Recurrent Miscarriage Support - tests, treatment, trying again - thread 12

[bakingtins]

Welcome everyone! A thread for anyone who has suffered recurrent losses and is in need of support, information, moral support or tea and sympathy. Newbies very welcome.

Please can we start (as is traditional) with a recap of where we are on 'the journey'.

Morning all,
Good luck today Longest and Tanny. Looking forward to hearing lots of good news updates later!
Bootle, glad your appointment at Coventry went well.
Coco, glad the lifestyle/diet changes are going well.
Curtains, I hope you are able to get your referral asap. Seriously, much of the research is so new that local (even local specialist) RMC clinics don't know the latest treatment plans (e.g. the aspirin 'it can't hurt' advice here.
All the best to those who are just starting the testing phase.
I'm still waiting for my letter for my HSG. I'm 8DPO. Boobs hurt (but been there before and nothing doing). Hmph.

curtains, this may not be what you want to hear, but I think it's best to be prepared. I had terrible HG in my first pregnancy and again in my second, which turned into a MMC. Unfortunately I was 3 weeks between diagnosis and completion of m/c and was sick the whole time, but it went away the same day the tissue passed (despite them saying it would take a few days to go away).
Fingers crossed this is not your situation and that the news is better.

Good luck today longest and tanny will look out for updates like an anxious mother hen

How many weeks should you be curtains? Is there any possibility the scan was just too early? Are you waiting for another scan to confirm things? I don't want to do the who!e hope where there is no hope thing - just a thought. I guess each pregnancy is different, and the symptoms too. Sorry not to be more helpful.

Tanny gosh 20 weeks already! Wow. Thinking of you today. The biopsy itself was not tooooo bad, but a little sore last night.

longest is it your scan today? Thinking of you. And after a long flight too!

Cross post with march...poor you to have had such bad sickness even though you knew the situation. I think every woman is different too..I have always been able to tell quite accurately what is going on by my symptoms, or lack of them.

Glad you appointment went well bootles
Do you now have some boxes of cyclogest for the next cycles?
Good luck!

And Good luck scan ladies tanny and longest

Can't really stop as manic at work but just want to say good luck and thinking of you to longest and tanny. X

Adding my good luck wishes to tanny and longest

Welcome curtains sorry that you have to go through that heartbreak again. It never gets any easier... I'm afraid I don't know how long it'll take for the symptoms to disappear, but my guess would be it'll depend on how quickly the hormones leave your system. Look after yourself, it's a tough time. And I agree about getting referred! If they did find a clotting issue, then this needs to be treated the minute you get a BFP (with aspirin and/or heparin), so that you have a chance of having a viable pregnancy. The person who said it wouldn't get treated before a viable pregnancy is confirmed was talking b**cks (sorry to be so vocal, but it is just wrong information, which could have a significant impact, this makes me really angry). Good luck!

Welcome back coco great news that you have had some results! Obv not great news that you are gluten-intolerant and pre-diabetic, but you can do something about those things. I am a big fan of low GI eating, it made a lot of difference for me!

Hi at everyone else, sorry for not more name-checking. Very busy with work, which leaves me little time/energy for anything else. CD10 today, and feeling lost about what to do... I want to ttc, but don't want to at the same time, if that makes sense

Thanks all. Scan was absolutely fine, they couldn't see one artery, so I need to go back in a couple of weeks, but all looks good so far. I feel like I could sleep for a week after all that...

Great news Tanny

Great news Tanny!!

Yay tanny!!

Fab news tanny

Yeay Tanny!

Welcome back Coco. Have been thinking about you. Really pleased to hear things are sounding so positive for you.

Hugs to curtains and march though. Just vwant to echo everything that's already been said. You have to push unfortunately to get the right advice and tests.

Well it's good news from me too! I saw a heartbeat and am measuring 7w+3, which is further than I have ever been since dd. Keep grinning to myself that I have broken the fhb barrier though I know it's still eaely days. I thought I was 8 weeks so a bit worried it's meaauring small but the same happened with dd and I was getting negative hpts right up until af was late even with sensitive ones so hopefully I just ovulated late. So far so good anyway. Have postponed st Mary's scan till next week.

Is good to be home

Hello again everyone and thanks again for all your support.

I have a few more questions, if that's ok?

