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......

Woooo hooooo longest. You had us all worried there lady. that all sounds amazing and free harmony to boot. I might hot fooot it to the whittington.

Yay! Longest!
Thanks Belle, I think you're right. I still feel awful for spoiling her evening.

Phew longest glad it was all ok!

just you did the right thing giving her a bit of time/space to get her head round it. I'm sure she will be pleased for you, it's the "waltzing through pregnancy without a care in the world" that is difficult.

Yay longest and baby long! Brilliant news! So so pleased, we've all been getting a bit twitchy

Just I agree with belle, its different when you know what people have been through, and telling her now was the right thing to do, so she has time to process it before the weekend.

boozle. I am sure you're right. Know you must be worried though. Hugs. girlie that just adds insult to injury doesn't it? Mention to your gp i reckon, or to your rmc. Good luck cloud! just I agree with what everyone else said. Good on you for being a sensitive friend.

So I am going to force myself to be positive from now on! Am sure there will be wobbles but everything was fine with dd so there is no reason why it can't happen again, right? I will start crossing my fingers and toes for my "friends on the thread" as I refer to you when I am talking to dh.

:-)
Great news.

That's great news Longest. Whoop whoop!

march how strange, and also reassuring! They did not give my cyst a name, but I wonder if it is a similar thing. I have had cysts on scans before, which previously led to a laparoscopy to investigate, but it didn't find anything. They said that cysts can form and resolve by themselves. Do let me know how your bloods go next week.

boozle having been probed by a sonographer today, I am guessing that just shifted stuff around. And I am keeping my fingers crossed for you.

longest Yay!And what is harmony?!

just I agree with what everyone has said. I think it's the sensitivity and understanding that matter.

longest that's fantastic! Really great news xx
And thank you for your thoughts on my NK cell results - I like your thinking.

girlie and flen sorry you are having to hold off TTC. Its so frustrating I know, but try to see it as a restful break from the process, really hard though. I guess speak to your consultant too..St.Mary's RMC said if I got pg during testing time it wouldn't be the end of the world - though for some you have to be not pg.

boozle its just a minefield with the differing opinions on the meds, hope you get something sorted. Trouble is there is no set protocol..yet.

cloud fingers crossed for this month.

Sorry to anyone I have left out...

So had my call with Prof Brosens this evening. He said 6.1% is definitely a positive result for high NK cells, and it's NOT borderline and that he has to tel! Kerri to change it on the generic letter. He said 1 or 2 people out of 10 who go through the clinic have a positive result so most people's levels are much lower than mine, and that it is a very stringent test. So its predniso!one for me from bfp.

For the heparin discussion earlier: he said its not given until a scan confirming a pg is in the right place, because they need to screen for ectopics, AND because it's not really effective until 6 weeks. (Ruptured ectopic = lots of bleeding = worse bleeding if on heparin)

My concerns are:
1)Prednisolone in pregnancy freaks me out, even though I know many of you have been/are on it,and that its a pretty safe drug in pg, it freaks me out anyway.
2)The whole story is long and complex, but I have just changed my GP, and would also be under a different EPAU (the old epau has all my notes, would be sure to scan me at 6wks etc etc)
3) Have what I am sure is an evap line today, CD 27. Stupid brand of test I have never used as ran out of the internet cheapies I am familiar with and can read with certainty. How stupid of me not to be stocked up!
4) what if its not an evap line and I don't get the prednisolone quick enough because I have to argue with new gp??!! I always always test from day 24/5, but not this month as I'd O'd late and DTD a bit early and not that close to the the time (well about 2 days off I think)

Sorry for a really long me me me post, I'm in a bit of a panic and don't even know if I'm pg or not. Others on pred...when did you start it?

Great news longest! I think we've all been thinking of you today!
Sorry to hear that some of you lovely ladies are having challenging times at the moment, I've been lurking a bit as an just in limbo waiting for appointments and surgery on my cyst at the moment! Got no news either way...Waiting is rubbish!

Bootles Thank goodness for straight talking consultants! I know it will take some getting your head round but take heart from a diagnosis of a treatable condition.

And wooooaaaahhh on the 'evap line'. I honestly have never had a true evap line that hasn't developed into something and I must have poas approximately 100 million times. Others on the thread have been through exactly your stress of getting the meds in time but all have managed it. Good luck!!!

Bootle, I second what Longest said. Mine started as an evap line this time. Get a digi tomorrow! Good luck. Prof Brosens is excellent at communicating with you, even answering emails on a Sunday. I'm sure they'll get your prescription sorted. I showed all my Coventry letters and emails to GP and took them to the EPU, too, and for them to accept and follow the plan. Hopefully you will be able to do the same. Good luck. x

Also, cloud, hope you're giving it your best shot fx it works this month.

