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'.

Welcome dolly Sorry you find yourself here! But there is lots of support on this thread, and always a hand to hold.

I agree with what the others have said - apart from being quicker, I can't see what going private for the mc testing would offer over the NHS tests. They will do the same things, I assume - lots and lots of blood tests for hormones, clotting issues, karyotyping of both you and your OH and usually a scan. Do you know if they would offer more/other tests when going private?

In my experience, the EPU got the ball rolling for the mc testing very quickly after my 3rd mc, and it took about 6-8 weeks for the results to come through, which I found a very welcome break!
You have been through the mill, too, give yourself some time to recover. And, like mentioned above, you should ttc while getting tested, as they can't get any useful results, should you fall pg again.

Save your pennies for the possibility that you might want to see the an RMC specialist, once you have had all your test results.

HI

I agree with everyone, I did all my testing on the NHS - at St Mary's London and then the self-funded Coventry ones which I would save as second resort... Good luck!

cloud Just to mention karotyping isn't always done on the nhs any more, though Mr Rai didn't recommend it for me privately either at least for now as it wouldn't have affected his recommended treatments. Don't know what everyone else's experience is.

Hi all, thought I would check in after my D&C yesterday. All went smoothly, although, as many of you know, it's not a nice experience. I made sure they retain the "products of conception" (bleugh) to send off for genetic testing, so that feels like something useful. Had a massive sob in the middle of the night. Today I am cuddled on the sofa with a hot water bottle and the dog.

Dolly I'm so sorry to hear what you've been through, I'm in a similar position after just having my third miscarriage. I've been having the same thoughts about NHS vs. private, and think I've come down on the side of seeing how NHS goes first and then consider going to Coventry if the NHS tests don't reveal anything. Coventry couldn't happen until after 2 cycles anyway, by which time we should have more of an idea about the NHS tests.

March just for your interest, following the D&C the hospital referred us to the RMC consultant (who also was present during the procedure I think) and they said it should be in about 8 weeks. Apparently we will get a letter with the EPU blood tests appointment, which should be in 6 weeks. Although they also said to call the EPU direct if we don't get a letter! I think the idea is that by the time we see the consultant, the genetic tests from the D&C AND the blood tests will both have available results. But we will see!

Hi Flen. Glad it went ok yesterday. Horrible though it is, at least now you can start to heal, physically and emotionally. Thanks for the info on your test dates. I got a call this morning for a cancellation for the rmc at the end of Nov, 6 weeks after my m/c, which sounds about right from what others have said. I'm so relieved not to have to wait the extra month. Being the oldest on the cancellation list apparently had its benefits.
I'll have to look back on the thread for the list of tests that can be done, as it really didn't sound like they were doing anything except clotting ones (although I know there are lots of those).
Hopefully the promise trial results will also be out soon and that may give another possible treatment option.

I think the tests we will have are: antiphospholipid - autoimmune factors, thrombophilias - blood clotting, and genetic tests depending on the outcome of the karyotype. That's what the leaflet says anyway!

Flen and Marchgirl you should get your thyroid function checked too, if you haven't already had this, and possibly resting glucose (I had this but Mr Rai said he doesn't check it for everyone - it was mainly because dd was quite a large baby but it came back clear). I also had scans to check the shape of my uterus. I was also pushing for hormone tests - St Mary's didn't seem to do these as standard - I think maybe because there's not masses that can be done about hormone levels except very invasive treatments - but I wanted them so I could better understand what was going on and my gp authorised them for me but I got pregnant before I could have them.

Flen - glad it went OK but a big hug for what you're going through at the moment.

Second getting thyroid done, and check the results don't just go by them saying it is finE, I was nearly fobbed off.
flen hug that hot water bottle and grab the vino if you need to, but try and get some fresh air over the weekend too, helps the healing.

Hello Dolly, sorry for what you are experiencing it totally sucks, but you will find good company here.

