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Recurrent Miscarriage Testing, trials and tribulations...Part 7!

(988 Posts)
squizita Fri 07-Jun-13 19:04:04

Hi all, carrying on from part 6. All kinicker-checkers, blood-testers, clinic-attenders and finger-crossers welcome. Nothing but love and crossed fingers...

PicardyThird Tue 09-Jul-13 20:25:31

Baking - FWIW, the sense I got from Coming to Term - which I found an excellent read for the most part - was that it is indeed more complicated than that, almost inextricably complicated in some cases. My own experience is also anything but straightforward - despite having had 5 mcs I have never yet reached the technical definition of RMC. I have two diagnosed clotting problems but had two children prior to diagnosis. I have two children but lost definitely one baby and perhaps more to chromosomal issues. All I really know atm, prior to seeing the geneticist, is that I have shit but not hopeless odds.
Lots and lots of empathy and unMN hugs. I am very much teetering on the brink of making that 'no more' decision, and in the dead of night it seems like the best thing in all sorts of ways, but I can't yet mentally cross that Rubicon yet. I've assumed for ages that I would have three eventually. It's so hard.

Squiz, sounds positive (although i do get the feeling on seeing the blood - love to you) Tea, still got everything crossed for you. Nearlyready, welcome and I am so sorry for what you've been through that has brought you here, although you have definitely come to the right place.

I'm a day or two late, but tested negative yesterday. confused

Bakingtins Wed 10-Jul-13 07:18:21

Read that one too! blush The fact that it seems to be "shit but not hopeless odds" is what makes it so hard. There are so many success stories that nobody can really explain. If we give up I think we will always wonder what would have happened if we tried one last time, but on the other hand we've just had enough. I've been miserable for most of the last 2 yrs, either because TTC is not working, or because I'm pregnant & terrified, or because I've MC again. Miserable people do not good parents make! It's not fair on the boys. But as you say, Picardy it's very hard to let it go.

donttrythisathome Wed 10-Jul-13 21:33:20

Hi, just checking in. I've been on holidays, and also mad busy in work.

nearlyreadytopop, sorry to hear about your losses and welcome to the thread.

Baking, maths is not my strong suit. I think that there may be undiagnosed causes which may not affect you each time, but I have not looked into it all in your depth, or any depth at all, or in fact, AT ALL.
I am sad you and Picardy feel you may be at the end of the road. It's a tough road.

I have an appointment with Dr Shehata on 16 Aug. No word back on the "products" testing.

Got my period but has lasted a week and a half so far. Think I should go for a scan to make sure no retained products. Am also fed up as haven't been sifted in for a promotion at work. Feel like going off with stress - why work so hard at something I dislike when I am not valued? Answer: money. Feel like a failure on all fronts.

Squiz, hurrah for AF.

Sorry to everyone I have not namechecked. My head is all over the place and I find it hard to keep everything straight. I am not one of the supportive ones on the thread!

squizita Thu 11-Jul-13 10:46:13

Donttry You are supportive! Don't feel bad for feeling bad, life is extra tough sometimes. flowers

Baking & Picardy such a hard time for both of you sad sending you good vibes. TBH I have suggested to DH that if (he replies says "when unless Prof Regan tells you otherwise misery-guts") we get out THB he will have to lose a couple of lb and spruce up the house because I'm seriously wondering whether I could do it again and again for a 2nd and if we want another I may well adopt. Until the tests come back I won't know. It's a hard enough situation when planning ahead with no kids yet to worry about, just managing our expectations/prognosis ourselves... I can't imagine how challenging it must be with a family to consider already.

donttrythisathome Thu 11-Jul-13 11:23:09

Ah thanks squiz. What is THB and why lose a few lbs and spruce up house (is it so you can adopt?). You might not have to go through all this at all for a second one, it might be as easy as pie! You never know - my first was a dream, no hassles at all. This could be you! I do think having a child already makes it easier not challenging, not that I want to get you down.

Purplefrogshoe Thu 11-Jul-13 11:29:29

Hi all, had my 3rd ERPC after miscarriage last week, had a horrible time in hospital, can't really face any tests at the moment but can anyone tell me what they involve? I don't know if I can do this to myself again sad

Bakingtins Thu 11-Jul-13 11:54:47

THB = take home baby (?)