Ps flen Harmony is a top notch blood test that gives you a much more accurate assessment of whether the foetus has a chromosomal abnormality than the combined test the nhs do but it's normally only available privately, though this trial is because they're thinking of bringing it in on the nhs.

Boring meds q for tiny, Tanny or baking. When did you stop taking your cyclogest? Dr who prescribed it said something a bit odd like 'I want you to take this, even if it is only for 12 weeks'. Nurse who discharged me from st Mary's said it's normally till 16 weeks and go could give me more if they felt I needed it. I have about 10 days' worth left. Seeing gp tomorrow for flu jab but expect I will have to insist if I do want more. Do I? And if not, do I stop the dose abruptly or wind it down? Thanks

Longest, at what stage do you get the harmony test? I might go private if its not too extortionate...

Just, I did my harmony at the fetal medicine centre. It was £400 at 10w and goes to £500 I think after 12w

Longest. I stopped cyclogest after my 12w scan so about 12+4 ish

And longest, that is interesting as my NHS was 1 in 980 so would the Whittington have given me harmony for free? Damn!!

But I wanted a 10w scan as well

Just. Privately it is from 10 weeks I think, though it takes 2 weeks to get the results. At the whittington it's only after your 12 week results come back and it's not offered if your odds are less than 1 in 1000. But since the combined test only picks up 75% of cases according to the leaflet they gave me then presumably your better off in the higher risk but ultimately found to be ok with the harmony test category than in the low risk category? It's a bit confusing! Think harmony is 400 quid along with a ten week private scan at the fetal medicine centre but I couldn't find a price for it on its own (at least not one that was cheaper than 400 quid). Think Tiny had it recently.

Tiny they would now but they've only just started the trial so you might have been too soon anyway.

Longest- Really pleased for you and made my rubbish day much better!

Bootles- Cautious Yippee! big fingers crossed x

Bristolian- I think you, me and Fen will be the next waves of ladies that will eventually begin our journeys with new regimes. In the meantime I'm learning lots from those already going through it now. Still a bit pants though!

So tomorrow at girlie towers kitchen overhaul begins in earnest. A project we put off since we moved in 5 years ago and decided to go for it after the first mc and been a welcome distraction since. Whilst I prefer to be pregnant, it's at least something to focus on over the next few weeks. However now treading the upheaval!

Great news longest! So inspiring to hear how well it's going for everyone at the moment. Long May it continue.
bootles, that sounds really positive that you have a plan and about the possible line. I reckon it will be ok to take the pred from whenever you are sure about your bfp, as they don't know when you will test or the sensitivity of the test, so it must just be a rough timing as a guide for when to start. If it was that critical to be on it right from the start wouldn't they just get you to start it a few days earlier just in case? (Course I have no medical knowledge to base this on, but just don't want you to worry about a brief delay!) fingers crossed that your new gp is understanding

Bootles I agree with others - have never had an evap line that wasn't something else! The medication regime I was on is the same as yours will be. Progesterone from a week post ov, and prednisolone from BFP, then heparin following scan. All finishing at 12 weeks. I started pred and heparin at the same time, after my scan, as I got upduffed a bit quicker than was expected. Prof B scanned me and gave me my NHS hospital prescription a week after my BFP. Lovely man.

Unlike others, I did have trouble with my GP following up on the prescription, which was a bloody pain. I ended up getting my hospital consultant to fulfill it, but that was also hassle.

Pred isn't a nice drug, tbh. It makes you feel a bit meh, and I gained masses of weight in the first tri. I've been doing slimming world since coming off them and am nearly back on target for my starter weight. But it is a means to an end, and Prof B doesn't put you on a high dose or for very long, so it is bearable. I had had quite a few arthritis flare ups just prior to this, and have been pain free ever since, so it has some pluses!

Longest I think most of us had progesterone until we were 12 weeks.

Thanks everyone for the sensible words...that seems reasonable, that as they are a bit vague in terms of starting prednisolone (they must be aware that it may take a few days to get a gp appointment, persuade them, etc)

And also true that its good I possibly seem to have something potentially maybe treatable (extreme trepidation in those words).

I know what you all mean about the evap lines..I've never had one that doesn't into something either, but its the weird test I got, never used it before. Dug around and found 1 internet cheapie..there's something fainter than a shadow, fainter than an evap, and invisible to the untrained eye..its meant to be a more sensitive test so I am as confused as ever.

I can't keep doing this whole process, its driving me insane.

longest just checked Prof Brosens letter, definitely says progesterone until 12 weeks. Today he said that's because the placenta forms between 9-11 weeks, so before then the embryo relies on the endometrial lining -and progesterone drives the lining.

This pg started with a feint smudge of an evap on an ic. I had a frer sneaked at the back of my bathroom cupboard, so used the same pee on that one and got a pretty strong line. Get thee to boots, lass!