Recurrent Miscarriage Support Thread 19 - tests, treatment, trying again.

[bythesea82]

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

littlebear surely ten months is completely out of order! Even waiting the four months you already have must have been awful.

sizethree sorry you've had such worrying news. No knowledge I'm afraid but it sounds like there are some very knowledgeable people on here who can hopefully make you feel a little better.

little, the Coventry clinic we speak of is a specific implantation clinic so they don't do the standard nhs rmc testing. (Although that's not to say it's not worth going, but it's maybe something to do alongside the nhs testing. )
I'm not really sure what the referral procedure is for nhs but i know you can choose your own consultant now. I'm not sure if the profs from the Coventry implantation clinic do general rmc appointments or not, but if it's the Coventry location that suits you then I'm sure you could get an rmc appointment for the nhs tests with someone in Coventry, even if it's not the profs.

Size, good to see you back, fellow burgher, and first of all, congrats on your pg! I did wonder whether i might see you at the clinic yesterday as I remembered your appt was march.
It must be extremely scary to have that worry but it really is best to speak to the genetic counsellor. I think just and bythesea explained it well, that this isn't necessarily going to turn out badly. It could turn out absolutely fine, and the counsellor should be able to give you some percentages.

Such a scary time. Massive hugs. I have to admit i don't know much about it, but if you ever want to meet up for a chat in RL then let me know.
Remember TYAP (Today you are pregnant). There is nothing you could have done to prevent this so don't beat yourself up. X

Littlebear, I wonder if the nurse meant they are unable to test for reasons specific to the fetus unless you have another miscarriage?

Thanks guys :)

I'm under the heath hospital in Cardiff and they said there is no RMC just general gynaes where oncology takes priority they lost my letter from GP to expidite things and then I got told probably not Ahhhh

I'll go to coventry for NK tests and try and do a bit of research to see what specifics I can ask for from my GP. It would just be nice to be under the care of a specialist to be checked and then if we do get pregnant again. That's the most stressful bit ATM. On a positive note there is a hysterical thread on mumsnet ATM about parking arguments and creme eggs - it's a good read if anyone gets a chance lol x

And a question for ladies who have been prescribed Prednisone, I was reading an article last week which said that 'most' side effects were reversible. Hoping to go to Coventry week after next and just wondering which side effects aren't reversible?! My initial thought was that I hope it's not a thick(er...) moustache. Or is it higher risks of other health risks in the future? In which case similar to the pill and probably loads of other drugs.

Littlebear, I do go to specialist RMC and not overly confident TBH! Not sure what difference would be under general gynaecologist but my consultant didn't really understand about NK cells, brushed off things that I now think are significant etc. And said that sometimes they refer people to clinics in London which I saw as a bit odd... I thought surely if you're the specialist you shouldn't need to do that?

Ah ok lol so I might be better off just not bothering lol and self prescribing and getting someone to give me the meds haha :) gosh you would expect a specialist to know their stuff xxx

A local services specialist is the gateway to the research specialist (as long as they are open minded enough to think that the new research is on to something). St Mary's, London are into clotting research, Coventry are focused on uNK research etc. Also, local consultants can act on and prescribe protocols from research centres (again, if they're open to it), which saves you from traipsing back and forth to teaching hospitals more than you need to. Good luck!

longest such a pain for you to have to have GD to worry about. I really hope your scan on monday brings reassurance - you are doing so well.

enlightened welcome and I echo what others have said. We are here to hand hold.

sebs After a cancellation (my side) I am going back to coventry next monday to discuss the loss on tx. There was always a 40% chance of loss on tx but I need to know more.They couldnt get results from testing on foetus. My theory is that the tx got me to 9 wks with the high NK cells, then some other kind of immune thing kicked in and damaged the placenta. Its driving me crazy not knowing. Your DS sounds like mine 2 years ago..he's 4 next week and much calmer now.

march ugh to bad bloody luck..how can a medical field be SOOO divided?

leah so sorry for your losses, and tbe loss of Violet-Jane. My second loss was thought to have a cystic hygroma at the 12 week scan - then they decided it was a huge NT, and hydrops. We terminated at 13 weeks, just awful. So sorry. Have you found ARC forum helpful too? I have since been dx with high nk cells (5 losses) but no-one can tell me if that was a possible cause.

twilight I hope your energy picks up soon and you are being looked after.

biscuits I read the 2ndry rmc after having a boy can stop any pregnancy. Of those I have results for, there was 1 girl and 2 boys - others unknown.

Ah, I see. My consultant was a bit dismissive of NK cells research, although the fact she said they occasionally send people to London makes me hopeful that she won't be too annoyed when I go to Coventry. Well not dismissive as such, but she said it's experimental at the moment.

Bootles, that makes sense. That it would affect male and female fetuses after previous male.

bunny congratulations! We can all understand the very mixed emotions but you have to be 'in it to win it' We are here every step of the way.

leah welcome and I'm sorry for your losses, heartbreaking to be past your personal danger zone and then suffer a late loss. There is no justice.

littlebear the majority of consultants dealing with RMC will be a general gynae consultant, it's just not common enough that people deal only with that. There's only a few people where it's also their research interest e.g. Lesley Regan, Prof Quenby that you might term a specialist, but I think they do other obs/gynae work too. The waiting time sounds rubbish, and it's ridiculous to imply that you are denying treatment to a cancer patient. There is much to be said for being seen at a local centre as you will want scans etc in a future pregnancy. Most of the standard RMC testing is just blood work, there is nothing to stop your GP sending blood off for you but they tend to not know what to ask for. I paid to see a consultant privately (£200) and they sent a list of tests to my Gp.

sizethree so sorry you have that bombshell to deal with. I hope you can get the advice you need very soon.

biscuits at the doses and for the length of time (BFP-12 weeks) that steroids are used in the Coventry protocol I wouldn't worry about long term side effects. Short term they cause increased appetite and thirst, insomnia, crankiness, and at higher doses impaired immunity. Longer term they can alter body shape, loss of muscle on limbs leading to weakness, pot belly, changes to skin and hair, osteoporosis. They are commonly used in much higher doses and longer courses for other conditions, so side effects are well documented.

