Recurrent Miscarriage Support Thread - Thread 17 - Tests, treatment and trying again

[Flower29]

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

sun. It is a lot to take in. I think you need a proper consultation where you can go through all the options. Please don't give yourself a hard time though. You are not selfish, not at all. You are trying to make the best decisions you can with an imperfect set of information to work with. I hope your consultant is good and rings soon. Don't let yourself be railroaded though. Insist he talks through all the options, either now or face to face.

Gosh Sun - how confusing and stressful. Hope the consultant calls you asap.

longest I've had 2mcs. 1 mmc - erpc at 9 weeks after several scans. Preg again after first AF but natural mc at 6 weeks. This is all in the last 6 months. I've convinced myself that the 2nd mc was a result of the erpc (lining too thin following erpc?) but my consultant isn't worried.

Argh I've just realised what you mean about not ttc. If I'm going to coventry this month it means I can't ttc this month, can I? That will be tough.

Yeah, afraid not. Dilemma!

Ok - slightly calmer. Dh just phoned lab to get them to explain result. Result was 6%, which is higher than expected but 'reference range' is 6% and below. So he is right on the cut off. Apparently the lab err on side of caution around cut off hence the language used 'significantly elevated' etc.

dilemma indeed. goes against every bone in my body. arghhhhh

Sun. That is good (though boo to the misleading language). In fact it could be very good - a reason for your previous losses but no reason to think it'll be the same next time. Hope your consultant rings soon.

me2 hugs. Know exactly how you feel!

sun well done DH, that sounds less scary (although still not what you want to hear, obv.) Hang on in there and wait to speak to your consultant. But I agree with being firm about asking for an appointment to talk it all through.

Sun that doesn't sound quite so drastic. Hope your consultant can put all that and the genetic testing in context for you.

Another question from me: what tests can I ask for form my GP? I haven't had any and am keen to cover all bases now

(though if truthful, am having second thoughts about Coventry with the no ttc detail!).

Sorry to all the ones with disappointing news today... I hope things will get better soon x

longest - I could hug you for putting it like that.

Oops - posted too soon.

And thanks to you other ladies. I will absolutely be pushing to discuss it with consultant. If they ever phone me back. x

me2 - my gp referred me to rmc after 2 (due to my age). They were very sympathetic but completely useless when it then came to organising the tests the rmc wanted me to have done before I saw them. It was incredibly stressful trying to negotiate their inefficiency and in the end I got most of the tests done privately (my work health insurance policy paid much to my suprise!). The gp just followed up with a couple of hormone ones. Not trying to put you off, just saying be prepared in case you have to really fight to get some testing done. x

That sounds a lot less alarming than at first sight sun. As longest pointed out, if that explained your previous losses rather than another cause then chances are really good still.
Please don't think that you might be in some way selfish to have a child that may suffer. If you are going down that route you could equally say is it unfair to not give a child the chance to live at all, which makes no sense either. You are doing the best thing for you and your family based on the information you have. 6% doesn't sound like a significantly bigger risk, although of course it is still a worry. Perhaps they will offer you some genetic counselling that would help talk through the risk.

Big dilemma on the ttc thing me2. Always so hard to judge what to do for best. It varies what the gp will test for, from nothing at all, to thyroid, hormone levels and all the clotting tests. Depends a lot on how nice/knowledgeable your gp is I think

Me2 My gp didn't do any testing but I did get her to agree to hormone testing (then got my bfp the day I was due to have them done). Others have had thyroid, insulin and basic clotting tests but agree it depends on your gp's attitude. I had to be quite bullish to even get my hormone levels agreed to and my dr openly admitted that I would need to ask my consultant to interpret the results as she wouldn't know what they meant in the context of rmc as I was conceiving.

Re Coventry - I know it says you can visit after 1 or 2 mcs but I know most people on this thread have only gone after the NHS has carried out the other tests and I am not sure what their protocol would be if you haven't had these (maybe they would order them for you?) You could email Kerri and ask.

Glad you're feeling better sun.

Hmm, trying to decide if I should apply for promotion at work. It's not a direct process - you have to complete an assessment day and if you're successful you get a passport to apply for the next level of jobs. The thing is if I apply now I will have to come straight back after maternity leave into a more difficult role (it's quite a big step up - hence the passport faff) but if I wait till after mat leave I will probably be in a different team with a different boss and will have to build my rep up all over again before applying. Another side-effect of rmc - if all had gone according to plan I would have a 1 year old by now and everything would be much clearer. Might have to schedule a chat with my boss to discuss, although I hate things like that - would much rather wait until he says "Here, Longest, you need to apply for this".

Thanks march - manic googling seems to say 6% number on this test equates to another (much higher) % of chromosomally abnormal fetuses produced if that sperm was used. Couldn't really understand the tables but the numbers were scary. Only thing that made me feel better was that the number of chromosomally abnormal fetuses from supposedly normal sperm also looked very high.