I was told (2nd hand) by an obstetrician that they wouldn't start treatment for my blood clotting disorder (factor v lieden - if that makes any difference) until my pregnancy was confirmed viable. Several of you here have said it should be as soon as bfp. I agree with you all! But so that I can argue discuss this with the dr, please can you tell me where you have your information from, so that I don't just say "people on the Internet said..."! ? The nurse at the EPU said she thought I should be on heparin but the dr didn't agree...

Do you know anything about progesterone? Mine was low on the tests I had yesterday and due to a late loss last year, my previous consultant said I should go on progesterone meds, but again I'm told this should be only once viability is confirmed. From what I've read on the web, progesterone being low can lead to early miscarriages so I'm wondering why they won't give me these straight away too.

Is there a definitive, big name clinic it might be worth me investigating if my current dr/hospital don't seem to be clued up? I think someone mentioned Coventry before? I'm in manchester so had hoped that there would be something around here, but don't want to be fobbed off.

I'm not sure what else to expect/hope for from the hospital to be honest. I have one child (4), then early miscarriage, then lost twins at 22w last year (no known reason), then early miscarriage June and again imminently this year. So I'm thinking they may say that there can't be much wrong if I've already had a baby. I have diabetes, which is generally well controlled, and have had a number of blood tests for thrombosis type disorders, thyroid, all the usual stuff, all of which have come back clear (apart from the factor v lieden). Do you think there's anything else they can do/test for, or am I grasping at straws?

Thank you

Yay lurker!!!

Curtains, Coventry gave me progesterone from day 21, so even before BFP... Do you have a friendly GP? That is something they can give you

curtains I don't have specific experience of a clotting disorder but my understanding when I was being tested for it was that factor v leiden was a treatable cause of recurrent miscarriage and i would be treated for it if I tested positive for it. Try the miscarriage association website or the patient.co.uk for quotable stuff to take to your dr though you might find actual medical research if you google too. A lot of us on this thread have been seen by prof regans clinic at st Mary's in London and profs quenby and brosens in coventry but I think there is a st Mary's hospital in manchester too that a couple of people on this thread have been to. Don't know how specialist it is. I think Liverpool has a good clinic too. My consultant rates it. Coventry is more about the latest experimental research into implantation issues. Your clotting disorder ought to be understood by any of the established rmc clinics. Good luck!

Ps thanks tiny! Xx

Pps curtains a lot of us on here have at least one dc. It shouldn't stop the dr taking your rmc seriously. Some of the factors that cause rmc are acquired. You may find you're not eligible for nhs ivf if you already have a child but that's not usually the recommended treatment for rmc anyway.

Amazing news Tanny and Lurker!

Curtains, I'd certainly expect to get progesterone from bfp, and probably heparin from confirmed in-uterine scan. Maybe even treatment such as aspirin before (I know I hate self-medicating that drug, but it can help with actual diagnosed blood clotting issues).
Try this website www.ncbi.nlm.nih.gov/pubmed/ for medical journals - you will probably only be able to get the summary/abstract, but it can be useful. Hope you get someone to take you seriously soon!

I think my consultant's secretary is going off me... she sounded tired when I rang just now. Hopefully I'll get what I want soon enough and then I can give the poor woman a break....

longest that's amazing news!

curtains I defer to others superior knowledge about your questions. Sending support your way though.

longest fab news! Don't worry about measuring a few days out, 7+ weeks with a heartbeat is terrific. So happy for you!

curtains I'm another person with a completely uneventful first pregnancy, it shouldn't affect your testing or treatment other than they assume no structural issues.
I think squiz had factor V Leiden? I'll PM her and ask her to comment if I remembered that right.

Yay longest and tanny - great news!!

Sorry I am lurking as not much going on with respect to TTC - waiting game till NHS appointment.

Curtains - on progesterone, it's fairly well accepted that low progesterone can cause mc but less accepted that progesterone top ups are of benefit, and disagreement about the best time to give them. Prof Regan has an interesting chapter on it in her book which I am due to pass forward if you're interested and want to pm me your address. A trial called PROMIS was looking into it and is due to publish this month. I was self medicating (though with my consultant 's consent) with agnus castus to boost my progesterone levels and although it didn't improve my long cycle, I did get pregnant much quicker than usual and this one does seem to have implanted a little better so far. I will never know if the agnus castus made a difference though and I know lots of people are rightly wary of it.

Congrats for those with positive scan news and sending best wishes to curtains for a better response from your doctor next time you see him. Seems crazy to me that one of the few causes that has a treatment wouldn't be treated until after first scan (but obviously I'm no expert) I definitely think you're entitled to a second opinion if he's not more receptive this time