Recurrent Miscarriage Support - tests, treatment, trying again - thread 9

[bakingtins]

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

Can we start the thread with a recap of where we are all up to again, please?

Ignored = diagnosed clotting issue.

Hi Willitbe, I was told by st Marys that the treatment for a positive TEG test when pg (following normal when not pg) was treated with 150mg aspirin, no herapin. So sorry for your losses. Good luck.

Tanny, I think you're right to call st Marys or email Yash asap. Hope they get you sorted out asap.

Mid 2ww. Feeling like it will never happen...

Tanny - I started heparin when I got my BFP, and will have to stay on it until the end, increasing the dose after 20 weeks (that's what the haematologist told me last time). Also on aspirin, but only 75mg at the moment. But for me, the heparin is because I had a DVT a couple of years ago, nothing to do with the mcs (but I'm hoping for benefits regardless ).

Def tell your GP or whoever is looking after your bloods that you are pg, the hormones have a big effect on your blood features.

Agree that the guidance is confusing. I do think that because st marys are doing a lot of research in relation to clotting etc that they are a bit ahead so I would follow their guidance if poss.

I'm on heparin since 6 weeks for clotting issues (factor 5 Leiden). I was also on aspirin for last pregnancy and advice from my local consultant. But st marys are saying to wait for the results of the teg test to decide whether aspirin Is recommended. So I'm waiting. I don't think it really makes a huge difference, but of course we need to work out what the best approach is for our own circumstances to Maximise our chances.

Hi, I've had 3 miscarriages in a year and today was my first appointment after them being changed and cancelled every month since October. I have to say the experience was awful. We were vetted by the consultants assistant before hand and was really emotional during this. At one point it didn't look like we were going to see the consultant at all!
Had bloods both me and my husband today in total 3 and half hours there. Have a beautiful 6 year old daughter but it's really hard.

Hi. I've been prescribed heparin in a last ditch effort to save an unviable pg.

I've looked back through to try and find the advice on injecting but haven't had any luck.

Baking, Squiz, anyone else?
Trying to stay strong but want to curl up in a tight ball...

Tanny fx for you. If they've given you the clexane there must be some hope?
I was shown how to inject back in October for about 1min, so relied on these 2 guides when I actually got pregnant I used these 2 to help me inject:
www.stockport.nhs.uk/documents/PIL/34646_Med44.pdf

Thinking of you.

KMM sorry to hear your story. Where are you being tested?

Just back from my hospital appt. doctor declared that I should start reducing pred immediately as I am 9 weeks now, that without a test for uterine NKcells that pred was not even recommended (I haven't even had the blood tests for it, but she didn't ask if I had had any NKCELLS testing!!!) so she was dictating on her personal opinion only. She said I could stop the progesterone before 12 weeks, stop the heparin at 12 weeks and stop the aspirin at 12 weeks.

I said I had had a positive TEG test, her reply well that is a controversial test, and wrote in my notes that there was "no clinical reason" for continuing the aspirin, but and that I was advised that continuing upto 34 weeks with it was "at own risk". So she did give me a prescription for 75mg daily dose (not the 150mg dose at Mary's recommend) but that was it.

Fortunately my chemist does not not how many weeks I am and previous prescription says pred, progesterone, high dose folic acid and heparin til 12 weeks. So I will be continuing until after my 12 week scan with all the med's. I am ignoring the doctor to stop the pred now, I will do it at 12 weeks.

On a different note has anyone had the "harmony" blood tests, or know where and what cost it is?

Tannyloo, I just followed the instructions on the packet initially on how to inject, but others here gave advice on, not rubbing afterwards, injecting very slowly, and delaying before removing needle. It all helped avoid bruising.

Glad to hear they are doing all they can for you.

Willit I am encouraged to take aspirin and they don't even bother giving me a prescription (it is so cheap) so if you want to keep taking it, do! Can you request a second opinion? She sounds very opinionated and her idea of 'contraversial' seems very out of date. Even my local ob/gyn overworked docs at my local A&E knew of all the tests and wrote me a note to get me referred for them.
Are you outside a big city? Just wondering as her reaction seems odd.

Will it my friend did harmony at the feral medicine clinic in Harley street.
I will do it if I have a bad NT + bloods.

Hi Tanny I am sorry to read on the other thread about your scan today. This whole process is extremely upsetting and exhausting on so many levels. I do believe that there is still hope and I have everything crossed for you. Re: the heparin I stick to alternating between the right and left of my stomach. I also rub ice on the area before hand and squeeze the flabbage before injecting. Sometimes it bruises sometimes it doesn't.

Let me know how you get on - I'm thinking of you.

Its interesting to read about the coming off meds discussion. This is one of my biggest thoughts at the moment.

Mr Shehata has me coming off my progesterone at 16 weeks. Dunno why that is. I have been told to stay on aspirin 75mg for the rest of the pregnancy (right up to birth). I am PROBABLY going to be on clexane for majority of pregnancy.
I am not sure when to stop the 5mg of folic acid. Any ideas? Should it be to 12 weeks?
Am also on prednislone and I know I have to ween off at 12 weeks, but is that to ween off BY 12 weeks, or AT 12 weeks.. Its all confusing and being a RM sufferer with no live children its hard to work out whats for the best. I feel like one false move and I could end up making a detrimental mistake.

willit my friend got diagnosed the TEGS positive and was told on next pregnancy to take 150mg aspirin and no heparin.

Hi baking directed me here. I'm having my third miscarriage in 10 months.

I have a scan tomorrow, does anyone have any advice about questions I should ask at this point? Am I likely to get tests or will I be referred first?

