Recurrent miscarriage support - tests, treatment, trying again - thread 8

[Bakingtins]

Welcome everyone, pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of company, information, moral support, tea or sympathy.

Can I suggest we start page 1 with a recap of where we are all up to, because my fuddled head can't keep track?

FedUp am OK, seemed to fade away over the course of the day. I wonder if it was related to pushing out a poo (tmi yuk) as 'slow digestive transit' is one of my early PG symptoms. Now in one of those phases of running to the loo and checking the goods fairly regularly. And eating beans etc' in an attempt to prevent. Not quite at the dry prunes though.

Not :( That's rough. Fx for you next month. I know exactly what you mean about not being angry with them and liking them but finding it hard to speak.
I usually have a couple of girls I tell very subtly (the euphamism "I have PMT" AKA BFN, bring me wine and comfort or "I might be pregnant" meaning I am but don't act pleased or I'll freak out) for moral support but at the moment there have been 2 bereavements, a divorce and ill health so I don't want to stress them out further. In a terrible, selfish way I'm finding it easier to help out with their stuff as a distraction (of course I would help anyway)!

squiz How many weeks are you now? Isn't it quite common to have a teeny bit of blood the day your period would of been due?

Thanks downstairs and squiz, good to know I am not the only one who finds it hard with friends. One of them is my closest friend - we've been friends since the first day of secondary school! So I know she gets it and was amazing through all my MCs. Just find I can't talk to her about it anymore as want her to be in a happy place at the mo. Right, here's to next month - think I might do dry January and be very healthy - something else to focus on! Fedup ongoing miscarriage crap is so draining, sorry you are going through this .

Downstairs yeah I was due on Thur/Fri (day 26/27) so might be. Did a digital test. Fx - twinges, nausea, tender boobs and smelling funny things in the air today so the hormones seem there still.

Not I am sure she'll understand, sounds a good mate. Funny story re FB pregnancy in friends ... French friend (different food n drink rules) went by her country's 'rules' when preggers. Poor girl copped it something awful from the smug 'perfect mums' - wanted to stick up for her but how to explain why I'm a world expert on risk in pregnancy with no kids? Also, I had to hide my eyes as even with my logical brain on it was like 'daredevil eats brie and has a small glass of red wine' fear!!!!

You lot are v chatty at the moment!

not I'm sure we've all struggled with friends' good news, if you need to step back for a bit then do that.

sqiuz glad the bleeding has settled and you have some symptoms. Keeping them crossed for you. How are you getting on with the clexane now?

Dry January is a piece of piss! dry December was a challenge!

Baking thanks for the tips. Getting a dot and about 3mm bruise, quite tiny! So pretty good! Cheers.

Dry December must be frustrating, but worth it!

So af arrived yesterday. I'm actually relieved! This was always meant to be a rest month and have been gearing up for big push next cycle. We're going to try SMEP!

Unfortunately I might have missed getting one of my blood tests done, as it needs to be taken on day 1 or 2 of cycle, and it's the weekend and I'm away from home.

I'll call my gp on Monday just in case.

Thanks for all the positivity!

Tanny best of luck! Fx the doc will do your test monday too.

Mad moment of the day: am I allowed to paint my nails? I used branded polish which is formaldihyde free etc'. Being paranoid! DH says almost all professional beauticians are women therefore if it was a big risk everyone would know. crazy!

squiz I'm a beautician so I hope it's safe lol :)

Thanks butterfly sorry I am remembering all the o!d wives tales like crazy! :)

Hi all, new to the thread and hoping to find a bit of support.
Just having mc 5 (5weeks) and so fed up. Spent literally years ttc and only managed mmc1 (8weeks). Miraculously managed DD two years ago and finally got diagnosed with thyroid probs and sticky blood. So thyroid sorted now can get preg no prob, but can't seem to make them stick. Have had 4 mc's in the past 15 months (5 in total). Got bfp just after xmas and thought this year would be different but i guess not.
Trying so hard to stay positive, and so sorry to come on here and dump all this on you guys, but i figure you might just understand xx

Hi bobsmum welcome to the club nobody wants to be a part of. It is all that's kept me sane after 3MC in the last 18m and 4 in total. I don't know anyone IRL who has had more than 2MC, but the women on this thread are fantastic.
What treatment have you been on recently? Are you seen by a RMC clinic? Is it worth thinking about tertiary referral to St Mary's or getting immune testing done?

Thanks bakingtins, and sorry to hear about your losses. The sticky blood diagnosis is most recent, but have just been told to take baby aspirin from bfp. Have just been referred for karyotyping on nhs, and that was a mammoth battle! We recently moved back to uk from overseas, my previous gynae had me on progesterone, but the consultant i've seen here won't do it, he says theres no clinical proof it does anything (!?!?).

The consultant i've seen privately here is a rmc specialist, but to be honest he seems a bit laid back and i cant help but feel there might be more that could be done.

Thats it really. I wish there was more i could do. My gp could not be less interested. I've had anti phospholipid tests, hence the sticky blood diagnosis. Is there something else to test for? How/why could i get a referral to st marys?

