Recurrent Miscarriage Support - tests, treatment, trying again - thread 9

[bakingtins]

Welcome everyone - pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of information, moral support, tea or sympathy. Newbies very welcome.

Can we start the thread with a recap of where we are all up to again, please?

I had my DD when I was 38... TTC again... but as i had 3 mc before her I don't think age is the only factor

Hi baking tins
I had my 4 miscarriages after having our daughter.
Thanks for your advice about other issues we will definitely start looking at other possible reasons.

Good luck with the remainder of your pregnancy.

Hello everyone. I posted on the main board earlier today but figured here might be better?

We've just been through the 3rd miscarriage in 12 months. 20 months of TTC altogether. First MC was BO - found out at 12 week scan and had ERPC. Second 2 were both natural. 6 weeks and 5 weeks respectively. I started bleeding on Saturday just gone with the latest one.

I have no DCs, H has 2 from previous relationship, DSD is 11 next months and DSS is 14 in June, so hardly babies.

I've been referred to the RMC clinic at Darent Valley Hospital, not really sure when the apt will come through, I've been told about 8-10 weeks. We're taking a break from TTC which is hard in itself.

I just wondered what I can expect from the first appointment? Any advise / experiences are appreciated.

Thanks x

Hi Seasalt and welcome. You should both attend the appointment, they will want to talk through any gynae history and ask about any family history of miscarriage but also diseases like diabetes/thyroid disease. The tests are mainly blood tests, they will want one tube from your DH for karyotyping (testing for genetic problems) and an armful from you. You may need to go back for hormone tests timed to your cycle, FSH/LH on day2, progesterone a week after ovulation. You prob also need an ultrasound scan, which is normally done mid cycle.
Having a break isn't a bad thing, it gives you a chance to recover physically and emotionally, and hopefully be ready to try again with a plan in place. They find something on the NHS tests in 50% of cases. It might be worth thinking about what your plan b is if they don't find anything, we had a 4th MC on their 'can't hurt' treatments before going private for immune testing. That was the right decision at the time but obviously now wish I'd done the immune testing straight away (didn't know about it, thanks Mumsnet...)

going for my scan in a bit to check everything is gone and my mc5 is complete... then it will just be a matter of waiting for 1 more AF and then crack open the ovulation sticks to book the appointment with prof Q

Thanks Baking that's really helpful.

I'm struggling today, I like to be in control and as we all know, I can't control anything about this!

tilted uterus, adiposity, bla bla difficult to see but it seems the lining is still thick. then they did a preg test and it was still faintly positive...

but she thinks no intervention required so i should be free now...

Hi I haven't been on for a while but I need a little reassurance and advice.
Baking tins, you seem to be the one that knows everything :)

I had 3 consecutive early mcs/chemical pregnancies in nov,dec and jan.
I went to have a scan during the jan one and the mc nurse said I needed to get referred to the specialist and have feb off trying.
I did that, and had my appt with Prof Quenby at the end of feb.
She sounded very positive and even said see you in a few weeks for your 6 week scan, but she did also say the first month it might not work. (She put me on cyclogest pesseries 400 twice a day and this month I fell pregnant again.)
Unfortunately again the tests started to go lighter, so I had a blood test and it was negative at 5 weeks. I came off cyclogest and am currently going through my bleed.
I'm getting really really disheartened like this is never going to happen!
Prof Quenby has told me to carry on this month and pesseries for 3 months total, then she'll try something else.

Has anyone else been through something similar?
I have a ds who is 2y7m and I had no problems at all with him, so I am so confused what is going on.
I just feel so sad all the time :(

Choccy I'm so sorry you are having such a shitty time. What tests did Prof Q do? I saw her at her implantation clinic as a second opinion when I'd already had all the standard NHS tests but I guess she also does all the normal blood tests etc? did you get all your results already or were you given the all clear to TTC whilst you waited?

tiny that sounds like good news in the circumstances. All the best for your trip to Coventry.

Baking thanks for your reply. Prof Quenby did no bloods or any tests or ask many questions if I'm totally honest.
I had all the usual rmc blood tests through my gp and she used those.
We literally saw her for 10/15 mins (she had me and dh in stitches and we came out really really positive) just asked about how far I was along etc when I lost.
She said I clearly don't had a problem getting pg it's just keeping it stuck hence the progesterone.
It really is shitty, I should be 5 months pg now :'(

I'd get back to her (email her secretary Kerri) and ask what next. I know part of her research is to do with taking progesterone from CD21 to assist implantation, but the other major component is the NK cells work which is based on a uterine biopsy. There is a theory that some women are 'hyperfertile' so get pregnant very easily but let damaged embryos implant which have no chance of developing, whereas a more discerning uterus would never let those get to the stage of a positive preg test. I was told that was me by the first RMC consultant I saw, then in my next MC they tested and showed it was genetically normal. I think tanny has also been told this is likely to be her problem. I'm not sure I believe it, TBH, how unlucky would you have to be to have 4-in-a-row with genetic defects? Particularly if your karyotypes are ok?
The NK stuff is not normally funded by the NHS, it costs £350 if you self refer. I don't know if she does it on NHS for existing patients though? Worth asking!

