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......

My sickness didn't really kick in till 9 weeks ish. At 6-7 weeks I was getting the odd dizzy spell but no nausea as such.

My nausea kicked in gently at first, so travel sickness bands helped, and yes, by 8-9 weeks was feeling pretty rank. The taste in my mouth was vile.

In previous successful pregnancies I chundered loads, all day every day, but this time I only threw up if I ate late or was really over tired. The last of the nausea has yet to leave me, again when I get it really tired, but I haven't been sick since I was about 16 weeks.

And I agree, eating a little bit very frequently helped, as well as not sticking to any one thing. Drinks were hard work, as everything tasted yuk, but I did quite like a slice of lemon in hot water for a while.

God, we put ourselves through some shit!

Yes, drinks are the worst here too. Bought myself all sorts of cordials and herbal teas but can only face water most of the time. I haven't actually thrown up yet though, and didn't with dd, but feel pretty close much of the time. Bit better the last couple of days though.

just Sickness really can be different in different pregnancies, on different days, and definitely for different people. Think of the variation - no symptoms to hg. In regards to constipation, for the whole of my pregnancy with DS I tried to use one hand to..erm..hold the baby in..quite ridiculous of course. Tomorrow you are one day closer to the next scan. I know I would be the same, but hang in there x

tanny glad bubba has decided to wake up,

NK cell results back via e.mail (that was quick). They are 6.1%, 'borderline'. I don't know what to think. Its more in the middle-ish, more unknowns. Not quite normal - in which case the whole NK thing would definitely not be the issue, and not quite high enough for them to definitely be the issue. Or possibly definitely.

Sigh. Will do a list of questions for the phone consultation next week.

Also sorry to the upduffed ladies who are feeling so unwell..it can be utterly grim. X

Bootles, I hope they have something sensible to offer. Certainly I was put on prednisolone as I was pg before my results came back, and mine were much lower than that. And the progesterone/clexane combo seems to be getting results too, so I have high hopes for you...

Do let us know the plan x

Thanks tanny. Yes I am grateful to have the results before any potential pregnancy - must have been an absolute nightmare for you not to have known results when you got a positive.

Am just on my way to work and forgotton bloody cyclogest this morning..forgot it yesterday morning as well..this is not good. Am in TWW, though not much effort made this month so pretty sure nothing's going to happen this month but forgetting the meds really stresses me out. Argh!

Bootles. Glad you got your results. Know what you mean about more uncertainty but I suppose it's better really not to have a very high reading as it's more likely to respond to treatment? From what others on this thread have said the Coventry profs aren't annoyingly cautious. They will probably prescribe you the meds if they think they may help. Your mcs had lots of different causes didn't they? You sound like a complex case but one where a bit of something different in terms of meds and a dose of better luck might well get you home. Good luck!!!!

I wonder if anyone could give me a quick run down of the different medications that can be prescribed? My brain is getting a bit fuzzy with it (and confused by brand name and actual medicine...) Trying to get it straight in my head before I go into the testing and consultant stuff.

Flen, I'll make a start and I'm sure others will add to the list. Progesterone is aka cyclogest and heparin is aka claxane or fragmin. These are the brand names.
Bootle, glad you got your results, I'm sure they'll look after you at Coventry.

Flen this isn't my forte but I will give it a go and others can correct me and add to what I say.

I am on cyclogest progesterone pessaries and 1200micrograms of folic acid (this is three normal tablets) but nothing else, prescribed by st mary's. Progesterone helps thicken the womb lining though opinions differ as to when you should start taking it. Due to this difference of opinion i didnt start till 8 weeks, though while ttc i was taking a herbal remedy called agnus castus which is supposed to boost ptogesterone. folic acid increases blood flow to the uterus.

For clotting disorders there is aspirin and heparin. The former is sometimes prescribed on a just in case basis but should be avoided unless you have a clotting disorder as can interfere with implantation. I think, though I am not sure, that clexane injections are heparin. Coventry prescribe these to everyone as they can help with the placenta formation as well as clotting.

Predisonole (sp?) Is a steroid prescribed by coventry for high nk cells, which is effectively an overactive immune system. The private doctors in London prrscribe more aggressive treatments for tjis but tbh I have forgotten what they are called.

Then there is thyroxine for low thyroid function and metformin for insulin problems. Sometimes metformin is prescribed for a pcos diagnosis alone but my dr wouldn't prescribe it for me as my fasting glucose levels were ok.