Also I have not yet passed any "products" if I do before tomorrow appt., should I try to collect it and how? Will they think I'm weird if I turn up with it?

Sorry for all the questions, I'm just trying to get my head around what happens next.

Similar position to you halfbaked, but second in five months.
Scan tomorrow and not passed products yet. Plan to pop them in a small jar in the freezer if they pass tonight. If it's odd, too bad, but if I don't take them they can't have the opportunity to test them.

Think I'll ask for the meds as cant have any more time off work. Will also ask about tests as I'm 37 :(

HI Halfbaked I am sorry to read you are going through this.

Personally, if you can manage it - i would try to collect and bring it with you tomorrow, in a clean container (with lid), as this is your third you are fully entitled to testing.

Tomorrow I would ask what their referral protocol is and what they test for. How long referral's take as well. That way you can (depending on where you are based) decide if you are happy with what tests they go through and f you are looking at getting any additional ones (i.e. NK CELLS). Books wise its worth reading Lesley Regan's miscarriage book. She is NHS mainly but I found this book if anything a real comfort and answered many of my questions. Again, sorry to read this is happening and I hope you get some answers soon. x

Hi healthyhippo sorry to read this is happening to you too. I fully agree to take along with you if you can manage it. You are entitled to testing. x

Thanks for your messages. Squiz those were both more useful than "the pharmacist will tell you what to do"!

First one done.

Thanks Healthyhippo and Tumtimes useful advice, thanks for the book recommendation too.

to you healthyhippo

It will probably feel a bit more real tomorrow. Previous miscarriages were fast, this is dragging on and I feel strangely detached from what's happened.

tanny sorry you didn't get more positive news today. What did the scan actually show? My best plan with the heparin was bag of peas on the skin, stay away from midline, lower down nearer hips was better, stretch out the skin and slide needle under at 45 degrees, inject slowly and allow product to disperse before withdrawing the needle, don't rub, ice the area again afterwards.

halfbaked and hippo glad you came across to join us but sorry for your reasons for being here. We're the club nobody wants to join, but we are all lovely despite that. I collected products from my 4th miscarriage by peeing/passing through a sieve (sorry for TMI) and took products in next morning in a clean container (stole a pot from work but a sandwich box etc would be fine. I wouldn't freeze them unless you've specifically been told to do that, the freeze-thaw can damage cells. I hope you both get some answers from getting products tested.

willit you need to have stopped the pred by end of first trimester or it can interfere with hormone synthesis necessary for sex differentiation, but it's really important to taper down, not just stop. I was told to taper from 10 week scan (from 20mg to 10mg to 5mg a day) and I stopped at 12 weeks. The placenta should have taken over by 12 weeks so you can also stop additional progesterone at that point - I did a few days of one a day using up what I had as it just felt a bit harsh to stop dead. I stopped clexane dead on 12 weeks (but I don't have a clotting issue, if that were the case it's important to continue) and also stopped the high dose folic acid, continuing with pregnancy vitamins that just has the 400mcg in.

kmm welcome. Sorry for your losses and that you didn't have a more positive experience today. I hope something good comes from it in terms of some answers. I had most of the testing done by my GP having seen a consultant privately, by the time I got to the RMC clinic they had nothing to offer me except the information my baby was perfect which was a real low point for me. They have been much more helpful in my subsequent pregnancy....

Baking thanks for the injection advice. The scan showed a irregular shaped sac with a possible shadow of something inside. It was about 3x1.5cm.

The pg test was the killer though. No line in three mins and only a really feint one at 5 mins.

So sorry, Tanny

There has been some talk of TEG tests on here recently and maybe someone can answer a question about it. In my increasingly pessimistic mind I am worried that the positive TEG and treatment of 150mg aspirin comes too later for that pg, and would only be effective on the next pg once its a known issue. Rationally, I know hope this is bonkers, but its the impression I'm getting. I haven't been able to get an answer out of St Mary's. Mind you, its academic at the moment in the absence of a bfp... Thanks for any advice.

FeTal medicine, not feral! Bloody phone

www.fetalmedicine.com/fmc/

I'm sorry tanny it's shitty to be back in the limbo again. Have you got another scan booked?

Hi everyone, sorry for the silence of late. Been trying to sort my head out a bit. healthyhippo and halfbaked I am so sorry that you find yourself here but I hope you find it as supportive as I have done. tanny those limbo scans are awful and just shit. Take good care of yourself and hope you have a follow up booked v soon. Hugs.

Sorry, rant alert - so I've been trying to find out why I've been having these 3 day AFs and short cycles. After my GP basically laughing it off St Mary's did agree to see me and I had a scan which showed that my lining was only 5 mm on day 25 - think it should be over 8. Hence weird AFs. Now back on the possible scarring issues (from ERPCs) even though I was told that was all fine back in Sept. Grrrrrr. So that needs to be investigated again! Apparently it could also be to do with my low BMI (need body fat to produce oestrogen) so told to put on weight which I am sure is good advice as lost quite a bit recently. Then did the day 2-4 hormone tests as a precaution and got the results yesterday - no explanation at all. But from what dr Google says it looks like I could have an ovarian reserve issue. Interesting when I was told in the summer that I fit into the 'super fertile' category as I got pregnant v quickly all 3 times but guess the last time I conceived was 10 months ago so maybe things could change? . So now I am totally confused and freaking out! I've tried to get them to call me to explain the results but no luck...Am I wrong or is it odd to send a patient results with no explanation? I would have thought that the tests would be repeated next month but don't know where to go from here. Totally feel like giving up to be honest. Sorry, rant over.