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'.

I missed my repeat teg as was in oz. To me my case didn't really fit with a clotting disorder though and my results showed the opposite if anything wasn't too worried x

just congrats hun! I'm SO pleased for you!

Fantastic to read your update just I'm so pleased you've got that elusive BFP keeping it all crossed for you.

We've had a completely mad day for my oldest's 8th birthday party - the house over-run with spy recruits, complete with ticking bomb cake, fortune cookies and code breaking. It made me think that last year I was doing pretty much the same thing but absolutely cacking my pants about being in first trimester. What a difference a year makes. Feeling blessed, sending blessings to all of you in those worried early days.

just I feel a bit more noodles than bootles most days!

tiny hope your week goes past as fast as it can.

Really must ring epu/GP on Monday and see if I can get hold of cyclogest. tiny I think you were talking about this a while back, but my prescription from prof Brosens says 200mg twice a day - is that what everyone else had? I didnt have time to fill the prescription in Coventry.

I have also wondered about how it works with the RMC when under Coventry.

Bootles yes 200 in the morning and 200 in the evening.

And ahem back passage worked better for no leakage

Bootles, the way I'm planning to implement the Coventry plan is that I asked my GP to write to my local RMC clinic (who already know me quite well as I was there a lot after mc 2) and explain the situation with St Mary's vs. Coventry and sent them the results and plan letter from Coventry. The consultant there is now prepared to treat me there under the Coventry plan. I got a very long letter explaining things I already knew about aspirin still being 'in the book' as guidance, how taking cyclogest can 'mask' an MC (basically meaning that a mc that would have happened anyway would be a mmc, there is no known suggestion that cyclogest can cause mc, and people still disagree about whether it prevents them - come on PROMISE trial results!!!). So, with all these disclaimers in mind, I now have everything in place in Stoke Mandeville. I don't really like their EPU, but that's really more for psychological reasons, and because they aren't as slick and quick as UCLH (believe me, any sign of trouble and I'll be running back down there for a scan 'while you wait'!).
I was thinking about the St Mary's repeat TEG and, actually, if they do that between 6 and 7 week, and I get my early scan )and it's all where it should be) and get my heparin at about 5 weeks, then the TEG would be useless anyway as they heparin would 'cure' the problems the TEG was looking for, so it would not be accurate anyway. So, I guess, as long as the heparin is in place, the TEG will be surplus to requirements. Does that sound right?

I'm glad I got this all sorted before getting PG, and Prof Brosens is only a phone call away, too.

Funny to think, this time 3 years ago I had just fallen PG for the first time after one month of ttc. What a hell of a journey!

And I am taking 200 mg twice a day for cyclogest.

bootles my RMC offered me monitoring in any future pregnancy. When I got my referral report from Coventry I sent them a copy, then phoned them as soon as I got BFP. My GP prescribed the meds recommended by Coventry, RMC would have done it had GP been difficult.

The issue I found is that my GP is not allowed to prescribe the injections due to local health authority rules - I think they are different in different areas. She was very helpful in finding someone willing to proscribe it, though.

Also important thing that Prof Quenby told me on the phone. Tell GPS and consultants that Coventry is "self funded NHS" treatment and it's not private as some GP s frown on private treatments

Hello ladies..Aoifebelle as was here, new name but same old shit.
My history
2mcs
1 medical termination
Last month faintb bfp, period came two days later
This month bfp again, currently 4+5
Currently on 100mg thyroxine, but tsh levels remaining stubbornly high.

I am on and off these boards like a yoyo.

In a nut shell, I seem to get pregnant at the drop of a hat, but can't hang onto them.

I am now driving myself bonkers symptom spotting. I veer hugely between feeling really pregnant and being convinced it is all over. I think this might just be the toughest few weeks of my life to date. I just turned 40 so this may be the last time round for me.

Hello to all the regulars and the newbies. just I hope all is plain sailing for you. cloudjumper we seem to have synched in the past, keeping fingers crossed for your bfp.

Hi Belle
Go to the GP and ask to up the thyroxine. I am now on 150 MCG daily and before pregnancy was on alternate 125/150

Hello belle. Wishing you all the best this time. Xx

Fingers crossed this is the one belle. Hope you have lots of local support for the first difficult few weeks.

hi Belle, hope this is the one! what treatment plan are you on? All the best.

Hi all thanks for the goodd wishes. No treatment plan as such, just thyroxine. Have already upped dose from 50 to 100. Booked in for early scan.

It seems my symptoms are much less in the morning, or when just mooching around. Now on way to cinema with sister boobs are sore, unquenchable thirst has returned and I just feel a bit gick. All wonderful. Going to try and ration the pregnancy tests, 2 per week max!

