Recurrent Miscarriage Support Thread 16 - tests, treatment and trying again

[Justonemoretime]

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats :)

Great news ourday

eva glad you have made some progress with coventry

I find it so difficult to keep up with this thread!

I could with some advice as my head is about to explode with info! I've just had bloods taken for standard tests so waiting for these results but I need to sort out a plan. Have you al had karyotyping tests? These are only done in our area if tissue tests come back as abnormal as of yet I don't know if they will have enough to test. If not would you recommend getting it done privately?

I'm trying to decide about going to coventry, well probably halt ttc next month so I don't miss my sisters wedding in nov so this could be a good time to go. I also have appt with dr shehata in London in march (I thought my insurance would cover him but looking unlikely) but may cancel it. How did you all decide what route to take? I have nhs appt later in feb so will see what they say but I'm assuming they won't be much use so would like to have a plan of attack. I don't get pg very easily, on average a year for each bfp and one was iui so I don't know if that makes a difference as to what I should do!

It just seems mad that we all have to try and find a way through this mess ourselves.

Sorry for the rant, I just needed to try and clear my head!

Baking still thinking about you and faith x

Hi guys
So I was really trying to keep up after holiday but work has been full on so sorry to those I miss and here goes!

Eva, sorry that you’re here but glad you have been so proactive and hope Coventry works out for you.

Brummie hope you’re ok after yesterday, sounds like you did your best on a horrible day.

Jady be kind to yourself, it’s so hard, you might just need to take a bit more time before getting back into work and it’s really ok to say you’re not coping that well. I think a lot of us on here would say that MC2 is a particularly hard one for a few reasons. Hugs

Ourday sorry, I would have sent much virtual hand holding but great to see that it wasn’t needed! Woohooooo

Tiny I think it on some days I would find it very weird to have a pg sonographer and other days, I wouldn’t even notice! Must put her in a difficult position as well, I wouldn’t like to be pg and giving bad news to people when it’s so close to home and you know how you would have felt.

Cloud hope tonight is ok and makes you feel like things are moving forwards.

Floweroct we didn’t have karotyping done, the chromosomal abnormality with the foetus for mc3 wasn’t something which indicated a problem with me and DH so they didn’t recommend it. My blood tests were all normal. Due to the chromosomal abnormality, we are just going to try and again and hope we were unlucky 4 times. Not sure what we’ll do if it happens again and foetus is normal but we’ll cross that bridge when we get to it.

Baking thinking of you both and Faith, I hope that you are slowly creeping towards some answers and Faith is still seizure free.

Calling all those in 2ww – when are you testing?! Was planning on tomorrow but AF pain kicking in so don’t think it’ll be necessary. Ahhhh – haven’t missed this blooming 2 week cycle of life at all!

Hi flower. It's so hard to know what to do isn't it? My hospital is also one who said no testing parents without indication from the results of the tests on foetus.
In my case, Before I Had my consultant appt they came back to say they couldn't culture the sample from the foetus. So despite the rules, my consultant took bloods from me and dh and sent them off with a note to explain why they should be tested due to our circumstances. She wasn't sure whether they would test it or not, but they did (came back normal). If you have any family history of rmc this is also something that persuades them to bend the rules and do it.
So might be worth going back to ask them about doing the testing if there isn't enough to test the foetus. I think it's v expensive to test privately, so hopefully the foetus will come back with a result and if not, i would say push for nhs testing first.

It's also worth saying that genetic causes are quite rare. They are also untreatable apart from with embryo selection type ivf. So I Guess what I'm saying is, think about whether that diagnosis would change your plan. For me,it wouldn't have stopped me trying again, but if there was anything wrong, I wanted to know the percentages and if I had a diagnosis, it would have meant I might have stopped looking for other causes. So for me I felt it was important. So hard to decide though

I would say if you're doing Coventry then that's a good plan and maybe stick with that? Because of the back biting it sounds like doing Coventry and St Marys at the same time could be exhausting/stressful!

