Recurrent Miscarriage Support thread 13 - tests, treatment, trying again

[bakingtins]

Welcome everyone! A thread for anyone who has experienced recurrent miscarriages and is in need of information, companionship, tea and sympathy. Newbies welcome to join at any stage.

Start with the traditional recap please......

It's so hard without being medics!

I was prescribed heparin both locally and at Coventry, but for very different reasons. It didn't stop MC number 5 from happening, but was started when it already seemed to be failing. I do believe it made a difference this time round, but was started as soon as pg was confirmed in place.

It could be worth being very straight with them, but they tend to not like being told what to do!

Good luck tomorrow boozle, will be thinking of you...

boozles When you say they fail at 10 weeks does the embryo measure that size? Have a heartbeat at 8 weeks for example?
My miscarriages apparently happened at 9-10 weeks and I'd seen heartbeats with several of them. In the 4th one when I had serial scans it was apparent it was going wrong at a much earlier stage in a long drawn out process, because I was measuring further and further behind dates I was certain of with 'faltering growth' saddest thing I ever saw
Coventry seem to have revised their progesterone dose downwards since I was treated and I think the truth is nobody knows what dose is optimal. I doubt the local team will give you anything but their "just in case it helps" protocol, which sounds like what I was offered after normal NHS tests by the local team, unless there's a specific diagnosis. Remember that lots of pregnancies succeed after a couple of miscarriages when a woman has decided to take baby aspirin off her own back, or when given additional TLC and scans and no other treatment. In the group where no reason is found and no treatment other than the sort of thing you are doing is offered, success rates are 70%. We are all hoping you are on the right side of the stats this time.

((hugs)) baking, I didn't see a baby on any scans, and it must have been heartbreaking x

Yup, I tend to get MMC at 12 weeks with the baby measuring 10ish weeks. We've seen a heartbeat each time at 8 weeks. Thanks for all the advice guys - it feels so good to talk to people who get where I'm coming from

Yep it sucks being the wrong side of the stats, especially if you have no reason for it.
I feel like proper poo today. Couldn't even face my morning crumpet.
Pleeeeeeaaaaaassssseeeee let this be a good sign. T MINUS 24 and counting just?

Argh! And now there's been a blip on the system and my appointment with the consultant after my scan was never booked!

Woohoo! Seen the consultant - we've been put on steroids, she's upped my progesterone and advised against asprin. She said they would have given me heparin but it's too late, she'd have had to have started it from BFP. She also said the steroids will have been more effective from BFP. slightly frustrating as we came in at BFP and were told to wait. Fingers crossed all this will help!

i only started my heparin at 6w...
how odd how evertyone thinks differently
good luck!

me too, got heparin from in uterine scan... glad you got seen, tho.

That's great news boozle. Sounds like your consultant is on it. Mine took more of a hopeful than active approach! Hope I don't live to regret it. But TWAP.

Good stuff boozle!

Had a frustrating morning trying to chase my initial rmc appointment. Turns out we were given incorrect info. I was meant to do a pregnancy test 7-10 days after the D&C, and if it was negative phone and book the EPU for a blood test 6 weeks from then. The consultant appt will apparently not come until after that as the bloods can take 6 weeks to come back...

WAA! So much time passing....! That puts us at potentially Feb til we start trying again. Not sure I can wait that long...

So what do people think about asprin. My consultant says its up to me if I continue with it but I'm not sure what to do!

Flen I didn't wait as I felt it would be a forever so took the approach of if it happens, it happens. The only thing I would say is that I'm shitting myself now and there doesn't seem to be a clear pathway of care for me - lots of being passed from pillar to post and then being told it's too late to intervene. That said, I'm super happy to get my BFP however stressful it is!

Hi Boozle, here are my thoughts from my blog: justonemoretimeagain.wordpress.com/2014/10/05/it-cant-do-any-harm-the-aspirin-problem/
I'm sorry I can't give you any proper medical advice. My local consultant says it's OK, St Mary's says its only OK if you have a clotting issue. It's implantation that it's supposed to cause problems with, and Prof Brosens said if I really wanted to take it, then wait until after 12 weeks. My heart goes out to you, I'd try again to get the heparin from your consultant if you can. FX everything you're doing makes the difference this time.

Thanks Just, I knew I'd read that somewhere and I had - on your blog! I'm going to try and get her on the phone tomorrow and explain that as I haven't had any of the tests done and she's advised me to stop the asprin I really feel we need to replace it with heparin to cover all basis. She said she would have put me on it but 6 weeks is too late, I need to find some research that says it isn't. Getting medical people to listen is really hard work!

