Happy due date Scott how is he 6 wks already?? Where has time gone...?

Brummie, I know! 6 weeks.... its not an exaggeration to say I've sleep walked through it... he is a cutie, but he's nocturnal.

sebs I agree about stepping away from Google too (although that's very hypocritical of me!). I got a faint but clear line too at 9dpo (didnt test on 8dpo with frer but might have shown), and line was strong as control 11 dpo and stronger at 13dpo which, from my googling seems a bit earlier than usual, but I'm trying to take this as a good sign. Plus I think I implanted early than average which could be the case for you so a few days ahead would effect the test lines.
As for twins, I've read they often can't tell until 7/8 wks as they're hiding behind each other.

Wow Scott 6 weeks already, really? Hope he's putting on weight steadily now x

Good news about Bellende. Remember her being very stressed in the early stages of this pregnancy and convinced it wasn't going to work out. Another timely reminder rainbow babies do happen.

Brummie, keep taking a day at a time x

sebs early pg is still so mysterious, there is so much they don't understand. Hcg levels can differ from woman to woman and pg to pg. It is torturous waiting, I know, but try to breathe. I feel for you - its horrible when you get something in your head and can't shake it. I can't remember where you are, but FYI the foetal medicine centre in Harley Street, London, does the Harmony test for £400 at 10 weeks, and its more expensive if done later. It's 99% accurate at identifying the three main trisomies, including Downs. Hugs xx

Thanks for update on bellende, I was wondering about her!! Wow today is scotts due date...how is he doing? Still keeping you wide awake at night?

cat great to hear b.feeding is getting there!

brummie 8 weeks is good. How are you feeling apart from scared? One day at a time...

Thanks, Bootle and Girlie, yes he's gaining weight well and keeping us all on our toes, day and night.

Cross post just, I wish had words of wisdom about the sleep but DS was a dreadful sleeper and I never managed to sort it. Hopefully Scott will sleep more as he gains weight, in the meantime, rest when you can!

Great news about bellende. Glad the bf is now going ok Cat.