Hi purplefrog I'm so sorry you are joining us, but you are very welcome. My take on the whole thing was I wanted to have the tests, if there was something that was simply treatable then we'd try again (e.g. thyroid problem or the clotting problems that can be treated with aspirin/heparin) if there was something that was untreatable and likely to recur with each pregnancy we'd give up. Unfortunately we are in the 50% that are left with no answers after the NHS tests and we've since had a 4th miscarriage, so am now back at the point of trying to decide whether to go private for the reproductive immunology testing or call it a day.
It's a very personal decision.
The standard NHS tests are likely to involve you donating an armful of blood, and your partner one tube (unfair, as in all these things) as they'll check his karyotype. You may need a uterine scan or more invasive tests to check for anatomical abnormalities - this will depend on the stage your losses occurred at and whether you've ever had a healthy pregnancy.

Squiz I don't think you need to worry about weight or sprucing up the house to consider adoption unless you/DH are morbidly obese but no reason to tell your DH that if you want the hall painted or to get him to the gym We've looked into it a bit but I think it is far from an easy option in terms of the invasiveness of the process of being approved, the reluctance of many agencies to consider potential adopters who already have birth children and the problems that many children who have ended up needing adoption come with.

I don't think having a family already makes it easier to cope with RMC, just different. You don't have the fear that you will never have children, but you do need to consider the impact on the existing family of any decisions you make.

Donttry good luck with Dr Shehata. It's crap to be passed over at work. It would help if one area of your life was going brilliantly.

squizita Thu 11-Jul-13 12:28:59

Yeah THB is lingo from other boards 'Take Home Baby'.
DH has that 'thick-set' kind of male frame where on paper he is much more overweight than he is (if that makes sense?) - muscle + beer belly on top. He's not deadly obese! grin
I know of some people who have birth children and adopted, would go to them for advice if it came to that. In terms of difficulty of kids, we both work with LAC (Looked After Children) so are familiar. DH with real bad issues, me with the whole gamut from happy to troubled.

Of course, hoping that either St Mary's will say "you have xyz, this is the treatment and % risk" and we'll know OR they'll say [^and it will be^] "you were unlucky".

squizita Thu 11-Jul-13 12:30:34

Oh... sorry if my post wasn't clear. I really don't know how much harder it would be if I already had a DC as you say, choices wouldn't just impact on me and DH but another life too.

donttrythisathome Thu 11-Jul-13 14:43:48

Purple, so sorry to hear about your mcs. I was where you are now at the start of June. How many mcs have you had? Have you any children already? I got tests after my second mc (just standard NHS ones for clitting diseases etc) which was a bloodtest, then after third mc last month tissue was sent off for karotyping (genetic testing), and I got some tests at the GP (more bloodtests). My DH has not been tested at all. I am going to Dr Shehata in Surrey for a second opinion next month (on the NHS) as he specialises in immunology I think and I have an autoimmune disease.

Ah take home baby! Thanks. Yes, sorry a decision to adopt or send squillions on treatments, or get majorly stressed/depressed about multiple mcs, or a decison to give up so your child will definitely be a n only child would of course impact on existing family so it is a different challenge rather than easier I guess. Or maybe it depends on how you feel aboiut it/your personal circumstances. I know I would have found this much harder before I had my daughter.

Glad your DH is not morbidly obese squiz!!

Bakingtins Thu 11-Jul-13 20:54:52

In other news, my private consultant phoned me today to discuss how I got on at the RMC clinic and she thinks I should see Dr Quenby, and in fact had contacted Dr Quenby on my behalf to ask her to send me information (which I had already got for myself)
Very kind of her to still be taking an interest since I've been passed back to NHS and she's not likely to see any more of my money.
So there you are, some doctors do care.

donttrythisathome Thu 11-Jul-13 22:34:35

baking, what a nice woman! NK cells do seem to be the one thing you haven't tried(can understand your reasons why). Do you know if Quenby tests these on the NHS or will you have to pay. I must look into whether Dr Shehats who I am seeing does. Unlike you I have done next to no research. I'm not sure why as I am usually researcher supreme, in fact I research for a living. All this mc stuff oddly bores the life out of me...odd odd odd.