Oh no flen, how annoying that they didn't follow up with you. Such a pain. I wonder if some of the tests might be back sooner?It's amazing how much the process varies from hospital to hospital. My bloods are getting taken next Friday and I'm going to leave it a few weeks before ttc so that results will hopefully be back. I was told by the psc (epu) that they don't advise waiting for the results as there is unlikely to be anything that's going to make a difference. I'm not sure the rmc will agree with this, so we'll see next week. boozle, Did you have bloods taken and were just waiting on results, or had they not even taken bloods? I think it's probably best to get the blood taken at least before ttc flen, from what boozle experienced. At least that way if you want to ttc earlier, you might have results before bfp, even if you haven't had your official appointment

flen. I half waited. I had had the all clear from mr rai at a private consultation at st Mary's. I then had my nhs appointment also at st Mary's but with a different consultant who was actually a bit more thorough and I got my bfp before all my results from her came back (two have since come back clear. One I never managed to have (saline scan to check uterus shape) but it was always supposed to be a 'just ruling it out' kind of thing. I decided to have another go before trying coventry and nk cell testing. I am glad I got the clotting, insulin and thyroid stuff ruled out though as it is properly scary being pregnant again. The delay is rubbish though. Hugs.

boozle. Have you had the all clear for clotting or do you not know either way?

Scan tomorrow - eek. Have been feeling less sick over the weekend sooobviously in my head it's all doom.

Glad you're feeling more positive belle. Feeling rough is a mixed blessing eh?

Oh yes longest I am veering wildly between despair and hope based largely on how sore my tits are, when I last peed, how thirsty I am and just how overall crap I feel. I reckon I flip every hour or so, but have figured out sitting on my Arse makes me feel better, so as soon as I do, I get up and do some random activities and soon feel crap again.
Really big luck for tomorrow. I will be thinking about you

Longest we hadn't had any tests done as we got our BFP the week before our first appointment so it's all preventative. We saw a tiny heartbeat today and I really want to make sure that this little one has the best possible chance of making it through. We've covered the nk cells with steroids and I'm on progesterone so there's just the clotting issue not covered. I've had a straight forward pregnancy 5 years ago so I don't know if it's something you can develop in old age or not. I just don't want to have any what if's and if there isn't really any risk for the baby then I'm happy to do anything!

Tricky! Congratulations on the hear beat. Hopefully that means implantation has already happened and aspirin is safe? Please don't take my armchair opinion for it though. I think trust in your consultant has to be the way forward. They are not gods and questioning is good but they are the best hope we have.

Evening all, flen how frustrated you must feel! Someted things are not made 100% clear and often we are feeling so emotional at the time they should follow up with the aftercare instructions in a letter so we can read when all shock, emotion etc has settled a bit ! Grrrrrr!

As for aspirin question

I am under dr shehata I don't have a clotting issue but he has said 75mg aspirin for at least 6 weeks prior to TTC again and until he tells me otherwise. However I would talk to someone about it as it is medication and never good to self prescribe as all depends on your current medication and any blood tests especially if for some reason you don't clot as well you may be thinning the blood way too much?

I am waiting my results for the NK cells and This final week is dragging ! Am feeling as had all other testing it's my last hope that he finds something to help us carry a pregnancy to term, if nothing's wrong then what?

Unsure of it were a good idea to go for results day before my birthday? But so desperate I cannot wait a moment longer than I have too!

Today is officially 3 and half years of trying , I almost feel like treating myself to something

I know - it's just when you get two different opinions you don't know who to listen to! Apparently implantation is the whole pregnancy sack forming and implanting so it goes on for a while. My gut feeling is heparin is the way forward but if they think six weeks is too late to start then asprin is my only option. Argh!

Dildoos Hugs. I don't think the results day will be a bad day. Being in linepine the worst as you say.

Limbo, even. Stupid tablet. Interesting that Dr Shehata does not share st Mary's views on aspirin. Wish they could all agree!

Boozle- have you been told aspirin in past? How confusing for you! Could you call person who told you to take in first place and ask for their opinion and I would go with that. I was told aspirin from the recurrent miscarriage clinic if that helps? I was also told from a gynaecologist to take from finding out was pregnant so both big upped the aspirin but when to start it differed. Sorry not much help to you now what I'm saying xxx