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

[squizita]

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

Morning all on the start of such a sunshiney weekend! (note: I'm trying to be really positive!)

Baking I'm really sorry the results didn't show anything at all. I concur with the others that if you can scrape together some pennies to try and get the immunology tests done at least (Siobhan Quenby in Coventry does it for about £230 I believe) as the emotional trauma of it all must be putting you and your other half through the ringer. Huge hugs on whatever you decide.

God Justintime that must of been really awkward for you both, awful.

I had a scan to make sure that I'd mc everything which it, and bloods, showed I had although it had them head scratching as I haven't bleed much and my lining was still quite thick - another curve ball my bloomin' body does it seems. Thank god I'd already come to grips with this 3rd mc or sitting in the waiting room surrounded by pg women of various stages would have been hideous - who on earth designs these things and I can't understand how the nurses etc haven't said/done something about it, its just awful.

The repro immunology seems very open ended. I'm going to ask more about it on the TTC on prednisolone thread, but the impression from reading Dr Beer's book is there are a lot of conditions under that general heading.
Dr Quenby charges £360 to be seen and have a biopsy for NK cells, but it's also a day off work and travel to Coventry. It doesn't seem like I'd get any support from the local drs for steroid treatment, much less IVG or intralipid.

Oh, baking you've obviously done your homework on it all and I understand what you mean - its the ongoing costs etc not only the first appointment.

When I was sat in the hospital yesterday waiting for my scan I was morbidly fascinated by the shapes and sizes and ages of the pg women - I really had to sit on the horrible me of the 'well if they can get/stay pg why the hell can't I', not constructive or helpful and I don't begrudge anyone else happiness but it certainly makes me wonder when I've had 18mnths of very very little alcohol, 1 cup of tea a day, acupuncuture and reflexology coming out of my ears and my body is STILL playing silly buggers - agggggh!

Polka that nasty little jealous voice is hard to keep down, isn't it. My sister is 7 months and it's pretty tough being around her, even though I love her :( I really can't understand why so many hospitals still have the same waiting room for everyone at all stages. Cruel.

Just heard that I have got an appointment at St Mary's :) for October :( (seems ages, but only 3 months away). We're also on the list for any cancellations, so fingers crossed. Just want to get the bloods drawn as the wait for results is another month on top of that. Advised not to ttc until then. I know I need to wait at least 1 cycle anyway, but so annoying. You just know when you are trying it takes ages but when you're not it just happens. Still, I start my new job in September which I am looking forward to so I need to hang on long enough to get maternity pay etc. which I would have missed out on bug time if the last pg had worked out!

Have a good weekend, all! x

Oops meant big time :)

Got BFN, so ERPC seems to have worked. On the road to normality... :)

Hi all. Glad to hear the ERPC worked Justonemoretime.

I'm getting stressed still no AF. Wouldn't be worried with a normal MC but the word on the forums with molar is it comes back v soon after you're under 100 hcg. (Though I wonder if some people have molar bleeds and get confused... A cycle only starts under 100 hcg surely? So you'd need at least 21 days from that point?).

Hey Squiz. I know it's not exactly the same but after my last erpc I didn't get my period back.. Was referred to a consultant about that cos I was so worried.. I started after about 3 months getting literally smallest spotting every 4 weeks ish.. And anyway, 6 months post erpc I got pregnant (with this baby in belly currently kicking me and nearly 34 weeks!) so was obviously ovulating.. They kept telling me I probably was but I didn't really believe them!

Wish our bodies could be programmed like a computer hey? X

Justone glad to hear you are back on track with a BFN and an appointment date.
Polka I'm sorry you had to sit with all the bumps. It doesn't take much imagination to think what that does to someone who has just miscarried.

DH and I had a big talk and cry together yesterday. I think we're both absolutely agreed that we are not trying again on the basis suggested by the RMC clinic, i.e. that we just do the cyclogest/aspirin/folic acid again. It's clear to me that there is some undiagnosed problem since there is nothing wrong with the babies. DH has had enough and is ready to stop, though I don't think he will insist if I really want to pursue the NK cells thing. I'm not sure I want to. Even if I get a diagnosis and treatment it only gets us back to square 1 of TTC again. I need to find out what the success rate is with treatment, since presumably there are still no guarantees.
We've had a lovely weekend in the sunshine, been out spotting 'Gromits' in Bristol with the boys and watched AM win Wimbledon, and I still feel crap

Baking I'm so sorry to hear that you are going through such an awful time. I really do feel for you and your DH; I hope you both find some peace.

hi, I was wondering if I could join your thread.
I have just had my third mc. I have an appointment in a few weeks time to begin tests of dh and myself. I'm just wondering what to expect? I'm still in hospital and the doctor mentioned possible genetic reasons and that with age the chances of this increase (I'm 32).
so confused by all this, I'm very very lucky to have a 2yr old at home who was a very straightforward pregnancy.