Purplefrogshoe Thu 11-Jul-13 22:42:40

Thanks baking and donttry, i have dd who is nearly 5, i had the blood test after 2mc and all my results were ok but DH wasnt tested, they just said it was bad luck, i will make app with my GP, sorry to all in the same boat as me xx

Bakingtins Fri 12-Jul-13 08:05:06

Nobody does NK testing on the NHS. Dr Quenby does it for £360 which to see her, have a scan and the test isn't bad.

I wish I could ban the phrase 'bad luck'. What a load of old cobblers. Miscarriages happen for a reason. It might be a randomly occurring chromosome problem, and it might not happen again, but I hate the dismissiveness of saying 'you were unlucky'

purplefrog can you remember what you were tested for?

squizita Fri 12-Jul-13 08:06:23

baking That's very kind of her. I'm really glad for you.

Purplefrogshoe Fri 12-Jul-13 09:51:19

I don't know what they tested for, I'm going to ask when I see gp next week as don't think I can just TTC again and keep my fingers crossed it doesn't happen again especially as I had such a horrible time in hospital this time

Bakingtins Fri 12-Jul-13 13:20:21

I'd go armed with a list of what should have been done, my GP was pretty clueless but was happy to follow the instructions of the consultant.
I had;
Full blood count and ferritin (not so much for causes of miscarriage, just as a screen after blood loss)
Thyroid tests, t4 + tsh
Day 2 hormone tests, fsh + lh
Panel of tests for antiphospholid syndrome and clotting abnormalities and autoantibodies
TORCH screen (blood tests for infectious causes of miscarriage)
Swabs for infection
Karyotyping for me and for DH
Antimullerian hormone (not available on NHS, it's a test for PCOS and ovarian reserve)
Cytogenetics on the baby
Mid-cycle uterine scan for anatomical abnormalities, to check suitable thickness of lining and to check for PCOS

I'm sure the others will pipe up if there is something I've forgotten.

nearlyreadytopop Fri 12-Jul-13 13:50:46

tins thanks for that list. I'm due at the hospital in 6 weeks for whatever blood tests the nhs carry out for rc mc. So I will note this down and take it with me.

I had a good chat with my gp who has recommended not ttc for a few months. His logic is that I haven't had a period in 2 years or between my 3 last pregnacies so it would be good to get optimum uterine lining. I have conceived straightaway each time which is even more surprising when I was previously told I wasn't ovulating due to pcos.

I haven't heard of antimullerian test before, is it very specialised?

I'm going to wait for blood tests to come through and then get a private referral to rcmc specialist.

I hope everyone else is doing ok?
This is truely shit but I'm very glad I found you all, where would we be without mnsmile

Bakingtins Fri 12-Jul-13 13:58:41

The AMH was recommended by the consultant. I don't have any symptoms of PCOS but it's linked to male pattern balding and diabetes, both of which I have family history of. It's also useful to check ovarian reserve (as I am an old bag) which was 'satisfactory' in my case. That reassured me I'm not perimenopausal so have a little time to play with.
I was clear for PCOS but this is linked to RMC and some people have v few symptoms but still have the cysts.

Purplefrogshoe Fri 12-Jul-13 22:39:25

Thanks Baking i really dont think ive had any of these, i remember getting the hormone tests and had swaps done. this list will really help

Justonemoretime Sat 13-Jul-13 07:41:00

You know that feeling when you know a big emotional blow-out is threatening but doesn't quite come? It's my last week in my job this week, which is emotional enough, never mind all the hormones that are probably swimming around as my cycle tries to settle down. Might start a book on when (rather than if) I cry in public this week...
DH is full of hope - we have an appointment! This is good news! I'm erring more on the side of pessimism in a world seemingly full of babies and pregnant women (dreading arrival of royal baby). Feel like such a grinch!
Hope everyone else is finding peace, somehow. xx