Congrats aoife hope this is your sticky one. Def get your thyroxine increased ASAP and make sure Tsh is checked frequently. I have a friend who had 2 MC thought to be due to poor thyroid control, so unnecessary.

Wow. I go away for the weekend and look how much stuff happens!

Huge congrats on your BFPs just and belle! Amazing news.

to everyone else. Hope you've all had nice weekends. I've been wakeboarding for the weekend (which I was rubbish at!) and my entire body aches SO much!

Thanks for the welcome and congratulations to just and belle sending lots of sticky vibes your way.

Feeling really low today. Bleeding has pretty much stopped now, which I suppose I should be glad about, but for some reason I feel worse than I have in the last few days. Flat and empty.

Currently waiting for a call back from the nurse at the EPU who is speaking to the consultant to see if they think it would be helpful to test the tissue I have collected. I couldn't really care less whether the consultant thinks it would be helpful, it would be helpful to me. The consultant didn't seem to think there'd be anything gained from testing after my MMC (my 3rd out of 5), but agreed to do it anyway and it revealed a complete trisomy. I found that helpful. Fingers crossed the consultant is in a gracious mood today.

Oh and thanks for the heads up about the aspirin longest and bootles. I have been told not to start taking it until after a BFP though and as I understand it that wouldn't be until after implantation as that's when you start producing hcg. Have I got that right?

Welcome back belle! New name, new luck! Fingers crossed that this will be your sticky one!

I wish I could say that we are synced again, but I am definitely out this month. Ovulated really early again and spectacularly missed the boat. Partly because I just could not muster any energy/motivation/mojo for dtd, so entirely my fault
And from the looks of it, nothing is going to happen next month either, as I will be away for a long weekend to visit my sister (without DH) when I am meant to ovulate
Not sure what is going on, my ovulation seems to have come forward quite a lo recently - I always used to ovulate around CD13/14, but the last few cycles, it was on CD10/11! I've also started spotting in the days before AF arrives, which I never used to do, so I am struggling to pinpoint CD1 (I mean, when is it just spotting, when is it AF? CD1 used to be very light AF for me, before hitting on CD2), which does not help.

Argh. Is it the weekend yet?

Thank you everyone for the tips on getting and using cyclogest, and how to make it work with the different consultants. I already know prof Regan won't prescribe it for me, so its gp or EPU. It is so helpful to know how everyone else negotiated it.

A bit of a late comment but baking your b.day party's sound fab!

belle great news! Keep us updated.

Imnot sorry to hear you are feeling so low. How on earth can the consultant think its it NOT necessary to send off products?! Am angry on your behalf, its obviously really useful to know to try to work out what's going on. Grrrr.

Aspirin later..late for work!

imnot Why on earth would your consultant go against the NHS protocol that calls for testing, once you've had your 3rd mc?! Am on your behalf. It is bad enough that you have to endure this 3 times, before anything is done at all, to then have it questioned as not being 'useful'. What planet does he live on?!
I hope that your EPU nurse can manage to convince him to get the tissue tested. In the meantime, look after yourself, the emotional fallout after a mc is so unpredictable.

just How are you! Have you spoken to your consultant yet? You mentioned that you will get an early scan, any news on when that will be? So excited for you!

Hi imnot. Sorry to hear you are feeling low again the last few days. Are you still taking preg vitamins? I had stopped taking mine after my m/c last week as I couldn't even look at them. The day after stopping, I started feeling more depressed/teary again. Then I read some advice on here about them helping to regulate your hormones and so started taking them again. I felt better again the next day. Of course I can't say for certain that's what it was, as your emotions are understandably all over the place, but I feel like it helped me for now.

Hope they agree to test the tissue. That makes me so mad that they would suggest otherwise. It must help with closure for you, as well as potentially helping to work out what's going on, so can't see why they would be so cruel as to not do it. Grrrr.

Thanks for the outrage bootles and cloud. Gave me the confidence to be a bit more pushy than I might otherwise have been when the EPU nurse rang back.

Apparently the consultant said that from my description and my dates (I was only five weeks) it doesn't sound like there's enough for them to do tests anyway. So I asked her if it was worth bringing it just in case. She said that if I still wanted to bring it in they could at least confirm whether it is pregnancy tissue (I've done this five times now, I know what it is ). So I asked if the lab would do the genetic tests anyway if it turned out there was enough there. She said not without a request form from the consultant, but after a little more pushing from me she has promised to get him to sign one.

I'm a little annoyed that I had to push for it again, but if nothing else it's lifted my mood a bit. I'm proud of myself for standing my ground and being proactive when all I really wanted to do today was crawl back under the duvet.

Small steps!