Recurrent Miscarriage Support Thread 18 - tests, treatment, trying again.

[bakingtins]

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.

Haha. I'm another one with slightly different cleaning standards to dh. I like the house clean and tidy but he likes it immaculate. Our argument last week started because i went for a coffee with a friend on the day after i found out I was miscarrying rather than cleaning the windows before my sister arrived. Some things just have to take a back seat sometimes!
Sorry to hear about your mum jady. Sounds like it might be good for you to speak to your stepdad about it. Maybe you're both worrying separately and it might help to discuss it.

Great attitude to have brummie! I'm hoping that after Coventry i might be able to regain some of that spirit

sebs, twilight, i know it's hard not to blame yourself and worry that it's something you did, but none of those things you did are causes of rmc, so try not to play the blame game. You're doing everything you can and that's all you can do.

Goodness me this is fast! Am I too late for marking my place?!

Me 32, DH 30
MC 1 - 7 weeks but stopped growing much earlier MMC
MC 2 - natural mc started bleeding 5 days after bfp
MC 3 - saw HB at 7 week scan but was slightly behind on dates, heartbeat had stopped by scan a week later. Medical management at 9 weeks, sent home and told to take a test in 2 weeks but nasty haemorrhage 10 days later as the baby hadn't come away.

All tests normal, bad luck diagnosed. Told to try again, asked for prog pessaries and got them. Was also allowed fragmin after some pestering prescribed at 6 weeks.

Currently 11+6 by the scan dates, measuring ahead so trying to convince myself that's positive but obviously I'm petrified.

Sorry to see all the new ladies but this thread is a lifeline so you've come to the right place.

brummie I like the sound of Cornwall

cat let us know how you get on at triage

Marking place. Page 3 of shiny new thread already?!?!! Chatty bunch

Ds born Feb 2013 no problems conceiving
Trying for numerous dos since Oct 13
Mc 1 @ 9wks end April 14 natural. Saw heartbeat at 7 weeks
Mc 2 @ almost 12wks Nov 14. Erpc. No testing.
Gp did some basic bloods which came back fine. Convinced I'm not ov at the moment since mc 2. Won't be referred unless I mc again. Considering private route still but fluctuate between sticking my head in the sand and desperately wanting to know if there is anything I can do to prevent another. I wish someone would just tell me what to do. Rubbish at decision making and asking the right questions.

Dhs best friend had their first baby last night. Happy for them but want to hide. Think I'm going to try to get a few counselling sessions through our workplace assistance scheme. Am in such a confused place.

mrsdiddly I think that in hindsight if I could have gone for private tests after mc2, I woukd have done. Are you temping? I started taking maca root and cinnamon after my cycle went wonky, I know some people on here have had success with Agnus castus too (sort of wish I had taken that too). I am also doing acupuncture which can help sort cycles out. Sounds like counselling would be useful - so good to have a place where you can just sort through some of your thoughts and feelings without having to worry how the other person will respond...

Me 38, dh 48
1st Mmc discovered about 13 weeks - blighted ovum, waited ages to mc naturally but didn't happen so erpc

2nd Mmc hb had been seen but baby died in the 2 weeks between scans

3rd mc turned out to be a complete molar pregnancy, had erpc, heavy bleeds for months and follow up and ttc ban for 6 months.

Standard tests were all fine

Now 28/29 weeks and still nervous

flen a friend took me aside this week and told me to have some counselling as I have nothing to lose by it. Its so easy to pretend you are ok but he can see straight through my keeping busy busy busy facade and is worried about how much is going on inside my little head. I will sort it out as soon as I'm next in work. I don't temp. Have tried before but found it difficult. I'm a super organised person but somehow I can't organise anything that is to do with me. I put everything else first.

I have a new fear. I was reading an article about BV and how it's dangerous to pregnant women because of increased risk of mc.
So one thing to look out for is watery discharge but because of these cyclogest pessaries I have no idea what's the pessaries and what's not. Is there any point being tested for it whilst I'm on the pessaries? As is would they contaminate it or give a false result? Has anyone asked about BV before?

Never had it or thought about it ourday. Do you have a history of it? I'm sure you'll be absolutely fine, but if you're worried you could talk to your gp. Or you can also put the pessaries in a different place, if you know what i mean! Then they wouldn't affect your discharge. It's not pleasant but you get used to it. I found it easier as there is less mess

Wow lightening thread. Waves to newbies and everyone. sebs hope you're ok and glad you managed sleep. brummie unbelievable - your friend's little lecture! baking so sorry for more nhs poor admin. Like you need that. I'm ov-ing now so Coventry appt should be in next two weeks. I feel quite unsure about it as I'm oddly not really that keen on meds but suppose I just need convincing.
What's bv?

I love how many of you are now successfully pregnant (and understandably nervous). It gives me hope.

I'm slightly confused about the protocols that are mentioned. I have no idea what testing is going to happen. I think genetic testing but have no idea whether they are going to test for killer cells etc. For those that are talking about Coventry or St Marys etc, did you start off having standard tests at your own hospital and then progress from there. My local hospital is Hintchingbrooke. It's a big hospital but I have no idea if they are going to test me comprehensively.

sebs Coventry tests for killer cells. Hardly anywhere else does (dr shehata in london and ??). My GP ran hormone & thyroid tests. I think rmc clinics do a few more like clotting. Others will be able to tell you more.

