Recurrent Miscarriage Support Thread 16 - tests, treatment and 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 :)

Hi monten. As many of us have said before, I'm sure you have mixed feelings about the results. Glad for you that there is nothing major (or untreatable) wrong, but sorry to hear you are similarly without diagnosis.
I also just got the results letter and it said at the bottom "we'd be happy to support you through any future pregnancy", but said nothing about how they'd do that and she'd already told me she wouldn't see me again. I phoned up the Secretary and asked how I could get in touch and she told me the consultant was very busy but if I emailed her, she would pass it on and hopefully she would find some time to reply to any questions.so really, they aren't actually supporting me! Not sure about the trisomy thing but sure someone else will be along to help

Wowzers this thread is moving so quick. Rather than taking notes I think a daily summary updates need to be sent pulling all our updates together- any volunteers? ??

I went shopping on the day of my first due date.... Went for a skirt and came back with new kitchen... Oops.

Small step forward for me Aff arrived on time today for the first time since the first mmc. I'm taking it as a sign as my body is getting back to normal. Hopefully x

Hi, I've just had my 4th MC, my 3 pervious were all at 5 1/2 weeks. This latest I was told to take baby aspirin-which I did, but this time I MC at 5 weeks.
I've had numerous tests and all have come out negative. Even my GP says in her words 'You're extremely healthy' which told me nothing!
I'm seeing gynae and have had all the physical tests incl HCG and all return 'normal' results. I'm 39 now and becoming increasingly frustrated as I feel time is rapidly running out for me.
I've asked the gynae about the possibility of progesterone but I get nowhere and even my GP is surprised about this.
Does anyone have a similar story or advice as to what i can ask for next? I'm seeing my gynae in two weeks time and I want to be 'armed' with the right questions to ask.
Any ideas/advice would be great!

Eva so sorry you've found yourself here everyone is lovely and keep me sane frequently! Where abouts in the country are you? In my experience it was all about finding the right person to listen and up to then I was banging my head in frustration.

Hi Eve. Sorry for your losses and that you find yourself here. I'd maybe have a look at finding a second opinion somewhere else. If you say where you are there'll be lots of very passionate suggestions (particularly if you live anywhere near Coventry).

Something I haven't mentioned before as it happened before I discovered mumsnet was my misdiagnosis of lupus anticoagulant that occurred after mc 2. They only did the blood test once when I think they're supposed to do it twice to ensure its not just a random fluctuation. Anyway I was prescribed heparin in pregnancies 3 and 4 and I always wonder if my blood was 'too thin' if that's even possible. At St Mary's I wasn't high on either test. Not sure why I've sudden ranted on about that - I think it's in support of specialist miscarriage services as opposed to more generic gynaecology.

I'm lurking on the Sept 15 thread again. It's so alien it's almost like watching a wildlife documentary! They've lost a lot of people recently though which is sad.

Monten and March that is exactly what is freaking me out. That I'll get to appt and be told "nothing wrong with you"

girlie good news about post mc AF (if that's right thing to say)

No idea when to expect mine....

baking poor faith with the steroids. Really hope the upcoming tests mean she can start to be weaned off them soon. How are your nights - are you getting much sleep?

longest you are definitely too kind to me (but thanks)! I am constantly fighting off various types of neurosis, and things being lost in translation in posts is one of them. No. Its not bad to have a day to yourself - you deserve it and sure your DD will be more than fine.

ourday I never had bruising. Unless on it for an actual blood clot though, the dose is relatively low (as I was told). I wouldn't read anything into your medical situation from it though, even without heparin people bruise differently.

brummie hugs for tomorrow
march hugs for having to listen to those insensitive comments

twilight in my experience keeping busy is the only way through. Hope the days pass quickly, and the emotional rollercoaster is exhausting I am sure. Today you are pg.

flower grr to gp saying no testing.

monten the normal results are frustrating in a way, I know. But having a normal karyotype is encouraging. I think I was told by a genetics specialist that any chromosomal abnormality mc, makes you very marginally more likely to have another, but only very marginally. (I had a T 22). I'llvtry to remember to ask her when I speak to her again.

Eva in my experience gp's are a bit clueless with RMC. Is there a RMC clinic your gynae can refer you to? Or is the gynae the RMC specialist? So sorry for your losses. Also sorry to be brief - I need to start logging on here earlier!

twilight what dose of heparin were you on?

Lots of AF around today - me too, exactly 4 weeks post erpc. I feel oddly comforted that my body seems to be back into its cycle so quickly.

Hi everyone, thank you for your supportive replies. Had every blood test known to man (or that's how it feels), and all results come back normal including lupus.
I live in kent so Coventry is a long way away, but have hear about prof Quenby and if all else fails I'll be paying her a visit. Gp has said I'm a perfect candidate for Ivf but I want to exhaust all other avenues (If I've got time) before we go down that route

eva Why on earth would you need to do IVF? ( unless they are talking about PIGD which is ££££££) You do not appear to have any problem getting pregnant! In fact in common with quite a lot of us it sounds like you get pregnant relatively easily. Part of the Coventry theory is that there's a balance between 'receptivity' and 'selectivity' of the uterine lining, and that some RMC women have linings that are too receptive and not selective enough. Optimising conditions for implantation redresses the balance so only a decent embie can settle in.
If you decide to see Prof Q you only have to travel to Coventry once, most of us have been over a hundred miles away but there is nowhere else doing the same work. It's a one stop clinic for your consult, scan and biopsy, then they phone you with results and give you a written protocol. You should be able to get Meds from your GP or gynae and any scans etc in your next pregnancy locally.

