Recurrent Miscarriage Support thread 14 - tests, treatment, 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 :)

yes, progesterone from CD21 and then heparin from pregnancy confirmed in utero - at 5 to 6 weeks

Thats really interesting. What is the theory behind Herparin? Only askking as i read that asprin is no longer advised if blood clotting is not aan issue, does the herparin work differently? PLease excuse my ignorance!

Yes, the Coventry profs believe it is connected to implantation. God, I wish I could remember it all! Baking explained it further down the thread, but that seems a lot of posts ago!

Hello! did I hear my name mentioned?
The heparin is nothing to do with clotting in the Coventry protocol, it has an action which is cytoprotective for placental cells. They give it once ectopic has been ruled out because it will also affect clotting so might cause a problematic bleed if there was an ectopic that ruptured or if surgery was required.

one day its a tough decision. I was also desperate to TTC and was so very keen not to have to go to Coventry and have meds involved..but after my 4th I was really hitting a brick wall with it being chromosomally normal, my age creeping towards 41, my RMC not able to offer anything..I just said sod it and went. I'm glad I did, even though I still don't know what the status of this pg is, I'm glad I tried something different. There's no right or wrong decision, just whatever feels right for you.

cloud just get that husband and do that deed. I know it's not always easy, I really do...But with the whole sods law thing its always on the month that you don't quite think the dates and deeds added up, that it happens.

Sorry our day not one day..I'm must copying Tanny...

Tanny how are you today? Were you able to take a break from work to get through the dip?

I mean I must be copying tanny..I can't write today..

Agree with bootles Cloud!

This bump came the month I actually told DH who was drunk from a work dinner to stop even trying on O-Day... his breath stank!
so it was the day before or the day after

Thanks Bootles, I'm a bit better. I soldiered on through, and managed to get a bit more done for one of my clients, who is going through a really rough time. When I was a manager it didn't feel so important to get things done, weirdly, but in this job, it makes a real difference to other people's lives if you have an off day/week.

It was only talking about it here that made me realise I had a reason to be feeing this stressed! And I work in mental health

oneday Your gut is probably telling you what you should do... we have all had different experiences and stories and it's definitely good to gather information but at the end of the day you need to make a decision what to do (for this month at least!) and stick with it. It's the going back & forward between options and endless research etc that is really hard to cope with. As a lot of the other ladies have said, having the decision taken out of their hands (by deciding not to TTC while waiting for RMC appts or Coventry) has often been the best possible thing for them, allowing some mental space to breathe. I'm also going to say something that made me want to punch people when they said it to me (I think we're the same age)... but if you are in fact 31 a month or two taking a break won't kill you (or your eggs). As someone mentioned earlier, 1st trimester is no picnic even when it all looks good, so do try to make sure you're in a place where you'd be able to cope if you did fall preg straight away again.

Sorry, that was a bit of a novel... bottom line, go with your gut, make a decision and stick with it.

Wow, it's like reading a book each time I log back in!
It's really interesting reading about the Coventry protocol. I was/will be on progesterone from Ov due to a very short lp, and heparin from bfp due to thrombophilia, so the blood clotting issues. I'm worried about my mc's being early so heparin from bfp being too late (which is why I was keen to try the aspirin from Ov but it's out of favour now). However IUI is supposed to give an increased risk of mc so it's interesting that heparin isn't given until a scan on the Coventry protocol, but I - at a higher risk - would be taking it earlier?
The only part of that protocol I'm missing is the scratch, which I'd be really tempted to ask for but I already know the consultant is going to recommend doing exactly the same as last time with the IUI as it worked...

Sorry if I'm repeating myself, I've probably said all this already!

sasha be kind to yourself. If you need time off work to recover just take it. I didn't, and ended up taking time off work a week later as I hadn't coped with going back (I was a primary school teacher though, so being in the classroom was tough).

Hi all. The consultant rang me this afternoon and firstly apologised for having lost us in the system (hoorah!). He said the genetic testing showed that the baby was normal, and that this is fairly unusual as 70-80% of miscarriages are due to chromosomal abnormality. I am not sure how to process this. Does that mean it is more likely to be an issue with me? Does it also mean that that could have been a "viable" baby? He is going to go through everything with us at our appointment after blood tests, which should be end of January ish.

sasha really do take it easy, lovely. I took a week off after mc2, and 3.5 weeks after mc 3. I wish I had taken longer the second time, it has really helped this last time round. And thank you for your blog comments, I am really glad it helped. xx

flen. I am glad you got your results but I do think that's the harder outcome to hear. Hugs. It doesn't mean there is something "wrong" with you but it does mean there is more likely to be a cause. The positive news is it's likely to be treatable and the doctors are unlikely to try the "just bad luck" line with you any more. Can you remind me what the gestation was? If the rmc tests come back clear for clotting etc you might be another good candidate for coventry who address implantation issues. Equally it doesn't mean it will definitely happen again. Hormonal issues which cause implantation isdues, for example, can vary from month to month.