Hi bobsmum sad to see you hear, it's a great group though and am sure you will gain lots of support from it. It's been a great help for me :)

Hi bobsmum welcome. Sorry for your recent loss. Have you been put on heparin (usual brand name "clexane") as this AND aspirin seems to be the usual meds for those of us with sticky blood. I would push to see a clinic like st Mary's in not or just mention it to your specialist. I believe aspirin alone gives a 30-40% chance of success but with heparin it is higher, like 70%.

...the general consensus on sticky blood is progesterone doesn't help that condition. But clexane DOES and is the NHS approved medication!

Aaargh, wrote a massive reply and lost it.

I'd agree with Squiz that you need to ask about clexane in addition to aspirin. I'd also make sure that your thyroxine is increased as soon as you get a BFP and that your t4 and TSH are being monitored closely.
Progesterone is controversial. I know Prof Regan from St Mary's says low progesterone is a sign, not a cause, of a failing pregnancy. It's a standard part of support for IVF pregnancies and there is evidence it improves outcomes in that situation. Prof Quenby thinks there are a population of women for whom low progesterone in luteal phase is an issue and she prescribes it from CD21 to help with implantation. I think everyone agrees it does no harm, though.
There is a pretty standard NHS work up which includes thyroid and APS testing, day 2 FSH/LH, poss day 21 progesterone, full blood count, karyotyping for you both, mid cycle ultrasound scan for anatomical abnormalities and poss hysterosalpinogram, genetic testing of future losses. St Mary's do some additional blood tests, particularly for clotting issues, and there are a few private centres testing for immune issues which are not routinely tested by the NHS.
You can be referred to St Mary's by your GP if you are in their catchment, or by a RMC/gynae consultant from anywhere in the UK, or you can self refer as a private patient. There's a really good documentary about RMC investigations at St Mary's on YouTube, called Waiting for a Heartbeat. Have some tissues handy!
I'm not a patient there but lots of the posters on the thread have been and only have good things to say about it.

Welcome bobsmum sorry you find yourself here and so sorry for your losses, you will get lots of advice and support here.

I'm really struggling with feeling anxious at the minute it's over 2 weeks since my last scan and I'm worrying that I don't know if everythings ok, 14 weeks now but obviously can't feel anything yet although I do have a small bump and I'm still sick as a dog vomitting 2-3 times a day. I have an app with the consultant in 10 days so hoping I will get a scan then I'm just terrified. Baking I know you are further than me but how did you feel at this stage inbetween scans?

for butterfly i'm also shitting it (not even had one scan yet) apart from tiredness, eating like a horse and bad skin I am not having sickness or anything else so I'm really worried it's all going pete tong!

Butterfly ... Same as downstairs I've been poking my boobs to check they're sensitive and all sorts. So stressful.
Downstairs quite a few pregancies don't get sick so you might be aa lucky one with regards to that! The skin/hair/hunger sounds like the hormones are all firing away! :)

downstairs and squiz it's scary isn't it I was constantly poking my boobs in the early weeks still do actually I've been sick since week 6 or 7 but I think it's 50/50 I know lots of people that haven't had any lucky cows. I thought that once I got past 12 weeks I would relax a bit but I haven't I'm way past where I've got to before but I just think it's gone wrong every other time why should it go right this time, stupid I know but I can't help it. I don't even like saying the baby. or anyone else to say it really it makes it too real, I'm still constantly knicker checking and had lots of twinges the last couple of days so that doesn't help, sorry for the rant but I need to tell someone how I feel, how do I get past this worry I want to at some point be able to enjoy this pregnancy?

Hi butterfly I did wonder how I would make it through 7 weeks without a scan (had OSCAR screen at 13 weeks) but I heard the HB at 16 week MW appt and have felt movements from about 17 weeks. I'm still worried there will be something terrible found at 20 weeks but at least I have some reassurance baby is in there. Basicslly, we're not going to relax until they are here.

Thanks Downstairs x
Squizita and bakingtins, interesting what you say about heparin... I think the gynae only out me in asparin because i'm don't actually have anti-phospholipid (no lupus antibodies and no elevated IG(g)) i only have high IG(m) which can be a precursor to high IG(g) which is a bigger risk factor for pregnancy, but still makes blood sticky, apparently. I know he spoke with a haemotologist, but i have been wondering about seeing someone more specialist in the field.
Re thyroxine, its a nightmare to get gp or consultant to take more than a passing interest, they just act like its totally irrelevant, and i think i know more about it than they do! Grrr!
Am off to see gp armed with your list of tests, bakingtins....!! X

Hey butterfly, i never relaxed for even 1 second with DD. I wish i had been able to! Looking back i am so jealous of all those women who breezed through their pregnancies, having named their babies and bought baby gros at 12 weeks (i didnt even buy nappies until we bought her home from the hospital). Frankly, being pregnant sucked. I hope you do find a way to relax and enjoy it, but at the end of the day, you get to make up for all the stress and worry once you get them home safe and sound xx

The thyroxine definitely is not irrelevant. I have a good friend who had over active thyroid, had radio iodine in order to TTC then was on thyroxine and lost 2 babies because her thyroid was not well controlled. When she eventually saw a specialist she was given an increased dose to take from a BFP and thyroid monitoring every 2 weeks to keep TSH in a tight range. Next 2 pregnancies were fine though her son was born with thyrotoxicosis and needed monitoring. He was fine after the first week or so. She thinks with hindsight that her daughter had it too but nobody recognised it.