Hi nearly,
So sorry to hear about your losses, welcome to the thread. The tests they will do are for a range of issues. These are to do with blood clotting and other issues. They will take about 10 test-tubes worth, so don't be alarmed. I found this book very helpful in understanding what they test for:
www.amazon.co.uk/Miscarriage-What-every-Woman-needs/dp/0752837575/ref=sr_1_1?s=books&ie=UTF8&qid=1373304263&sr=1-1&keywords=lesley+regan

My DH and I both had our kayotypes done (genetic tests) because there was a possibility that there was a translocation lurking (we were both clear). This was a blood test, not invasive, but it takes about 6 weeks to get the results. Frustrating but it can't be done any faster, apparently.

Have you been referred to a RCM clinic? It seems to take about 3 months to get an appointment, so, if you are feeling up to it, ask your GP to start that process now so that you can get the best care you can when and if you feel ready to try again.

In the mean time, I hope that your recovery is swift and uncomplicated, and that you have lots of people to look after you.

Best wishes, xx

hi just, thank you for the info.
I think its time to educate myself on all matters mc so I will start with the book.
can I ask what a rcm centre is?

No problem. RMC is Recurrent Miscarriage Clinic. My mistake! Sorry for any extra confusion!

ah sorry, really should have worked that ok im blaming the morphine

School thanks! :) The hospital said similar- takes 1-3 months, can be all over, but don't worry! Phew.

nearlyreadytopop Sorry you find yourself here. And sorry your doc has worried you about age. The genetic/conception "milestone" (exaggerated by non-gynie docs in areas where 30-something-mums are rare, the media etc') is thirty five - with the impact only becoming significant at 39-40. I have had 3 MCs and just turned 35. The specialists at the EPU were at pains to stress that it was highly unlikely my problems were age related. I am quite militant about this as it seems to be a hurtful and hope-destroying throwaway thing so many docs just say whatever age (have heard it said to women in their late 20s before!!!). As Justonemoretime states they test for lots of reasons - blood clotting issues, karotyping etc'.

Hi Nearly. I'm sorry you are going through this again. Life is very unfair. I agree with the others that your age is not very likely to be a big factor and that it's not a helpful thing for the doctor to say.
If you have the opportunity, ask them to test "products" this time (sorry - horrible word). This is the only way you are going to find out if it is chromosome issues that are causing your miscarriages. They will probably do a karyotype (genetic testing on a blood sample) of you and your DH to make sure neither of you carry any defective chromosomes, but most chromosome problems in the baby arise as the egg and sperm meet and are a chance happening rather than coming from you. A normal parental karyotype does not rule out a chromosome cause for the miscarriages, though makes it less likely it will recur.
I'm feeling bitter about the way chromosomes are blamed for everything at the moment. I've had 4 miscarriages and it took until the 4th one for them to do cytogenetics on the baby, and then only because I insisted and peed through a sieve for days . MC4 was normal, and since it was the same as the others, probably 1, 2 and 3 were also normal. They have not come up with any answers for me on the NHS tests, and it's worth being aware from the outset that they don't find anything in 50% of cases.
There's a suggestion in a book I read that they should test the products in a first MC then the people who MC due to some random chromosome thing are reassured it will likely be ok next time, and the people who actually have a problem that caused them to lose a normal baby can be identified and tested early, before they've gone through the misery of multiple losses. It will never happen here as it would financially cripple the NHS, but you can see the logic.
Anyway - expect to be asked lots of questions and then required to donate a lot of blood. I had a scan mid-cycle to check for PCOS and that my uterine lining was ok, and bloods at various points - some day 2 of cycle for hormone levels, some needed to be 6 weeks post miscarriage for the clotting issues etc. DH gets away with one tube for karyotyping.

Ladies, walk with me through this 70% thing, because I just don't get it.

Am I right in saying in cases where a woman has had 3 MC in a row and no cause is found (50% of the RMC population) there is a 70% chance of success with the next pregnancy?
Chances of a random chromosome problem in a pregnancy seems to be about 15%, which gives you the background miscarriage rate. That means chances of 3 chromosome problems in a row is 0.34%. Actual RMC rate is about 1%, so a third of the RMC population are truly just unlucky. Half of the RMCers will have another cause found.
34 unlucky women/50 nothing wrong RMCers = 68%.
I think I just found my answer. The ones where it all goes ok next time were probably the ones who had genuinely been repeatedly unlucky in previous pregnancies and with a good embryo can carry to term.

