Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

[forestnest]

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

I think for me, I'm just now more aware of it all. I used to get what i now know to be ovulation pain. In fact it got so bad that i went to the doctor and they tested me for pcos (although never bothered to ask if it was cyclical!). They found nothing wrong, but now i know it's ovulation pain. I just didn't even know it existed before. I think it can change you and change your cycles etc, but i think just being more aware of what your body is doing also has a big effect

GM lovely laides! I did go to epu yesterday. They just did some bloods and they were ok. They didnt scan me as i'm only 5 weeks. Spotting thankfully has reduced a bit..lets see how it goes...i'm sitting tight on it with all positivity that I have...thanks all for ur wishes. Love xxx

Ellie thats great news very pleased for u!!

Is the facebook group a more active place?? I would live to join but i deactivated my accout last september after our son died so wouldnt really want to reactivate it if people could see i was back on and i dont think you can do it without people seeing xx

Kane the fb is very active. Could you create a new fb profile with a different email address and just use it for the group. Could be a pain to do. I don't know. Xx

Glad the bloods were good Ellie keeping everything crossed for you x

Hi,
Is it ok to join the thread?
Just had a third miscarriage, struggling a bit.

Sorry, should have said- ds born May 2014, natural mc Nov 2014 at 9 weeks, mmc May 2015 at 7 weeks, then mmc Nov 2015 at 5 weeks.
Had some bloods done on NHS after second mc, all fine. Have just seen a consultant in private Glasgow hospital who suggested Kyrotype test, which he said was available on NHS and he said next time I'm pregnant I've to start progesterone at 5 weeks. Called the EPU to ask for the Kyrotype test and they refused, saying not routinely done on NHS now and it is several months wait to be referred to clinic. Frustrating process!
Any advice appreciated. Didn't know where to look for info and don't know anyone who has gone through this. It was information on this thread that lead me to suggest the progesterone.

Mrsdiddlydoo if thats ok i think i will do that this week and pm marchgirl as i would love to be a part but really dont want to go back on facebook so as long as you dont mind ill get it sorted before the weekend that would be great! Xx

Hi louloulou so so sorry for your losses the waiting is superfrustrating!! I was told i had a ten month wait to see a specialist in recurrent miscarriage but he was available that same week in his private clinic. We just saved and went for it and hopefully it will be worth it....its all so flipping expensive but i just couldnt do a 10 month wait xx

Hello everyone... Just marking my place again, haven't been able to catchup and keep up with this thread, mostly on the facebook group, but feeling really bad about it, as this is where I first found all the lovely help and advice and lovely friends. Promise to keep up here now.

Re ovulation, yes since my 1st miscarriage (I've had 4) I can tell you exactly when I'm ovulating the pains are unmistakable!! I also suffer from time to time from spotting after sex in the week before my AF arrives, this NEVER EVER happened in all the years before miscarriage!! x

Of course that's ok kane, you're more than welcome. Pm me when you've got an account sorted

Good news on the bloods ellie, and glad the spotting has eased a bit. Have you got an early scan booked?

Welcome lou, but sorry to hear of the difficult time you're having. Do you know what blood tests you had after mc2? You should be referred to a recurrent miscarriage clinic after 3 mc. It may be a bit of a wait but its worth getting yourself on the list if you can. It's useful to have an rmc consultant to go to, even if your tests come back clear, in case you need any other drugs prescribing. I found that although the appointment was initially 3 months away, I was able to bring it forward by phoning up for cancellations. It's worth getting to know the secretary of the consultant if you intend to do this - they have all the power!
The karyotyping on the parents isn't done as standard in Scotland anymore, it's only done if karyotyping on the embryo shows a potential issue (stupid rules!). I managed to wangle them doing it on me and dh because when they tested the embryo from mc3 they couldn't culture the cells, so there was no result. Ours came back normal. Have you had any of the embryos tested? I gather the testing is very expensive to get done privately, hence why the private consultant will have suggested getting it on the nhs. Another thing to bear in mind is that genetic issues are quite rare, and there isn't very much you can do about them (unless you go down the route of ivf with embryo selection - which is mega bucks). I'm not trying to put you off, I also felt like I had to know, to rule it or and so if we did have an issue, I would know that we just needed to keep going until we caught a good egg. But it's worth thinking about whether it would change anything to have it done, or whether you could wait for the nhs appointment.

