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 :)

bootles glad you are home and it is done. We're all here for you whenever you need an ear.

Hugs bootles

Hey bootles glad they managed to get to you today. I hope you manage to get some rest in the next few days. Big hugs.

Hope you can get some rest/keep busy today bootles, whichever helps. Have you got any support in RL other than DH?

Can I please ask you knowledgeable ladies a question on behalf of a friend? She's not had a mc, she had premature menopause in her early 30's and therefore tried IVF with donor eggs. It didn't work, and she's gone to another clinic to try a second time, but they have asked whether she wants immune testing. This would cost £2000 on top of the cost of donor egg ivf and delay the next attempt by 5 months. Going somewhere else for testing isn't an option as the clinic only act on their own results. They have a potential match for a donor ready now so she could otherwise start pretty soon. She could be waiting a while for another match. She's unsure whether to have the testing or not, obviously she wants to eliminate any potential issues before paying out for donor IVF, but it's a massive cost on top of it and involves more waiting.

I was under the impression that the number of women who are actually diagnosed with immune issues was fairly small, so the chances of her finding a problem were remote? Is this right? The clinic will not prescribe anything 'just in case', although she'll be on aspirin and clexane as part of the IVF anyway. What would you do?

Barking, I'm no expert (except in rip-offs-ville - what a cheek not accepting results from other places and then charging those prices!!! I'm sure a GP would run a few basic tests), but I'll tell you what Prof Brosens told me at our first appointment. He said that implantation is hugely a complex process, which is still little understood. There are cases of 'unexplained' RMC - no clotting issues found, and cases of women with clotting issues never cause them any problems. That's why he and Prof Quenby think there's more to it than simply having a clotting issue or not, although I presume that having a severe one would impact on your baseline odds of having a problem. I'm not sure where that leaves your friend, but, since its only (!!!) 1:100 ladies who have RMC and only 50% of those who turn out to have an 'identifiable' (by the NHS) problem (read as anatomical or clotting issue). Profs Brosens and Quenby do say that the uterine scratch pre implantation increases the chances of success in IVF cases, and I don't know whether they would do that as part of her current treatment? I hope this helps? Good luck to her, whatever she decides.

I agree that the number of women with immune issues must be

My other thought is how would they test? My impression is that pretty much everyone who has the blood tests is told they have high NK cells (well I've never seen anyone posting a negative result) whereas Coventry seem to find the majority of people are normal - based on a not very scientific head count of women from the thread.

Thank you so much Just and baking, that's very helpful. Ironically, they had the first round of donor ivf at Coventry, but due to it taking 5 months?!?! to get a follow up appointment they've gone elsewhere for the second try.

Just checking in to send you some hugs bootles. Glad it went smoothly, think tears are absolutely part of the process and glad you got some time off too.

I've been off the thread a few days and am so so sorry to come back to your news bootles. I hope you're getting loads of hugs from the DH and lots of sleep. Tears are normal, I cried a full 2 weeks before and after my ERPC.

Woke up this morning and none of my trousers would do up. Had my first maternity shopping trip. Felt vv odd, I have basically erased the presence of mother and baby shops from my psyche. I went into yoyo maman, felt like an imposter. Grabbed a pair of trousers and some pants and ran out. Not sure if it was more to do with personal circumstances or that I was a bit freaked out to be looking at clothes I would normally never be seen dead in. I do not do blue and white stripes.

Belle, I've only just stopped sobbing when I go into maternity departments, and when I bought some babygros I had to hide them under the rest of a sainsburys shop so I didn't cry in the veg isle. Am still hopelessly disorganised about it all, as I might jinx it by getting nappies or a car seat...

Funeral no. 1 tomorrow for our family friend who had been ill for years. Might have a good blub there too...

I went online on Mothercare to get some new pants and tights in the sale this morning and didn't have the nerve go though with it. Not that I quite need them yet (although my jeans are now getting a bit tight). I will probably need them once I am back at work.
I have ordered one of those boob-shaped baby hats though. But I am calling that a politically motivated gesture to piss off the Nigel Farage types of this world.
Hope all goes as well as can be expected at tomorrow's funeral, Tanny.

I had a freak out when getting maternity clothes for my first pg and that was without the stress of MC, hate to think what I would be like if I ever did get pregnant again! Be brave ladies and remember it won't change the outcome of your bumps.

Tanny- thinking of you tomorrow x

Glad to know its not just me. tanny you really are having a week of it. At least you know there is better to come in 2015.
cloud how was switzerland. Did you survive ok?