Does that make sense? That suggests to me since I am in the 16% with no cause and no chromosome problems I will always be in the 30% who miscarry again unless some other cause is identified and treated.

I'm RUBBISH at maths baking but kinda see your logic..... I think;-)

Baking I am not sure it's that simple due to the fact as you say it's impossible to test every losee - I've read (in Regan's book and 'Coming To Term') that after 4 or 5, chance of success if no cause found falls to about 55%: covering all women who have had 4 or 5 but are undiagnosed. It was suggested in the books that this often means undiagnosed conditions which make MC more likely but don't mean a MC every time- hence the lower success rate.

And chromasomal isn't always the same - my partial molar triplody is a definite one-off type thing. So if I had 2 sporadic MCs down to chromasomes and this, it could muddy the statistical waters - and I guess this also happens?

Also some sporadics are not chromasomal (just as with RMC it is used when they just don't know) which fogs it up further. I wonder how many women who have had 1 or 2 MCs have conditions and either wanted a small family and/or were just very lucky that in that 50/50 gamble they didn't lose 3 times in a row?

Hi everyone.

Baking I am very impressed with your reasoning and mathmatical ability!! I agree with Squiz that its not always simple. Some women with conditions that cause rmc won't necessarily suffer a mc with each pregnancy. Even the worst ones have a 80-90% mc rate which means that some women will be the lucky 10%. Although from what I've read (in Lesley Regan's book) there are often other symptoms which indicate clotting disorders (like bleeding, low birth rate, prem birth, pre-eclampsia etc). Some conditions aren't easy to diagnose. Do you know if your bloods were tested within 2 hours as per Regan's advice?

I read recently (on here or another forum) about someone who had multiple mc and had a condition diagnosed but because she didn't realise she was pregnant didn't take the medication, and still managed to have a healthy pregnancy. I'm not sure exactly how NK cells work and whether they can fluctuate or whether they always mean mc. Have you read 'Is your body baby friendly' by Alan Beer? Its on my list of what to do if this pregnancy fails.

Nearly so sorry for what you're going through. Hope you're feeling ok today. Everyone has given really good advice so I don't have much to add other than I agree push to get your (& DH) bloods taken for karyotyping asap as it doesn't matter whether you have pregnancy hormones in your body and the results take ages to come back.

Sorry once again for not being on here much recently. I feel a bit like I'm in limbo-land. Not properly pregant yet but not in the rmc zone (as I am trying to think positively). Have a private 12 week scan on Saturday so should know then whether this pregnancy is viable. Terrified already but not long to go.....

Hope everyone else is doing ok.

Yes, I read Alan Beer's book. If anything it made it worse because my impression before reading it was there is only NK cells to worry about if there is nothing on the standard tests, but in fact it's way more complicated than that. I've been chatting to some of the ladies on the "TTC on prednisolone" thread and it seems though a proportion do ok just on steroids, the others have to have intralipid/IVG which are even more controversial and many of them are several years into treatment with no baby. Their experiences vary from "I saw one person, spent £350 and had a baby" to " I've spend thousands, trailed back and forth to London for 2 yrs and no further forward" No guarantees, as with all of this.
I'm sure my maths is a bit simplistic (never did very well on my stats courses at uni!) but I'm so sick of the 70% figure being bandied around and nobody knows or seems bothered about finding out WHY some women are ok after multiple miscarriages, or why 30% are just going to miscarry again and again.
I doubt that my bloods were tested in 2 hours as the GP took them, but I was on aspirin anyway and it made no difference. They're not offering me heparin without a diagnosed clotting problem.
I'm sorry for ranting, I'm just really fed up with the whole thing and feel that the medics have nothing to offer but platitudes. I think we've reached the end of our particular road with TTC, but that makes me deeply unhappy and uncertain what the future holds for us. My "big family" has been part of my life-plan for so many years. I'm very grateful for my boys, particularly DS2 since he came along after the miscarriages started and looking back it seems he survived very much against the odds, but there is a big gap in my family, and too many memorial trees in the garden.

Tea best of luck for your scan. I hope after that you'll be able to relax a little.

Is it 70% per pregnancy or 70% ever? Because come to think of it I have heard it used both ways.

Lesley Regan seems to say its per pregnancy.

Which would explain the poor women who go through 5+ then suddenly succeed.

....in other news, AF may be in the building! On the one hand, so glad to be 'working' again. On the other, wiping and seeing it 1st time after a loss (even an ERPC one) makes me a bit queaze.

Been reading that thread where all those mums have been comforting the OP with their stories of 1st DC after RMC. One to bookmark for sad days for me!

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.