Recurrent Miscarriage Support Thread 19 - tests, treatment, trying again.

[bythesea82]

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.

I did seb
I went to Coventry and fell pregnant on the second cycle after the scratch.
So progesterone from CD21 to 12ish weeks and heparin from 6w scan to 12ish weeks as well...

I was lucky I had a good GP who just read my letter, filed it in my notes and 'googled' Prf. Quenby's name while i was there to reassure himself she was reputable

and at the EPU some of the nurses had been to talks by her, so knew her as well.

I am 35+4 today and it is my last day at work!

Whoop whoop Tiny. Following on Tanny's heels, how exciting. You guys raise my spirits, I bet you can't wait to huggle that bean.

You are right Jady

7 pregnancies and 2 children is enough... I am nearly 42 and this was last chance... that is why I went to Coventry for the last option as I didn't want to try again without some sort of treatment...

my maternity notes list 1+5 (1 child 5 miscarriages) and one day the health care assistant taking my blood pressure mentioned about 5 children... she did look embarassed when I corrected her... but they probably aren't used to seeing such big numbers...

So not the low dose steroid Tiny, is that because you tested neg for high NK cells? Congrats on your last day btw

This does make me wonder if there is a link between older women and pregnancy and clotting and hormone disorders.

And makes me feel newly shit as I was nearly put on heparin after my 8 week appnt but they had a meeting and decided against it (although I was on baby aspirin). I feel as though I would have got it if id fought for it but I just accepted what they said

sebsmummy, I was on progesterone and Dalteparin (?) which I think is similar to Heparin. And still didn't work. Have been told to follow same plus aspirin next time but decided I'm going to try Coventry first in case it is NK cells. Feels like guesswork and no guarantees - which does make the whole thing incredibly stressful.
Jady - agree that the m/c where I saw scan (reassurance scan - what a joke!!) was much worse, and being told gender definitely made it real.
I have also revised my m/c figure though, previously thought I'd had five - four definite and one suspected. However after recently having a second very heavy/crampy period but knowing there was no chance I'd been pregnant, think that's probably what the other was too.

Wow tiny that feels like it's come round quickly. Not for you I am sure! Hope you have a very restful few weeks before eviction day

I think in my situation because I've got kids, and they have a sibling, it's more anxiety and not knowing about the future that I feel, although each m/c is also quite traumatic. Whereas I have a close friend without children who's trying but at 50% risk of miscarriages due to previous surgery. She feels like she's only really got one shot. If she conceives and miscarries I'm going to be an absolute mess, just thinking about it and I'm in pieces for her. I did think I could be a surrogate for her as I have easy conceptions/labours but... erm the equipment doesn't seem to be working any more.

And TinyTear, so reassuring to hear good news. Sorry to hear that some are having bad times at the moment - but there's still hope. They say the darkest time is just before dawn.

My NK cells were normal so no steroids... All my clotting tests I had done at St Mary's were normal as well... basically all my blooming tests were normal when I wanted SOMETHING to be treated...

that is why coventry worked for me as they were proactive and gave me the progesterone and heparin and i could feel I was at least trying...

Last day Tiny that has come round so quickly!!!!

Re previous dcs I'm so worried that I will just continue to miscarry and that I will never have a child. It really frightens me.

Kind is absolutely the word I would use to describe Mr Watts. He was so so kind. A bit uncool maybe in his short sleeve shirt but he's old school. He wasn't swanning around in usual consultant mode.

So the bleeding is very very light. In that (tmi) there was hardly anything on a Tampax overnight and I'm wearing a liner.

Went wailing to my sister who was completely not fazed at all and said it must be an anulovatory cycle and if it's only a bit, don't worry about the lining I'll be ok for Coventry.

Obviously if it gets heavier that's different.

We will see.

Had nightmare about pregnant friends being mean to me last night. Really upset me when I woke up. Got counselling tonight so hope that will help.

Tanny hope little Bertie is doing better today

minnie I worry about my clients too but then have to remember that if I take care of myself now then I'll get back to work more able, also I'm not the only one who can do my job, there are colleagues who can take responsibility. It does sound like giving yourself more time could be helpful?
ifinished I've not heard of those, its good to know they are available as i prefer being at home.
sebs I find that going for a walk or exercising seems to speed up my bleeding, and sitting seems to slow it down tho I know what's happening inside can't always be simplified to a bit of exercise.
tiny congratulations on making the milestone of your last day at work before baby arrives

Posted a message last night but asked for it to be taken down incase it came across as smug to those yet to have d.c (would never ever ever want to do that) because i am totally and hopelessly obsessed/besotted by my ds who is 20 months tomorrow. I was just trying to tell Tanny that he had jaundice too but it is completly fine and although another worry at the time the lovely tan went fast and he was fine, just a bit too lobg in the ol tum tum!
He is my sanity, and i only wish all you beautiful, tallented, strong, wise, loving women could have your own dc in your arms asap! Xxxxxxxxxxxxxx

tiny congrats on your last day of work. It does give me a bit of hope to see people reaching this point. Were Coventry happy to give the drugs even though no issues had been found? I'd feel happy about that too.

sebs same issue with bleeding here (although I know your a bit further on than me) only tiny bit of spotting brown yesterday. Back to full on red with clots today. So annoying. A friend who's also had a medically managed mc said she blamed the drugs for messing up her cycles for months- I'm hoping not!
I know what you mean about older women and immune/clotting issues too. I've got a weird feeling that might be our issue. Just with the baby dying around ten weeks when the placenta takes over. If it couldn't then maybe thats the reason. Or I could be clutching at straws!

jady totally agree about seeing the baby on the scan. This time is so much harder having had two perfectly normal scans and getting so far. The two early mcs were easier emotionally as I was spitting by 5 weeks and all over by 6and a half so it was easier to stay detached.