Hello
Thought I should join. Had some bloods taken today for clotting (6 tubes?!) at the midwife appointment and some blood from OH.

I asked if they check glucose and thyroid and she said no, with no real explanation. Didn't see a consultant yet as apparently you only see her after your bloods and if they find something wrong.

Didn't get to ask about the spotting that I'm still having occasionally ( 7 weeks on) either :( its a bit weird like lots of ewcm with small amounts of bleeding?

Should I go back to my GP and ask for thyroid, glucose and whether he can send off for NK testing privately? (I'm in scotland)

Eek - another BFP, can't believe it, this is the 4th in 8 months! Obviously, the last 3 perished - could this be the one? How can I keep it alive?!

This was 1st cycle post 5 w m/c in Feb on 15 Feb. I think I'm 11 dpo, or at least 11 d post +VE OPK.

The CB Digi this morning was -ve, but then I got home from work and did a FRER - v. strong +ve. (It was a FRER from a twinpack, I tested BFN a week ago on the other test, and accidentally binned the unused test along with the packaging - so I fished it out the bin tonight when I realised, peed on it and it was a BFP.)

I will go to GP Mon am and see what can be done - even just to ask about HCG tests to see what levels are doing..

I have been referred to the RMC specialist, had done the CD21 Progesterone test, but haven't got to the other tests yet..

I have some cyclogest in the house - should I take it anyway? I'm taking low-dose aspirin anyway, have done for a while...

Hi hippo glad you decided to join us. GP should certainly be able to test glucose and thyroid, it would be part of a very basic blood screen, and v surprised thyroid wasn't checked as that's amongst the common and easily treated causes of RMC. I have diabetes in my family so not sure if that's why I was tested but it's a v simple thing to rule out.
The NK cells is not available on the NHS, the only people I'm aware of testing are Profs Quenby and Brosens in Coventry, who use a uterine biopsy, and Drs Shehata, Nduke and Gorgy in London, who all use blood tests. You could try asking on the pred thread on the conception board if there is anyone in Scotland, or contacting the London doctors to see if you could be tested 'remotely'.

Cautious congratulations sherry I was on progesterone the last 2 pregnancies (this one successful, last one not) and if I'm honest I think it's the other treatments that have made the difference for me, but I think everyone is agreed the only possible harm it can do is to prop up a failing pregnancy for a while, so as long as you will be having early scans so you know if things have gone wrong I don't see any harm. My protocol for the successful pregnancy was 400mg twice a day from 7dpo. I'd get in touch with the RMC and let them know you are pregnant. You probably won't be able to have the remaining testing, or not in a timeframe that's useful, but they may be able to offer you early scans/monitoring. Good Luck!

Hi thanks! That's what i'll do, call rmc clinic and gp on monday and take aspirin and cyclogest in the meantime. And chill..! X

It's been ages since I posted last and the thread dropped off my list.

I'm still here and reading, but I seem to be lacking in news or advice.

I promise to de-lurk if/when I have something interesting to say!

Hi tanny good to hear from you. Are you back at work now? How are you coping?

jbd and other that have had it, how did you get the progesterone prescribed after your miscarriages? Was there any specific test that showed the need for it?

I was told explicitly they would not precribe it all because the PROMISE study is not complete so not proven. But I want to take it, along with aspirin, as I know from others it helps... Would really appreciate any advice.

Hi Baking I'm still off work for the rest of the week, and have been feeling amazingly stressed. There are lots of reasons for this, but cumulative effects of the MCs is the main one.

I have started to question whether I can continue trying. And then that makes me cry. Pfff.

Re progesterone, my consultant prescribed it along with aspirin and high dose folic acid as a "can't do any harm" measure. My GP was also willing to prescribe it. I'm not sure how to get someone to prescribe it as it was just offered, but it sounds as if getting a second opinion might be useful.

I don't know what the outcome of the study will be, but I intend to use it again.