Ladybee Sat 13-Jul-13 08:50:29

It was a bit odd reading the start of this thread and seeing LunaticFringe and Coconuts pop up. I was on this thread with them, a few years back. Since then I have had successful pregnancy and another miscarriage. I'm coming back on as I'm one week out from an ERPC, well, it was on Monday, and for the first time we're getting the tissue tested. And like a couple of you, I'm also faced with the prospect of making some decisions about whether to carry on.
I feel very very sad for those on this journey, getting to three is so hard. My history is a bit strange. I was diagnosed with PCOS before starting to TTC. Miscarried my first pg at about 5 weeks. Then got pg again and took metformin through the first trimester and had DS (now 5).
When he was about 18 months we decided to try for no.2.
1st pg had private scan at 8 weeks, no embryo seen. ERPC.
2nd pg had scan at 7 weeks hb seen, started bleeding at 8, natural mc.
I was 'lucky' to have been treated by the same nurse both times at the EPAU and she referred me for testing then.
Tests showed I had a clotting factor, Leiden Factor V, but nothing else (apart from existing PCOS). Consultant recommended aspirin, I fought for heparin, but he wouldn't give progesterone.
3rd pg on aspirin, heparin, metformin. Scans at 5,7,9 weeks all fine, scan at 11.5 weeks - no hb, apparently hb stopped around 9.3. Consultant said, throw everything at it - progesterone next time.
Left UK, decided that one child was fine, gave up. Got pg.
Progesterone, heparin, metformin, aspirin. Weekly scans, DD born last year (now 14 months)
Decided to try for 3rd. Got pg. No metformin as cycles just returned while BFing.
Got pg. Progesterone, heparin, aspirin. Weekly scans. All fine until scan at 9.5 weeks shows hb stopped.

So. Here I am again. Wondering whether it was metformin. Or age (I'm 39), or something else. And wishing most of all that I could have been like my two best friends, who walked out of the hospital having had their DC2 saying 'thank god I never have to do that again'. It seems like the last in a long line of sick jokes from the universe that I walked out saying in my heart 'I want to be pregnant all over again'.

Justonemoretime Sat 13-Jul-13 10:12:36

Welcome, Ladybee, sorry you find yourself here. Hope your recovery is swift and uncomplicated.

teaandchocolate Sat 13-Jul-13 19:03:51

Hi everyone.

Hello to Ladybee. Sorry you're back here again. I think you'll find a lot of common ground with Baking and Picardy who are also deciding whether to keep trying for no3.

Purple - sorry you find yourself here. I hope you are recovering ok.

I just wanted to let you all know that I had my private 12 week scan and screening today and it was all fine!! Came back very low risk and all anatomy checks were good! Can't quite believe we've got here after such an awful 18 months! Should be due end of January!

I do wonder whether the hyper fertility issue could be blamed for my mc as this is the first time I didn't get pregnant on the first go. It took 5 months this time which felt like forever but hopefully meant a good one stuck.

Hello to everyone else. Hope you're doing ok. Baking I hope you get some clarity soon. Its such an impossible decision to know when to stop. I also hoped to have 3 children but if this works out I'm not sure I can put myself and my family through all this again.

donttrythisathome Sat 13-Jul-13 21:00:51

Ladybee, what a rollercoaster. What does the metformin do and why do you think it would have made a difference? Its so hard to mc after seeing the hb - after my last mc I had seen the hb, had the same preg symptoms ad I had with my one live child, and innocently presumed (largely) everything would be ok. Is numbing when it turns out you were wrong.

Tea - yahoooo!!!! Sounds very very positive, Thrilled for you. Do you feel more relaxed now or is it impossible to be relaxed after rcmcs? Mind you its hard to be relaxed really even if you haven't had mcs until the baby has been born.

justonemore time - it really seems there are babies and pregnant people everywhere. probably because there actually is and always will be! I found myself staring at a pregnant woman down the beach today, couldn't stop looking and wondering what my 15 week bump would have been like (answer: bloated).

I went for a scan on Friday and have no retained product left, but now have a cyst on my ovary! They said it wasn't a problem though and they will scan me again in 3 months to see if it is gone. Now just waiting impatiently to ovulate as i am so keen to get pregnant again. Amazingly I am optimistic for the next time, but perhaps I should tone it all down as it will make it very hard to cope if I am not more realistic about my chances. Me and my DH both 40, 3 mcs in a row - I can't make out the stats, but I know they ain't good.

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