Many of us have been down to the Coventry implantation clinic to have testing of uterine natural killer cells (uNK). I tested high for this, and was prescribed steroids, heparin and progesterone for the first trimester. I really feel it's what's made the difference for me (I'm now 21 weeks), so I'm really glad I went. We have put together a sheet with details of some testing that some of us have had (including coventry). The link is at the top of the stats list on page 1 of the thread.
This is an awful lot to take on board so sorry if it's all a bit much. If you have any questions then feel free to ask away. This board (and our fb group) has an amazing bunch of supportive and knowledgeable women on it.
Finally, a big hug for what is a really difficult and frustrating time. There is still plenty that can be done, but it's hard to keep picking yourself up. Stick around and chat to us x

Hey ladies.

Im sorry I have been on here since before the hack and I've been feeling guilty that any newbies may not have as much support.

It's just taken me 45 mins to get logged back in! I'm currently off work recovering from medical management on Saturday for mc 5 so I'll try to catch up tomorrow.

Sorry to see there are a few names I don't recognise straight away. It's shit that you've had to find this group but I can honestly say that the ladies I have met through here have become a lifeline and helped me to maintain hope of a happy ending.

Hi everyone! Just marking my place here too, been awhile since I was on here as been on the fb group a lot and just can't keep up! But waves to all the newbies, this thread really helped me, a lifeline so many knowledgeable women on here, you are in the right place! Sorry for all the losses. I've had 3mc, I natural and 2mmc with erpc in last year. I have ds age 2.5 and now ttc again after having all tests done private at St Mary's and Shehata over summer. All bloods normal but had an adhesion removed at St Mary's last month. I'm 43, so don't have much time left. Mc3 was tested and had downs and trisomy 15, it was a girl. All my MC have been 5/6 weeks stopped growing. It's just heartbreaking xx

I've given up on trying to catch up on all 17 pages and have just gone back over the last 3!

Ellie im.sorry you've had the worry if spotting but glad the bloods have given some reassurance. Are you having more bloods done today?

All these 20 week + pregnancit's and real life happy endings really give me hope. Everyone always says they know someone... generally a work colleagues husbands sisters best mates cousin (iykwim) who's been through 20 miscarriages and come out the other side with 5 kids (I exaggerate). But you guys are real / feel more real than this faceless nameless person.

As for the acupuncture conversation... what are the benefits? Wondering if it would give me any benefits (in a nutshell My history is 5 mc. 1, 2 and 5 were mmc found between 9 and 12 weeks with no development past around 6 weeks and 3 & 4 were natural at bang on 5weeks for both.)

Was hoping to go back to work tomorrow after medical management on Saturday but woken this morning with horrible cramping. No way hubby is gonna let me gof back tomorrow

Hey Ladies,

Marchgirl- thanks for your message. None of my miscarriage tissue was tested other than to confirm non-cancerous cells. I asked for it to be done this time and the private consultant said that it wouldn't help and that it was the kyrotyping that would help. The tests themselves are around £500 for both of us plus nurse fees. I think though that the expensive part is that we might have to pay for a genetic specialist to interpret the result. They stressed I can't just be sent results but maybe a gp could tell us? I will ask a go next week. I think I would rather know, the consultant said it's important to know the chance of having a disabled child if we did have a balanced translocation so even if just for peace of mind we'd pay if we have to.

Hadn't heard of Coventry until reading about it on here yesterday so will definitely call them after two cycles and try that avenue, they sound great.

Thanks again, Lots of the stories on here give me hope!

The nhs tests were: fibrinogen-clauss, coagulation screen, lupus anticoagulant, anti-cardiolipin abs, thyroid function, serum vitamin b12, serum ferritin & serum folate

Ok, so that sounds like the main clotting ones are covered (although couldn't tell you if that's all the rmc ones - anyone of the oldies know if that covers factor v leiden?) .
You would only need genetic counselling if there was an issue. If it comes back normal then I don't think you'd need to see anyone. It really is quite rare (less than 5% chance I think), so try not to get too worried about it. Sounds like he's overstating the likelihood a bit. Far more likely that you'll be 'unexplained' (50% chance - which sucks), but I completely understand the need to know. I was exactly the same. Actually 500 is less than I expected.

I'm surprised the consultant said testing the tissue wouldn't help. Coventry think the opposite. Testing on the embryo would tell you if it was caused by something like an unbalanced translocation, but also whether it was chromosomal (downs or other trisomies). This can help them decide if it was a random event, or if there is a different cause. Some people find it can also give them some closure to know. Is the consultant you saw a rmc specialist?

He did say only a 2% chance, I'm probably over thinking it tbh!

I saw Philip Owen- a gynocologyst, he was very nice and seemed to know his stuff but possibly not a specialist in rmc. www.nuffieldhealth.com/consultants/dr-philip-owen

I wish I had known all this last week so I could have pushed for the testing :( I think deep down I thought that because there have been 3 now then the chances of them all being chromosome related is unlikely and it would depress me more to know for sure that they were healthy.