Good idea on the genetic counselling - I will ask consultant if can be referred based on results (already imaging the 10 week waiting list for appointments - why does it all take so long )

You're right sun, the chances of a chromosomally abnormal foetus even with perfectly normal conditions is frighteningly high, but the body is generally pretty good at dealing with that. So if you're thinking about things, then try not to concentrate on the overall %, or you'll drive yourself nuts. Definitely best to get an expert to explain it, as all the percentages are really a bit baffling without the context and you don't want to freak yourself out unnecessarily.

Thanks march - going slight nuts waiting for consultant to call (with obsessive phone checking every few minutes to see if I have missed it), but resigned to fact that as they are in theatre today they probably won't call till Monday (when I am in work with no mobile phone reception). Sigh

Me2 my gp has tested me for insulin, thyroid and basic clotting tests but won't do hormones yet. And a bunch of MOT style tests just to check I'm OK. Won't referred me yet because only the 2mc and my age doesn't count yet. It was too hard persuading them to do some but I'd rather have had more. We've been contemplating Coventry and seem to be sticking with TTC for now. If I could afford to go private ... Credit cards count right? Not according to dh I'd tried to get checked out then use it as my back up step... But what adds doubt into my mind is that it's only £360. That's nothing when you consider what's at stake. But then I worry my gp wouldn't support a treatment plan yet and I don't know where that would leave us. So TTC continues...

longest a chat with your boss sounds like the right thing to do assuming they're supportive. I'd say just go with it. Do it! Apply! It's only the start of a process. Sod putting our lives on hold anymore.

Sun hope consultant calls soon. Drove myself mad waiting for GP to call the other day, yelled at DP to not tie up the one when he called me. Hope they can give you some clarity.

Me2 I've also been umming and ahhing over Coventry. Spoke to Kerry, but she only mentioned the £360 for NK Cells test. Had nightmare though that I had BFP and in this dream I was really annoyed cos I wasn't doing anything different for this pregnancy so knew I'd MC, plus would have to wait even longer before I could visit Coventry. So I think this has subconsciously made up my mind for me!

Can anyone clarify though what they do at Coventry? I know they take a sample of your lining and do a scan, but does the scan check the shape of your uterus? Are they simply checking the nk cells or assessing you as a whole to give you some kind of plan? I also know you can be referred to Coventry for rmc so I confusing that with the £360 nk cells test? Sorry too many questions.

Really sorry about the other negative results this week, I hope things start looking up soon.

The implantation clinic will do a brief consult where they take your history and you consent to the procedure, then a scan of your uterus and ovaries, assessing the lining. I guess they would notice abnormal shape though for some of those things ( septum etc) you need HSG to diagnose. Then they take a small biopsy of the lining which is tested for Nk cells and for decidualisation (how the lining prepares for pregnancy) and they do a 'scratch' which is supposed to stimulate a healing response that improves lining for several cycles. Everyone I know of has drawn a blank on the standard testing before getting that far, prof Q was a bit scathing about the standard tests, but there is a bit of rivalry between the different approaches. There is a fixed protocol for this self-funded Nhs clinic, (non profit hence it's cheap in terms of private treatments) tied in with their research projects, you would be asked if your tissues can be used for their research. AFAIK they don't do the standard tests, though I assume you can be referred on the NHS to Coventry university hospital, they must have an RMC clinic. I don't know if they see patients privately outwith the implantation clinic.
They seem to have a very standard protocol of progesterone from cd21 and heparin for everyone, plus steroids if your NK cells are high.

mrsd my experience is most GPs are sufficiently impressed by a protocol from a Prof with a lot of letters after their name that they'll prescribe the meds without much fuss. They are not expensive.

If you had difficulty Coventry will do you a private prescription.

jady I've spoke to Coventry today. It seems they only test NK cells plus scan you. Presume they can see a lot from the scan. They offered me a consultation for £100, which will be subtracted from the 360 if I decide to have the test & scan post-ov. This came up when I mentioned my quandary between ttc and testing. I asked if I needed to have done all the other tests and was told no it's up to me.

longest go for it! It may mean your return to work is full on but it would be anyway and I'm sure you won't regret it. Also could it mean a pay rise pre-mat leave? That would be nice. Your boss can hopefully advise you though.

Thanks for info on tests everyone.

How is faith doing baking? Have you got a date through for the consultant appointment yet?

sun I hope your consultant calls soon. We are having the same issue, Faith has started to do a wierd eye-rolling thing as we have reduced her meds and it's been so difficult getting to speak to the right person. We have emailed them a video and waiting, again, for them to get back to us. After weeks of trailing back and forth to the hospital we've now dropped through the cracks and won't see anyone for 3 weeks, which feels like a lifetime. This time 3 weeks ago we had a normal baby