As I have agreed to host a last minute party tonight as the original host is ill ?? I'll wish everyone a happy new year and hope everyone's wishes for the new year come true. X

Hi All, hoping for a bit of advice if possible...we have ttc for 4 years now, 3 mmc, ashermans occurred twice and at Lesley Regans clinic at St Mary who have advised I have raised TEG and prescribed 1200g of folic acid, cyclogest 400g twice a day and 150g of aspirin when next pg. Due on today and got faint line's on various tests last night and 1-2week pregnant on a CB Digital.

I've heard of other things people get to help and my question is should I be pushing for heparin -does anyone know if it would it be useful for me and would there be any point of me contacting Mr Shehata to see if I can get anything useful there??

Just desperate to do whatever I can to help this bean along...

Hi cava, sorry you find yourself here but congratulations on the recent bfp!
Speaking from the point of view of someone who has been reading everyone else's advise here for a while, I would say it might be worth you pushing for heparin. I'm actually surprised they haven't prescribed it already if you have any kind of clotting thing. Even aside the clotting benefit, it is believed (by some) that heparin has a positive effect on the development of the placenta, and a lot of people on here put their current successful pregnancies down to heparin.
You might experience some resistance from St Marys, as the protocol that includes heparin even for those with normal clotting results is at Coventry and I've heard that St Mary's don't agree with them. This squabbling doesn't really help you.
Hopefully you can put forward a case for heparin from confirmation it's not ectopic, which would be a scan at about 5 weeks (as heparin + ectopic = bad).
Wishing you all the best with persuading them if you decide to. Let us know how you get on

cava I echo what march says. That is one rough road you have been on. I really hope this is the one for you. I think it would be worth you trying to push for Heparin but if St Mary's won't play ball then I have to say I am not too sure where you turn. Most people on here who were prescribed heparin got it following a visit to Coventry's implantation clinic but you need to be not pregnant for that. I don't know a lot about Mr Shehata other than his clinic is ££ and he tends to prescribe more aggressive treatments than St Mary's or Coventry. I would start with St Mary's - go armed with research, preferably connected to your TEG result as they are sceptical of the benefit in women with no diagnosis although, like march said others are more positive. Some other posters with experience of your diagnosis and/or acquiring Heparin may be along shortly so keep checking.

That said, I am currently 18 weeks pregnant on a St Mary's prescription of nothing at all, following 3 mcs but negative tests (well I had progesterone from 8 weeks but by then I was already further along than my mcs) so it can happen. Good luck! xx

Sorry, I meant negative tests for clotting etc at St Mary's

Hi Cava, congrats on your brand new BFP. FWIW, I think your plan sounds OK, although, if you could get heparin, it would be a bonus. Since you do have a +ive TEG, the 150mg of aspirin will help, I should think, and do much the same job as heparin would. In fact, when I was speaking to prof Quenby about my treatment plan back in March, she said that the 150mg aspirin with progesterone was pretty much mimicking the Coventry plan (except that they think that heparin also promotes building the placenta - a cytoprotective effect is what they call it). So, I wouldn't be concerned with what you're on. Did you have any of these treatments previously? Best of luck with it all. I presume you'll get lots of reassurance scans? These are shown to have a very positive effect in their own right, too.

I'd also start the cyclogest ASAP; can you get in to see your GP as an emergency today? The sooner the better with that, I think. Good luck.

Yes, to echo what just said, it's very positive you've got a diagnosis and a treatment plan. Fingers crossed that's what was missing last time and all runs smoothly this time. x

Just checking in after my holiday.

So sorry to read bootles' news. I have pm'd you lovely.

cava welcome to the feed and congrats on your BFP. I agree ask for heparin and get on cyclogest ASAP.

Hugs for the funeral tanny hope it goes ok.

XxX

Thanks ladies for your replies, excellent advice there. I managed to get a telephone consultation with Dr Das at St Mary's and as you suggested he was really against giving me the heparin. However I eill do exactly as recommended and do my research and go armed with that. He told me I will be scanned weekly starting from next week so I'll see them enough to hopefully persuade him.
He said no point throwing everything at it if we have a diaganosis, I however disagree and think I'd rather throw everything and anything at this stage. I was just actually commenting to my DH that if anyone wants money of me just now their lucks in if they give me any belief it'll help
I had picked up a prescription of cyclogest after the diagnosis and had it waiting in the cupboard so started it immediately- thank goodness.

Thanks again for your advice, I will keep you all posted on how I get on.