He also said the progesterone for next time should be started at 5 weeks and the posts on here lean towards starting earlier than that. Really thankful that I can speak to Coventry in a couple of months as it sounds like they may differ.

Hi Lou I went to Coventry in April this year after 3 miscarriages. I had the biopsy/scratch which revealed 7.9% uNK cells. I was prescribed progesterone to take from day 21 to day 29 I have 29 day cycle. Also prescribed pred and heparin. I can't take the hep though as suffer with nosebleeds and blood spots. I started the progesterone the cycle immediately after my visit to Coventry but unfortunately I suffered a weird 7 day bleed of very watery bright red blood. Then two days after that had a very positive pregnancy test. Went to EPU in Oxford and they couldn't see anything on the scan. I also went up to Coventry and was scanned by professor Quenby who also couldn't find anything on the scan and told me the pregnancy wasn't viable. My hcg was monitored by Oxford until they confirmed it wasn't ectopic and a pregnancy in unknown location and I miscarried nearly 10 days later. So just personally I've made the decision not to take progesterone until BFP. What difference it'll make who knows. I've been awaiting an operation for something unrelated to RMC for a while and been suffering with chronic pain with it since June so haven't been in any position to be able to try again. Now recuperating from operation. X

The Coventry protocol is to take prog from cd21/7dpo. If you don't fall pg within 3 months then you just start from bfp. The theory is it makes your uterine lining more selective. One of the issues I have is hyper fertility, so I implant eggs that a normal person would reject, meaning I get pg very easily but some of them aren't viable. This is part of coventry's theory. I didn't have a successful pg after 3 months so started it at 14dpo this time, and this pg worked for me (so far). I think the sooner after bfp the better, but also think that it really helps some people and others it has no effect. Problem is it's hard to tell what camp you fall into! I suspect I fall into the no effect at all camp, but I still took it, as research shows it doesn't do any harm and I'd rather take it and not need it than not take it if I did. Problem is that even with a day 21 progesterone test, you might test normal for prog levels but it's not just about your level, it's also about how your body processes it (or this is how I understand it), so you could have a normal level but your body could be not be very good at using it.

Anyway, I think from bfp is fine. If you feel you may be hyperfertile (fall pg very easily) then you might want to consider from cd21/7dpo.
Ps sorry if i made you regret not having the testing. It's so hard to know what to do and none of the specialists seem to agree. You just have to go with what you're told at the time. They may have found nothing from testing, particularly at 5 weeks as I think it's more difficult to get a result (and they probably wouldn't have agreed to test no 1 and no2 because of their stupid rules), so you may have been no further forward even if you had had testing.
This journey is full of regrets for me, but you've just got to try and keep going and not beat yourself up about what might have been.

Onestep- thanks for sharing your story, it definitely gives different spin on why some doctors will have differing opinions of when to start progesterone.
Marchgirl- I'm the same, pregnant first time twice and the other 2 times when it took slightly longer I suspect chemical pregnancies. I asked the consultant after hyper fertility and he dismissed it. The only study I could find was the one that the bbc reported on last year and it only involved 6/ 12 people (I think) so they felt too small a trial to be conclusive, it definitely made sense though!
I'll just need to see what they recommend for me- they certainly sound like they know what they are doing and have the benefit of seeing what has and hasn't work previously!

hello dearies. no i havent had any further bloods or scans. As advised, I'm sitting tight on it. I had to stop aspirin on two nights and that has eased the spotting a bit. Have any of you had such management as i feel so scared to be off aspirin.. Any of u on steroids? marchgirl i know u r..what dose u r on? Do u take omeprazole with it? If u cant have heparin, r u just on progesterone and pred? xx

Hi ellie, I was on pred 20mg daily, prog 400mg twice daily and heparin. I think it was onestep that couldn't take the heparin. I never took omeprazole. Isn't that some kind of reflux med?

lou, sounds like coventry might be worth trying for you. I'm not sure exactly how their hyperfertility theory fits in with the high uNK, but it does somehow. I really wish they would get round to doing a double blind trial. They are doing research, and have done a small scoping trial that showed for people with high uNK, success rates with treatment was 60% compared to 40% without treatment, so not insignificant, but until they've done an official trial, they can't introduce it as an approved treatment for rmc.

thanks march. Why were u on heparin? I've heard that coventry starts all women with rmc on heparin from bfp, regardless of their thrombophilia status to help placental perfusion and they do not believe in aspirin. Is that true? Do u think heparin made a difference for u or the pred or the combo? x

march yes it is reflux med but is given as 'gastro-protective' with prednisolone as was written in my plan but i m not taking it as its additional med ':(