Thank you longest, that is useful and good to hear. The gestation was 6 weeks 6 days this time, and roughly the same on my first. We never found out about the second, which I miscarried at 11.5 weeks.

Flen, that's almost exactly the pattern of #1 and #2 for me. I reckon I had implantation probs and now the progesterone + heparin have sorted it. I found an interesting research article earlier which I will post when I'm on my laptop. Basically it said that heparin helps with the trophoblast (which goes on to make the placenta) through the implantation process. It was focused on clotting issues but noted that it could help even when no specific clotting issues found.

I hope you do get some answers at your appointment in January. I would suggest holding off ttc till then if you can bear to as if there is a cause it would be gutting not to have the right treatment in place for another pregnancy. If you are holding off anyway you could consider visiting coventry too and having all the tests in one fell swoop but you'd be a braver woman than me in dealing with the consultant's reaction.

The more I hear about it, the happier I am about taking heparin if I get pg again .

flen hope you are ok, that is difficult news to hear. I think that was my lowest point in the whole 'journey' but in my case that came after all my NHS tests were normal, so in effect they were saying "nothing wrong with you, nothing wrong with baby and nothing we can do".
You may get an answer from your tests, but if they are normal I'd encourage you to go to Coventry. On the bright side it should finally stop all that 'unlucky' nonsense that gets spouted.

We have just been discussing the possibility of going to Coventry before the consultant appt, mainly because otherwise we would be waiting another month again (if they find nothing with NHS tests). We might waste that money, because the NHS tests could find something but I think it might be worth it.

Just spoke to my mum, got a classic response: "well just because there was nothing wrong chromosomally, it doesn't mean there was nothing wrong." I think she meant to be comforting...

Flen Just read all of your blogs back to back and now I'm late for book club It's so accurate, it made me cry. I wish I had the guts/writing style to write something like that.

Just on the test results - I knew about the blood clotting before my results appointment because I got a letter saying my levels were outside normal ranges and I needed to go back for a retest in 3 months. I'm not sure whether this is standard practice everywhere though so might be irrelevant to you.
It's difficult isn't it, you're not sure whether to wish there was nothing wrong, or wish there was something wrong. Totally screwed up.

I think that sounds like it could be a good plan flen. I wasn't sure whether you meant your bloods would be taken at the end of jan or that's when your results appointment is but I emailed my consultant's pa and she sent my results through which allowed me to do a bit of dr googling. If you could do that too you could take them with you to Coventry

It really strikes me from reading this thread and how quickly it is progressing, how many people are not only in our situation but also how the lack of consistent information is the root cause of a lot of our stresses and anxieties. I know there Is a lot research happening now than there has ever been been in to rmcs but I wish it would speed up so we had some answers!

Totally agree, girlie! I really don't think I would be in my current condition had it not been for the knowledge I gained here. My own consultant was fine, but unable/unwilling to think further than the standard tests.

Tanny it must be tough if you have your own clients and don't want to let them down. I see its not easy, but do try to look after you though xx

Re the clexane/heparin: Prof Brosens in Coventry told me it's at around 6 weeks (and not before) that it's properties become helpful to the forming placenta.

flen hugs. It's really hard to have that news, and I think 'they' still don't really know all the answers. But it has ruled out some of the common chromosomal causes, which I found somehow easier to accept as a random event (My 3rd mc was Trisomy 22)

My 2nd was chromosomally normal but very sick and wouldn't have survived - TFMR. My 4th was chromosomally normal, and it was after that I went to Coventry, where I was found to have high NK cells (just about). I know there are people who have similar normal chromosome results and normal NK cells, in which case maybe its other implantation issues there, or the still as yet unknown.

In regards to your consultant, you just need to be assertive. Mine at St.Mary's was very dismissive and said studies had already shown NK cells make no difference. She was then rather rude to me and I went very wibbly for a while after that. You have to rise above it. They have ego's, they have differing opinions, the medicine behind it all is still being researched. We are being caught in the crossfire. I personally felt I had to explore every avenue, and I believe there are other folk's consultants who were happy for them to explore other paths. Hope you reach a decision about your next steps and are ok today x

Absolutely agree with Girlie about the stress that is caused trying to negotiate the system under numerous clinics, consultants and so on. I have had to beg GP's for meds, apply pressure to get scans, try and avoid some medical professionals due to their attitude regarding other consultants, IF I still need clexane after my scan on Tuesday, I have no idea where I will get it from as everyone has refused to prescribe it to me. Its crazy, and all I can say is I hope we are paving an easier path for the women who will sadly come after us.

Sorry bit of a rant - definitely much stress and anxiety on this subject!!

You're totally right though bootles, it's all stress and uncertainty at a time we most need consistency and reassurance . I wouldn't have had a clue what was going on and what to believe if it wasn't for this thread and others on conception.