'Spotting' not 'spitting'!

Nice to hear you're breaking up tiny. That baby will be here very soon! I'll be 24 weeks tomorrow and have another 12 weeks left at work. Desperate to break up now as my manager is a giant arse who takes herself far too seriously haha.

brummie counselling sessions really helped with my nightmares, hopefully you can work on that at today's session. So pleased to read Mr Watts was nice, there needs to be more like that in this world. I never saw a kind one until I went private. Very frustrating!

Congratulations tiny put your feet up!

minnie the Coventry protocol us all about optimising lining for pregnancy, the theory being that it needs to be 'selective' as well as 'receptive' hence progesterone from early in the cycle (7 days post ov) and heparin which is protective of the developing placental cells. The steroids are only prescribed to the 10% of their patients who have high uNK cells, but everyone gets progesterone/heparin and there has been a lot of success on the board on that protocol.

Thanks baking that's interesting. Do rmcs usually agree with following the Coventry protocol or does it depend on the consultant? Just wondering whether there are conflicts of interest/big egos in this world and I might need fighting gloves on. Obviously I'm miles ahead of myself having not even got an rmc appointment yet! I'm pretty impatient to find things out now!

Minnie my consultant was really pro Coventry - said great things about Prof Quenby and says he has referred people before.

But they are both Midlands based and both fairly senior at Royal College of Gynaecologists and he referred to her as Siobhan so he obviously knows her well.

I think it does vary massively

Unfortunately many clinical commissioning groups still don't fund the nationally recommended 3 IVF cycles for couples facing infertility. Fertility Fairness UK is raising awareness of this postcode lottery.

If, like me, you feel every tax payer in the UK should have equal access to fertility treatment regardless of their address then please take a moment to sign this e-petition:

epetitions.direct.gov.uk/petitions/70037

Thank you!

minnie I think it really varies. My consultant was quite dismissive, but then once I had a diagnosis he was happy enough to go along with the protocol. I hope my success on it means he'll be more open minded in future.

Like Minnie the Coventry protocol gives me hope. I've just got to get to May and then I should be on cycle 2.5 with any luck.

Had my acupuncture and talking therapy this afternoon. I always dread the talking aspect as I hate crying, it's so bloody depressing. But it enabled me to discuss my frustration at being asked 'if I'm feeling better now' by my family as though two weeks after the event I should have pulled myself together and stop being so bloody miserable.

So I get back to my parent's house to pick DS up and my Dad asks drum roll..... 'are you feeling a bit better now?' I said no. 'Oh' was the reply. I said I really would like to say yes but that would be a lie I'm afraid, I'm not feeling better at all, and then there was silence lol.

Well done sebs - why should you lie? I'm so sorry the bleeding is ongoing.

I agree with that petition wholeheartedly cat and will be signing!

counting I'm sorry your scan wasn't reassuring. There's every chance they have it wrong (measurements are so tiny at that stage) or your dates are a bit out. I really hope you can get a scan a bit earlier to set your mind at rest.

I chased the hospital on my gynae appt today - I asked for a referral to do a lining check/hysterocopy based on light periods. The receptionist checked and said 'yes, you have an appointment next Tuesday' So the letter obvs got lost in the post. Anyway, AF due this weekend (pretty sure she's on her way so I will have just stopped bleeding. I asked the receptionist if that was an issue and she said no. How can it not be an issue?! How can they check lining when it's not middle of cycle? Aargh why does it have to be so hard?!

brummie I'm so glad mr watts was nice! Loving the description of the short sleeve shirts, he sounds like a dude. Did you ask him about lining or the light periods? Would be interested to hear what he had to say.

Hi all, thank you for your lovely, supportive, balanced messages. It really helps. My dates are based on the acute ovulation pains I experience each month so I don't feel like there's much scope for them to be wrong.

Today has been awful. This morning I was a wreck.

This afternoon the TABLET nurse rang with my blood results and my TSH (thyroid stimulating hormone) is outside range, which is what they would expect for a patient on the placebo so I am now taken off the trial and they have written to my GP suggesting they prescribe levothyroxine (the treatment) as until I miscarry there's a chance it could help the pregnancy. I spoke to the GP and he was not particularly supportive. He did say he was prepared to prescribe it but he also used the expression 'clutching at straws' and 'experimenting on myself'. To be fair he may amend his view when he reads the letter from the trial consultant. Their recommendation is trial protocol. I just spoke to my medic friend who agreed that it is a serious and legitimate request.

My real concern is that this pregnancy will/has ended and my worry now is that I'll have a battle on my hands getting them to provide levothyroxine from the outset of the next one.

Actually no, that's not my real concern, my REAL concern is work tomorrow. But DH is plating up chilli and cheese, the world my look a little less awful once I have wrapped myself around that little lot.

Thanks again wonderful ladies.

tiny that's great to hear, enjoy your time off now
tanny hope little Bertie is feeling better soon

Thanks Monten. It did feel good just to say it how it is

I now seem to be in the mucus stage. Think I remember this from MC1. I got all confused and starting thinking maybe it was EWCM (it wasn't) is it the final bit of the living do you think, ie it's nearly over?