Well my tits are so sore my clothes hurt, I am permanently thirsty and knackered. I am hoping these are good signs, but I don't have the fierce hunger or the six am pee yet. Hoping these will kicK in, stop me going mental. Good weekend all

Thanks so much everyone for your responses, im just so fed up of waiting, its seems like all you ever do is wait in this situation!
Im in kent so have an appointment at pembury which is where i have been for all of my scans with each miscarriage so far.
Is coventry the only place that tests for nk cells, im assuming the nhs dont do this?
Flen i am so sorry to hear your story, have a nice relaxing weekend with your feet up and some good 80s classic films.
Fingers crossed for you belleende!! Xx

flen hope you are recovering ok, take it easy.

dolly your options for NK testing are Coventry or several doctors in London. It's only available privately. Coventry are running research into NK and implantation issues so you go as a 'self-funded NHS patient' and it's £360 which is not for profit. The London doctors Shehata or Gorgy if you want to google or have a look at the thread TTC on pred on the conception board will be £££ and base treatments on a blood test. Opinion is divided on how relevant circulating NK cells are to what happens in utero ponders that I've never heard of anyone not having high NK cells on a blood test whereas several of the boardies have had normal results in Coventry The London doctors do offer more aggressive treatment protocols (intralipids, IVIG, humira) than Coventry, who seems to give everyone progesterone and heparin to support implantation, then steroids if NK cells are high.

Hey all, hope everyone's ok? I just got a BFP - bit of surprise really as I'd resigned myself that it's take months! I had my most recent MMC in September and they told me if I got pregnant again to come straight in. What kinds of things should I be asking when i go to the epu? They mentioned herapin progesterone and asprin last time I was there

Thank you Lurker, I will defo check about thyroid function. I am going to see my GP next week too, to talk through what will happen and make sure the referrals are all happening.

Thank you Belle and I am keeping my fingers crossed for you!

Dolly I completely agree, the waiting is just awful! My plan to get through the next six weeks is to do nice things, which will start with breakfast out somewhere nice tomorrow. The one thing I am not sorry to say goodbye to is the horrific sickness and food aversion!

well done boozle, get some progesterone on board asap if you can, but I'd avoid the aspirin until you see the consultant. I'm getting my heparin next Thurs hopefully.
Just ordered a breakfast in mway services, asked for well cooked egg, it was a bit runny. I nearly cried. DH ate it. So the emotional madness begins...

Woo hoo boozle let the symptom monitoring madness commence.

just the latest evidence is runny eggs are fine. I am still dunking my soldiers (into waitrose premium well posh eggs of course)

The 6 am wee kicked in today as did the potentially very scary hugely painful cramping, always induced by a kind of mini-orgasm I have in my sleep. Over share? Moi? I have mumsnet to thank for not freaking out about it. It is a thing apparently, my sisters both had it.

Brilliant news boozle keeping fingers crossed for all of you that are preggers. Thanks for the info on other tests everyone. I will make sure they do the thyroid test. I'm sure my gp could do that one if the rmc refuse. I'll write down which ones they do so I can check them all off.

Congratulations boozle. Fingers crossed for you xx

Welcome dolly. Sorry you find yourself here, but I'm sure you'll find the support you need on this thread.

Glad things went smoothly flen. Hope you're feeling better today.

Congratulations boozle! Sending positive vibes your way.

Good news on the symptoms belle all sounding good so far!

After crying during my first pregnancy whilst nuking my eggs and serving DH his runny, I did a bit of research just. Apparently if the eggs are lion marked (which they pretty much all are these days) then the hens have been vaccinated against salmonella and there's no reason not to eat them with runny yolks. I had three soft boiled eggs for my tea that day. They were the best eggs ever

Speaking of eggs, looks like it's O day for me today. Wonder if it's a good one this time...

Yay, boozle, excellent news! How are you feeling?!

Reassuringly terrible thanks *Cloud"! Fingers crossed this is the start of the trend of BFP's on the thread!

Having a very lazy and decadent lie in today and it just struck me that I have completely blanked out the whole mn "becoming a parent section". First time round I dived straight in, barely had a bfp and I was thinking about due dates. Second time round, more cautious, but after good 8 week scan joined in a bit. It all went tits up at the 12 weeks scan. Since then, I don't think I even register it as a place that might have relavance for me. Has made me a bit sad that has.

Spotting. Only a tiny bit.

Congratulations boozle

belle all sounding good so far. Not thinking too far ahead is a good self- protection mechanism, just take it one step at a time.

Sorry just cross posted. Try not to freak out. When is your first scan? Are you inserting your progesterone vaginally? It can irritate the cervix and cause spotting. Hope it is just one of those things. Awful feeling though.

Aw just. Could well be implantation. You're at the right stage for it.

Thanks Baking, yes I am. Hopefully its just that. I'll try the alternative I also have lower back aches, but I've had that all week. its annoying but not bad.