My GP was happy to prescribe progesterone on the recommendation of the local RMC consultant and then Prof Q.

tanny have PM'd you.

silverine My RMC consultant wrote a letter to my GP, saying that they should give me the progesterone when I get a BFP. Can you get in touch with them to ask about it? I would go to your GP asap and tell him/her about your history, they might give you the progesterone there and then, like baking said.

tanny Sounds as if you are having a rough time I really hope you are having lots of support. Have you thought about a long holiday somewhere exotic, to maybe take your mind of things? Remember, no one can force you to make a decision about ttc, take all the time you need.

Hello everyone else! Hope you are all hanging in there, don't give up hope.
I am having my 12-week scan today, and I cannot believe that I have actually made it this far. I'm still nervous, and every scan or medical appointment sets me off, but I have -cautiously- started to believe that it might actually happen this time...
Told my mum when we saw her last week, and this weekend we'll tell DH's family at a big get-together, eek!

Hello

Like tanny have been a bit absent...

Took to running again and saturday went on my local parkrun. did my 5k - much slower than usual - but it got me out... no mean feat considering exactly two weeks earlier I was curled up on the toilet contracting and passing my 5th failed pregnancy...

As it will probably be 2 months at least before I try again, I hope I can pick up the fitness and get better in my running...

Hi all
It was the RMC consultant that said he wouldn't prescribe the progesterone, as it's not proven, even though he admitted it does no harm either.. And the GP just said they wouldn't prescribe it either if RMC will not...
I can have the progesterone sent from family abroad, I just wanted reassurance it's fine to take if not prescribed. Having 21 day progesterone tested this month but gather u can take the supplement regardless of result..?

Hi all

Apologies for just coming up with lots of questions and not commenting much. I have been following the thread but have little to advice others, as no successful PG behind me.

baking thanks for all your advice, it has been REALLY helpful indeed. How are you getting on? Had any milestones lately?

tiny well done going back to running, it's probably a good way to get your mind off things... Have you booked your appt in Coventry?

tanny a holiday sounds just like what you need. It can be really disheartening indeed. Please try and stay positive, no pressure to start trying again immediately.

jBrd how did the scan go today? FX all good news!

sweet I fully understand the wanting to do all you can to make the next PG stick.

I have has 2 MCs and a chemical pregnancy just last month, but they would not count it as MC3. Still I am trying to put a plan of action together for a next PG.

I had some investigations done abroad, but nothing really wrong has been found so far. Still, the consultant said to take:
High dose folic acid, which I am
Low-dose aspirin, which the consultant here said is not needed (as thrombophilia ruled out) but does no hard, so I have been taking it
Progesterone, but I was told here they would not prescribe it so I am considering having sent and taking it anyway. I was given Utrogestan by the consultant abroad though rather than Cyclogest, not sure if it makes a difference...
They also suggested Intraveinous immunoglobulin therapy upon a positive PG test, but was told it was not offered in the UK. Anyone had this prescribed and know what it's for?
I've also been going to acupuncture. Anyone else tried and found it helpful?

It is really hard psychologically though. It's really become all-consuming to the point where I can't concentrate at work (I write report so need to think clearly...) and falling behind with work.... Not sure there is a way around it though. The GP suggested councelling but have not heard back from them yet.

You hear time and again that it's when you "give up" that it happens but I don't really want to give up yet and not trying feels like I would be leaving time slip away...

Sorry about the long post, just needed to get it out!!

hi silverine assuming utrogestan is a progesterone pessary rather than one of the creams I wouldn't think the brand makes any difference. IVIG is used by some of the London doctors to treat high NK cells, it's not available on the NHS and even for them seems to be what they use when they've failed with pred, intralipids, hydroxy etc. Worth asking about it on the pred thread over on conception board, they will know more about it. Surprised at it being suggested as an "in case it helps" though.
My 4th MC when I has no diagnosis I was on high dose folic acid, progesterone and aspirin, with an NK cells diagnosis that changed to folic acid, progesterone, pred and clexane (heparin injections) and that it what worked for me.
It's v hard not to be consumed by it, it colours everything you do. You are always planning for future events with a "what if I'm pregnant/in my danger zone/having another MC" in mind. I have never wished so much for a crystal ball, the heartache is all worthwhile if you knew there was a baby in your future, on the other hand if you knew there was no hope you could move on and explore other options, it's the uncertainty that is difficult to live with. No answers to that one, just bucketloads of sympathy, it's v tough.
I had 30 week MW appt yesterday and all ok, baby has turned head down after being transverse for a while which is a relief. She's a bit small so being seen every 2 weeks from now on and have another growth scan in 4 weeks, but my other children were fairly little so not to worried.