Wow! I had no idea it was as simple and quick as that!
I'm going to see my consultant next tues so depending on what she says I think a trip to Coventry will be in the cards.
Do you simply contact them via their website or do I need to be referred?

Eva, just email Kerri, the clinic secretary. Details are on their website.

cat love your froggy!

Eva I went to Coventry from London, then after BFP my lovely GP and the EPU sorted the meds out... One of the EPU nurses is lovely and was telling me after my MC5 when I was saying I was going to go to Coventry for a last attempt how she had been to a conference where Prof Quenby was speaking and what a wonderful woman she was...

So I knew at least the EPU would be receptive...

Thinking of you today brummie x

BIG hugs to you today [brummie]

[sun] this is the second time ive read about your holiday ordeal and im as angry as I was the first time I read it. Why are people such fools? Do they seriously think theyre doing the right thing? [March] youre not being remotely sensitive, I cant believe your friend said these things either. Ive learned to expect it now. One of my close friends who knows about my 3mcs said of someone elses mc Its just nature I suppose which really wound me up. This friend had IVF to have her little boy, im sure she would have hated it if someone would have said that her being unable to conceive without the IVF was just nature, I suppose. People just do not think.

[boozle] you do make me laugh, im sure some of the robots here dont have sex either and im lucky that there are no work pregnancies here.

Thanks [flower] your MIL sounds like mine, I am still avoiding mine . The GP 2mcs thing is really annoying, I always wonder if the GP herself would wait for her third before a referral?

I dont have any experience with trisomy18 [monten] as none of mine were tested but I did get the all clear from my results. I didnt get them in a letter so im not sure exactly what was checked. Sorry, im not much help at all. I got pretty much the same answers of just try again which I said I wasnt happy with, I mentioned Coventry (he poured scorn on it as expected) and at that point he said hed let me have progesterone pessaries from BFP, he was against herparin etc due to normal test results . I was also told as [march] that I could email if I had any questions. So, after taking everything in, when 5 weeks pregnant I sent him (and his secretary, poor her) a long winded and graphic email about things that happened with MC3 that I forgot to tell him in my appointment. He must pick up his emails because approx. 5 days later I got a call from the RMC nurse to say I could be started on fragmin. So ive never had a reply direct from him but he must do something with his emails.

[eva] I would also ask for a second opinion, they say it cant hurt to try it so keep going until you find someone who says yes. And yes there is Coventry if thats an option for you.

[twighlight] glad the waiting is passing quickly, I have everything crossed for you, hope youre ok.

[baking] still thinking of you and faith.

Apologies if ive missed anyone, this thread is so fast!

brummie hope today goes ok. Thinking of you.

Thinking of you today brummie

Thanks all. Can't believe today is here. I really thought I'd be pregnant by the time I got to this date... Nevermind losing 2 more!!!!

Sooo glad I'm not at work...

So I've hidden in bed this morning but got up and had runny eggs and toast. Will be having coffee and cake later with a definite drink tonight.

Going clothes shopping followed by acupuncture. My philosophy is going to be I may feel shit but at least I look good.

Plus not bought any clothes for a long time as we've bought house so been good boring plus being pregnant meant it wasn't worth it.

Yeah fuck that. That ship has sailed !!!!
New spring ranges?? Don't mind if I do and will probably cry later

Thanks! I feel so much better for this. I'll def mention prof Q next week!

brummie Hugs. Hope you're getting through the day OK, your plans sound lovely!

Monten My last mc was a trisomy 18. I have not heard that there is an increased risk of this happening again, my consultant did not mention anything like that! Did they refer specifically to trisomy 18, or just trisomies in general? That I might expect, but then again, the risk of chromosomal abnormalities is always there... Something we unfortunately have to accept. In fact, my last 2 mcs were due to that, but then again, I am ancient! My consultant was very positive about my chances for a successful pregnancy - however, I will ask the one that I am going to see tomorrow, if he can be more specific about this!

eva Welcome, sorry that you find yourself here. As others have said, I'd be weary about trusting your GP's advice, in my experience, they know f* all about miscarriages and anything that comes with it (sorry to be blunt). Getting as many tests done as possible is a good way to start, gathering as much information as possible. Good luck!

twilight Unless you were heavily overdosed on heparin, I don't think that this could contribute to mc. It's quite universally accepted now that heparin has protective function during pregnancy, so I don't think that it could be a factor.

I've now come out of SMEP (DH was a bit disappointed that there was no dtd last night, but I'm close to having to walk like John Wayne, I need a break!). Looks as if I did ovulate on Saturday, so my timing should be spot on.
And so the 2ww begins...

brummie make the most of today!

cloud you just made me
Good luck!

Thanks-will do!

Good luck Cloud

Haha cloud. I know the feeling. Think I'm a day later than you as I only got my temp rise this morning, but can't be bothered doing any more! Fingers crossed for all of you fellow 2ww buddies x

I'm approaching 'crucial time' this week so am girding my loins . It's like a game of poker tho isn't IT - hedging your bets on when ov day will be. Doing enough but not too much so that dp can't keep it up if ov is delayed. Pun intended

cloud it did specifically mention trisomy 18, but said the increased risk was very small. I'll get the exact wording off the lette when j get home.

Sorry you're here eva and for your losses. Agree that sometimes you need to take things into your own hands. Good luck for your appt x

Justonemoretime- I've emailed Kerri at Coventry today . I feel so much better for taking positive action.
Thanks to all of you for telling me about prof Q, fingers crossed things can start moving now!