I chose Coventry over Dr Shehata or Gorgy for the NK stuff based on

1. Sampling uterine lining rather than blood tests - nobody seems to know or agree on whether blood tests correlate with what is happening in the uterus.
2. no of visits, I don't think the London doctors will work with local centres, you'd have to go to them for everything
3. Fixed and much lower cost at Coventry
4. I would have been wary of the more controversial treatments (IVIG, intralipids) anyway and not really able to travel to London regularly.
5. I don't know of anyone who has seen the London doctors and NOT been told they had NK problems, whereas it seems to be about 10% with raised levels at Coventry, the remainder just having the implantation protocol.

We had agreed that Coventry was our last ditch final try, whether we'd have changed our minds and gone to someone in London if it hadn't worked, I don't know. I think DH might have called a halt.

Last day of no work for me. Back tomorrow...

Baking how is Faith?

I have a quick random question - so I see my consultant and he says "Miss Brummie we are going to give you progesterone and heparin (or whatever)"

What happens then? Do you get given a prescription then and there or do you have to go to GP? What happens? (Just being nosy)

brummie
For my progesterone she gave me a letter to take to the gp and they prescribed it (she said it would be quicker than sending the letter to them). I got the stock from the chemist straight away so I could use it whenever I was ready. Not sure about the heparin (just sent a begging email to my consultant on Monday but yet to hear back if she'll prescribe). But I know that is from confirmation it is in the right place and as it's injections you have to be shown how to do them, so I imagine you wouldn't get that until the early scan (but perhaps you still get the letter from consultant saying its advised). Sure someone else can confirm this, plus it might vary between areas

I was wondering the same thing brummie. After mc2 rmc told me they didn't recommend progesterone etc, which I accepted, but after this latest mc, I just feel I can't try again without feeling as though I am trying something different.

I have an rmc appointment on Friday, so can I just check with you Coventry ladies, Coventry prescribe progesterone from day 23? Is that right? And is that to ensure suitable implantation conditions that they prescribe it from that early? Then heparin from the first scan? Is heparin only prescribed by Coventry if there are clotting issues or do they generally recommend this?

Thank you! Just a want to make sure I am armed with the right knowledge and questions so can really push this time.

X

I don't know if my consultant suggests heparin but am certainly going to suggest it.

I believe that he does routinely recommend progesterone so am hopeful to at least get that. But I will be pushing!!!

I'm desperate for my appt to be here but have no idea why rushing as only just had blood taken and haven't even got AF yet as still in wtf cycle.

#impatient

Bummie, I got some progesterone from the Coventry hospital pharmacy and my GP was also happy to prescribe it when I had a bfp and a letter. She would only give it in 2 week batches, though, as she said it was too expensive to have sitting in a drawer and not being used. It wasn't a problem to get it, though.
Heparin was another story as, in Bucks, GPs don't have the authority to prescribe it. I think the rules on this vary. Anyway, she first said she would need to refer me to a haemotologist, but in the end she wrote to the gynae consultant at my local hospital and explained why I had been prescribed it by Coventry, and the consultant agreed (in writing, which was good) to prescribe when I needed it. I still took all my Coventry letters to that first scan and I did have to show them as there was some discussion about whether I had to wait to see the hb, or whether I could have it from seeing sac etc. They finally agreed (in a kind of 'on your own head be it' kind of a way) and then we did a few laps of the hospital while we got the prescription, then the sharps bin, then someone to show us how to inject... The NHS is great, but it's that sort of disjointed faffing that drives you crazy. Anyway, we got there in the end. The next hurdle was getting rid of the full sharps bin and getting a new one.... (think going into various chemist pharmacies and trying to persuade them that I'm not an addict, honest.)

RE karyotyping (sorry, can't find who asked), DH and I both had it after mc 2, but that was only because it turned out that a blood relation on DH's side had also had some issues, although it turned out to be unrelated and we were both clear. We also had it done on mmc#3 as UCLH seem to offer it as standard after 3 mcs. That was Turner Syndrome and we were told it was a one off random genetic error. No-one seemed to think that it would mean we might have more genetic issues in other pregnancies. I would be VERY wary of anyone trying to tell you that you might have had 3+ with genetic issues when you or your DH are clear; of course it could happen, but it is statistically VERY unlikely. Like me, you may have more than one problem (some kind of as yet un-named implantation issue and and 'bad luck, one off, random' genetic issue with one pg.