Been on holiday this week so taken a while to catch up...

Welcome queen, leahjane, size three, bunny, I am so so sorry for your losses, I hope you will find lots of support here and useful information to help you on your journey.
bunny and sizethree I hope this time is the one and it will end with a beautiful, healthy baby in your arms.

twilight thinking of you x

barking hope them follicles have lots of growth spurts and there are plenty at your next scan. Hope the inj are going ok.

bear sorry your rmc sounds shit and 10 months is ridiculous! I think you're doing the right think re Coventry and it will at least allow you to talk to someone who cares and knows what they're on about.

march thanks for posting that link, will have a read.

march just read your link. Don't think I fully understand it all but get the gist. I too have a DS prior to mcs and one of the things that's confused me is why I'm now miscarrying after having a healthy son. So the whole immunity theories makes sense to me. It's also pleasing to here that prof quenby is onto this and am I right in thinking their research and treatment sort of links in to it? With the presidone?? (Can't recall the exact name or check at the min)
Will definately add this to my list of questions when I go to Coventry.

Can I also share a little rant please..?
A friend of mine had a MMC prior to my first one and was a great help to me when I had mine. I felt a connection as we'd both experienced a similar loss.
Now I've had a second tho, I feel it is lost. I mentioned Coventry to her (everyone else I have told has been very supportive and thinks it's a good idea) she pulled a face and said 'ooh I think I'd only go there as a last resort'. So losing a 2nd baby must not be a good enough reason..?!
Then she was saying how it helped her to think positively and that her baby 'wasn't meant to be' and that I should try and be positive too. Well I did try to be positive and allowed myself to think the next time might be ok, but it wasn't, it happened again! She had a Dd after her MMC, I had another MMC. Doesn't she realise it's not easy to be positive anymore?!

Sorry, my rants always turn into massive posts!!!

Flower you're 'friend' sounds insensitive and a little disinterested. I have noticed that lots of people just want us to be ok again and back to 'normal'. We are a pain in the arse and no fun when we are sad, so as long as their lives are going well then we have to just suck it up and move on. Well life isn't like that I'm afraid. Your friend has had a blessing if a gorgeous baby after her MMC and you have tragically experienced another loss. I'm sure if the shoe was on the other foot your friend would feel very differently.

Thanks to you all for being so lovely. I feel a lot better just reading your comments.
I'm also taking part in a medical trial for recurrent miscarriage and the midwife involved in that has been great today and said she can chase our karyotying results so we should get them faster.
There's nothing else I can do until the results are in, which then provide the odds and I'll take things from there. I just need to stay calm as it's entirely out of my control. And when bubbling anxiety arises just to 'chuck it in the fuck it bucket', no amount of worrying will change anything.
X

Sizethree, love that phrase :) glad you're feeling a bit better.

Flower, your friend needs to keep those selfish thoughts to herself. You are different people, I should imagine that your mmcs had different causes, and you can do something different to her to investigate and try to get to the bottom of it. Boo hoo if its bursting her bubble, shit happens and just now you need support. not rose tinted bullshit. Kick her comments in the fuck it bucket. xx

Ladies, thank you for your support - means a lot. Cramping ongoing, trying not to worry but hard. At least I'm on the aspirin and cyclogest now (going to start doing it at night - didn't realise it was so messy, ick! ). Feeling nauseaous today - not sure if its all in my head/anxiety related or just the cyclogest doing its job but trying to just take it as it comes. Gp has referred for a scan, so just waiting for the call from EPAU now...

leah - your strength is amazing, I'm truly sorry to hear what you've been through. Size - that is an awful shock and a potentially difficult wait - the advice from just seems informed and hopefully helpful in allaying some of that anxiety.

thinking of you all
xxx

Bear- I had to wait 6 months so I empathise with you. One trick I've learnt from the ladies on here I was once I had my appointment, was to call the consultant's PA and explain why I was looking to get an earlier appointment. She took pity on me and brought it forward. May be worth a try.

Bunny- which trial are you on? I'm considering the Response trial and another local trial around anxiety, so would be interested to know.

bunny use the other option, no mess involved.... They're not known as bum bullets for nowt!

girlie I'm in the Response trial bs we have s thread on the TTC board if you want to peek in. There's three of us. One of the ladies had got 1DD but has suffered 8 consecutive MCs never getting past 5+5weeks. She's currently 7+4 so so far so good.
The extra support is great and the injections are painless and help punctuate each day as a success. Even if I am on the placebo I'm glad I'm taking part as my thinking is that even if it doesn't help me, I'm doing my big to hopefully help other women big suffer the shitty shiteness of recurrent miscarriage. The trial is a bit mean age wise though as top aff is 37.

Thanks size. I'll give my local hospital a call. Will need to find out about the age limit thing as will be 38 in November so if I started now wouldn't be an issue but I wonder what happens when you reach 38, will they kick you off?

girlie I think as long as you are 37 when you enrol it's fine. I think the expectation is that you hopefully fall pregnant within 6 months. They provide clearblue digital ovulation kits and pregnancy tests each month. There is a hell of a lot of POAS! They also do all the recurrent miscarriage blood testing too. It's very thorough and I definitely feel like its the best care I've ever had during pregnancy.
I see you've posted in the thread so will fill you in with proper details there.