Thanks for all your lovely messages. Baby is fine, heart beating away and I'm ok.

They think it's probably growing pains or I may have pulled a muscle down there. They have taken a swab to ensure no infection and will call me back if anything is found.

Twilight and others arguing with DH I feel you. This journey is so straining! XxxX

Thanks Me2. I'm on a whole new flicking depressing learning curve.

I go away for work for a couple of days, come back and find we are three pages in to a new thread!

If it's not too late, my stats:
Me 38, dh 37, no dcs
Mmc 1 apr14 erpc
Mmc 2 bo July 14 erpc
Mmc 3 jan 15 erpc, trisomy 22
Currently in TWW. Af due Tuesday but already feeling pmt and zero pg symptoms (can usually tell by cd21). Ho hum. Oscillating between just thinking it is never going to happen so what's the point ttc and a stubborn refusal to give up. x

Glad all is ok with your little kitten, cat. That must be a relief. Hope your pain goes away soon

The information given about the testing seems to be very poor in general sebs. At my RMC they did the clotting tests (about 8 vials of blood), a scan of my uterus and I also persuaded them to do karyotyping (genetic testing) of me and DH, as we weren't able to get a result on the foetus, but this is not standard on the nhs now for the parents unless the testing on the embryo/foetus indicates it. I have also persuaded my gp to do some other basic tests including hormones, blood sugar, thyroid function and coeliac screen. RMC refused to do these. It varies massively by area. Definitely a postcode lottery.
Then the treatment plan is equally random. Some prescribe progesterone, some heparin too, some aspirin and others nothing at all. Have a think before your appointment about your treatment plan so you can go in and ask about the things you want to try. You might need to be forceful.

Coventry test for uterine NK cells. I think they might be the only ones? I think a few other private clinics test for blood NK cells. But I gather that's a bit like counting every car in the country to estimate how many red cars there are. Not necessarily going to give the right result. St Mary's does more detailed clotting tests, one called TEG. I gather Dr shehata does lots of immunology stuff, but I don't really know much about that (out of our price range but others may be able to tell you more). Hope that gives you a starting point.

Thanks March that's really helpful. I'm sure the woman I spoke to said that would do genetic testing as they wanted OH to come in too. Maybe because I had nearly got to 12 weeks. Not sure.

I'll have a google of killer cells and see what it's all about. I hear it mentioned a lot.

cat I am so happy to hear that! Excellent news!

No march never had it that I know of but apparently you can have it and not know. That's a good suggestion to 'switch locations' think I might do that and request a test for it.

Glad you are both ok cat

You would think there was a totally standard set of RMC tests, but apparently not.... They might include

1. Hormones. FSH/LH on cd2 and progesterone cd21
2. Full blood count
3. Thyroid hormone and possibly thyroid autoantibodies - I think they are still recruiting for the TABLET trial which tests this if it's not in the standard tests offered.
4. Range of tests for clotting/APS/ sticky blood.
5. Genetic testing on embryo if possible, both parents is no longer standard but should be done if embryo found to have a defect not randomly arising.
6. Scan of uterus, cervix and ovaries. Possibly further imaging e.g. HSG though if you've previously carried to term they assume this is ok. worth pushing for if you've had procedures that might cause scarring.

This set of tests comes up with a reason 50% of the time. In the unexplained group 70% will have a successful pregnancy without treatment. In practice a lot of this group will be offered something " in case" e.g. Aspirin (controversial, recent research says bad idea if no clotting problem) or progesterone.

There's no immune testing offered on the NHS, and as far as I know
Coventry is the only clinic offering the uNK test. The London clinics do blood tests, I've never heard of anyone going there and being told their levels are normal which makes me a bit whereas most of the Coventry visits have been told normal NK levels and put on the implantation protocol of heparin and progesterone. If you have high NK cells you need steroids as well.

You can do both routes in parallel, most of us have gone through Coventry having drawn a blank with nhs tests. If you are losing normal embryos and being told there is nothing wrong with you I would definitely go. You need to be 2 cycles post MC but then it's quick to book in, so just bear it in mind at the moment.

Baking how much is it to test at Coventry?

£360, includes consult, scan, biopsy and phone follow up.

Not as bad as a thought. So if they can't find any reason why this pregnancy shod have ended and all tests come back fine you think testing for killer cells would be an idea?

Ourday, I was going to suggest the back passage for cyclogest as well...

Glad all is well cat.

You're all making me feel very guilty with your talk of cleaning. Not convinced my windows have ever been cleaned since they were installed 4 years ago!

Just got in from soft play which is a revelation now dd is big enough to go on it by herself. There was even waiter service coffee.

Glad all is ok cat

mrsdiddly I think our protective mechanisms kick in - it sounds like yours keeps you busy so you don't have to think about painful stuff. I have a similar mechanism that can kick in! For me counselling was a useful space that was mine, so I had to think about me and it was safe to do so. I only do temps days 9-16ish, and then once or twice at start and end of period. It helps me have a sense of where my body's at.

Today we have been to see a house. So difficult, though, to decide anything when life is in such limbo...

Think I will try tiny and then can see if the other looks normal, I'm sure my brain invents a new worry every day for me