Flower, I'd go for Coventry for all of the reasons Baking said, and I also think its really good and good value for money, since you're spending it.

sun, brummie I gather the Coventry protocol is Progesterone from 7dpo (which is cd21 if your cycle standard 28 days) and heparin from scan for everyone. Also they do a 'scratch' when they are doing the biopsy, which might help improve the lining for about 3 months. If you have high uNK cells then they also prescribe prednisolone.

Heparin is not just prescribed by them for clotting issues, it has a cytoprotective effect, preventing cell death and helping implantation. There are studies published by hills et al and chen et al to this effect, although they were only done on cells
See this link for results of a trial done on actual people in Egypt www.fertstert.org/article/S0015-0282(12)01433-1/fulltext
I wish I'd done all my research on this before I saw the consultant so I could have discussed it, rather than just sending the email to beg for heparin!

Great news ourday!!! Hope you can relax a little and enjoy this time .

Hope tonight goes well cloud.

baking, so many wise posts from
you, thank you for keeping in touch with us. I'm still thinking of you and little Faith and you're all ok.

I am 18 weeks today and still can't believe it. Went to an antenatal fitness class last night and that was emotional for me but I got through it.

Quick check in as currently away with work but wanted to say congrats ourday x

Hope everyone's ok in the meantime will catch up properly later in week when have better wifi x

Ah Just didn't realise you were a Bucks girl

I'm a Buckinghamshire girl but moved to Midlands as sick of working in London and not being able to afford anything!!! Miss the area, but finance / commute wise would never go back.

My family are still there though so still get to visit

Thanks for info though.. Interesting to know, and I'm being nosey.

Thank you march - that's brilliant. Exactly what I need to be armed with on Friday! X

Quick post today...

ourday that's fantastic! Great news

cloud hope your appointment goes ok and you and DH negotiate your way through it.

baking did faith have a follow up today/yesterday? My days are muddled..still thinking of you both often.

Re karyotyping, after 5 losses we still haven't had it for ourselves. I would like to, but OH isn't keen. I don't think he would cope at all well if there was a problem with either of us. He can't even face the possibility (not helpful). The genetics counsellor that I'm still in touch with since loss 2, says its unlikely to be an inherited genetic problem with us, as we have a healthy DS, are from very different gene pools, and the losses have been really different. Also as someone else said, even if there is an issue, it may come down to continuing to try until you get a good un.. So it really doesn't make such a big difference to know or not. I'd like to know, all the same. Sorry, that may not be particularly helpful to the question!

Re pg sonographers/epu staff/etc...the thing is, the NHS is full of female staff of child bearing age. I think, (and I could be wrong) that those types of jobs often don't have that much to do that is away from patients, especially when there are staff shortages, which there are bound to be. My epu is pretty much always crazy busy. It's far from ideal though, and I sympathise with anyone who has had a difficult experience.

Heparin - my dose from Coventry, with no clotting problem (it is cytogenetuc is protects placental cells) was 20 units once a day.

So now AF is here its the start of a new TTC cycle. I don't know what else to do. I'm panicked by my age, and just feel desperation. I have been feeling just dreadful for about a week - neurotic, paranoid, stressed, very close to tears for a lot of the day. There are other things going on too, which don't help. Ah well maybe an early night will help to boost my mood.

Apologies for not checking everyone, but hi to all.

I swear that was going to be a quick post....

No idea what cytogenetuc is..march has said it properly..

lol do you mean cryoprotective? Helps the trophoblast implant which gets the placenta started.

Waves to Brummie, ex-bucks girl!

Yes, bloody computer did it, not me!

Cytoprotective is what I was aiming for. Though I did try to put in a differently wrong word, and the computer just made it more wrong. See? Stressed so that I have lost the ability to write, with ongoing neurosis...

Hugs bootles

Um guys, BFP this morning, very very faint but there.....
Cue total panic! wasn't expecting it so fast, has always taken a while before

Woo hoo Bythesea what's your treatment plan? Hope you can get your hands on whatever you need. Try to relax (!!) and remember and repeat 'this time is different'.

Yay yay yay bythesea. Massive congratulations. Here's to a very boring 9 months. Great start for the 2ww ladies. Who is up next? flen

Tentative congrats bythesea