Can't think of anything else right this moment but others are bound to chip in.

Morning ladies. I am feeling like total crap, which is doing wonders for reducing scan doom and my sanity although still crapping myself. Feeling generally queasy and knackered, tho still not as tired as I would expect, but i am choosing to believe this is the thyroxine working its magic. Off to spend the day with mother who doesn't know I am up the duff and I don't want her to, but as she is a booze hound and I won't be joining her she may well rumble me. I am 8 weeks tomorrow.
bootles not sure how I would feel about your result. Can the test be repeated to get a clearer read or will they treat you regardless?
longest hope your scan doom is manageable. What day are you in?

Must be off now. Fun and games.

Yeay belle! Your mum sounds a bit like mine. My scan is tues. Is yours wed? Not too long now! X

Yep 10am Wednesday. And just to add a new ingredient to the mix I think we bought a house yesterday. Not sure if it was a great idea. If it goes tits up I may not want to proceed, but it is a fab house. Hmm mm. I thinK they call it leaning in.

Oooh exciting, congratulations! Whereabouts do you live? X

flen I was on 5mg folic acid, recommended by my local consultant for everyone with RMC (also for anyone with high BMI) then the Coventry protocol of 400mg progesterone "cyclogest pessaries" twice daily ( given from CD21 to improve and maintain womb lining until the placenta takes over in week 10) heparin injections ( clexane or fragmin, used to treat clotting disorders or by Coventry for their protective effect on placental cells) and prednisolone tablets 10mg a day (to suppress the immune system or supplement local steroid production, for high NK cells)
The medications used in London for immune problems include intralipids, IVIG, humira. If you want to follow that line of enquiry check out a thread on conception called "TTC or pregnant on pred"
In my last unsuccessful pregnancy I was on progesterone but only from BFP and 75mg aspirin, despite normal clotting tests. I now know both Coventry and St Mary's would advise against this in the absence of a diagnosed clotting disorder, it can interfere with implantation.

That's exciting belle. Congrats! Also good to have something else to focus on maybe. Not long to go now until scans. Keeping fingers crossed again for you both x

Hey all, now I'm starting to panic! I've been put on 200 progesterone pessaries once a day and asprin. Should I be kicking up a fuss. I asked if they should be 400 pessaries twice a day and the hospital said they hadn't heard of that being used as treatment? Should I be resisting asprin and asking for something else instead? We haven't had any tests as we got a BFP the week before we were due to go to clinic

boozle one of the hardest things about all this is that all the experts disagree slightly (sometimes completely) with each other. Women succeed on all sorts of different protocols without even being sure if it's because of, or in spite of, the treatment they are on. The large scale trials that are starting to happen (promise, tablet etc) may give clearer answers. I think now you are pregnant you need to stick with your protocol, cross everything for a good outcome, and as far as possible not worry. Hopefully you never get as far as needing tests, but if you do have them that's the time to have any discussions about changing protocol for TTC again.

Thank you everyone, I am compiling a list so I don't get too confused...

Belle great news about the house! We have also just bought one. Nerve-racking...!

Hey boozle great words of wisdom from ba king. The evidence for any of these treatments is not rock solid, so you are likely to be treated according to the preference of your consultant. It might be best to just trust your team for now, or you could drive yourself mental.
Still waiting to hear if house offer has been accepted, moving from East London to hitchin, so quite a big step.
Had quite a nice day with mother. Managed to disguise lemonade as g&t. She did ask what was going on baby wise but I think I covered it well.

Boozle, I echo what Baking said. Fx your plan is doing what it needs to do for you and you never need further tests. Hang in there.

I was one 200 morning and 200 night for cyclogest...

I just really want it to be ok. I'm going to see the registrar tomorrow so will speak to them tomorrow about potentially upping my progesterone dose. Do you think I should ask about anything else? I'm only six weeks and my pregnancys fail at 10 weeks as a general rule so I don't think its too late to put extra things in place?

I wonder when the promise progesterone trial data will be published (they said end Oct '14). if that comes out soon, push it under their noses (assuming it says 'yay progesterone'!). Once prof Quenby said to me that st Mary's aspirin if positive teg test was a bit like their heparin plan. She gave the impression they do basically the sane thing in general terms. Its the just in case treatment preconception use she sounded really against. I was on 200 mg cyclogest twice daily but prof Brosens increased it to 400 mg twice daily when I had that spotting. Hope your consultant is feeling open minded, good luck. x