Recurrent Miscarriage Support Thread 19 - tests, treatment, trying again.

[bythesea82]

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

Welcome Queen, and LeahJane, and sorry you both ended up here. And Bunny, keeping everything crossed for you.
Going back to the boy thing, thanks for posting that presentation (March?) - so interesting. The research I read said that with secondary infertility due to recurrent miscarriage, a large majority of women have had boys before the miscarriages and have girls afterwards. So the hypothesis was that having a boy may stop you from carrying one to term in the future. However I find it hard to believe that all four of my miscarriages were boys, although I know the last was.
I think Prof Quenby has been involved with some kind of research into this.
I'm now convinced my m/cs are due to immune system. Read the other day (consultants must love Google!) that one autoimmune response causes small placenta - might have been thyroid antibodies. And midwife did remark at size of DS2's small placenta when he was born.
But thank goodness we have got Google/internet and the extra knowledge/power it has given us in this situation.

Leahjane, so so sorry, what a horrific time, dont know how you have foynd the strength, sending you warm welcomes xxxx night night everyone.

Thanks again for the welcome everyone. pop thanks for the info on the bloods. I went to my GP today and cried whilst asking for clotting tests. She sent me straight to the drop in blood clinic at the hospital to have bloods taken. I hadn't realised that the hospital may already have taken these immediately after the loss. Big now I wonder if either set of tests will pick up the clotting disorders that I'm worried about. Maybe I'll have to go to St Mary's for those. The GP seemed to think that any clotting disorder would show up under a generic umbrella test that she'd ordered, and this could be investigated further with more specific tests if needed. Let's see...

leahjane so very sorry for your loss. . It's such a sad time. X

Welcome Leah. I too was a blog Virgin until I came across this thread, however I stayed as I found the lovely ladies provide balanced views and empathy. So I hope you find the support you need....

Hi guys...sorry been absent I've had to work loads over last week or so and been stressed and trying to get tests. Unfortunately we don't have s RMC in South Wales I have been told the referrals get split between general gynaes. I'm now told appointment will be August (they won't expidite it as I don't have cancer) and nurse in epu told me to expect they will tell me I have to miscarry again before they will do tests....which would be a fourth time. I feel so unsupported and stressed and trying to find some help. I am truly skint from everything else we are doing already and buying our first home soon...supposed to be getting married next year (cancelled last one due to finances lol) but it looks like I will have to pay privately for help so have booked an initial private consult to at least speak to someone about it. What else can I do? Have had some clotting tests by GP...can I ask them to do anything else for me?

Thanks
X

freckle, you made me properly LOL with your blah blah blah. Exactly.

Queen, really glad your gp is willing to help. I think the ones they normally take just after mc probably wouldn't have been clotting so don't think you'll have duplicated.

The clotting tests the rmc will do are quite specific, they include thrombophilia, lupus anticoagulent (i think there are subtypes of both of these) and antinuclear antibodies. They took about 8 vials of blood for me I think. How many did they take? She might have covered some of them but perhaps when you see the rmc consultant they will fill in the gaps if there are any.

I also think you may need to be several weeks post mc to get an accurate result, as your blood changes during pregnancy. Someone mentioned 6 weeks i think. Not sure about that though.
These ones will cover the main clotting disorders. St marys test the elasticity of the blood as it coagulates, but this definitely isn't a standard one. I think there are a few people that have had it.

I really wish they would give us more information. I've never had a leaflet about what they were going to test for or a proper explanation. They treat us like we couldn't possibly understand.

Leah - sorry to hear your news and big hugs.

Sebs - I am behind on some of the posts on here. Are you worried about your sons speech? I might be able to help you out with some recommendations if you are. Xx

march thanks for the info. She took about 8-10 viles from me. The lupus and APS were definitely requested, but I'm worried it's too soon after my loss. Agree that more info from the hospital would be useful.

littlebear it seems unfair to make you wait 6 months. Can you use the NHS 'Choose and book' and maybe go outside South Wales? I used it for one of our fertilty appointment and managed to bypass the long wait at our local hospital.

I was going to suggest the same little, 6 months is ridiculous

Oh god littlebear that sounds do stressful. Why the hell do you have to have 4 MCs for anyone to run tests? It's three surely? I imagine if you kicked up a fuss they might start to listen more but also recognise that post MC the last thing you want to do is fight.

Re. My son, yup, he has speech delay (he babbles like a baby but says only about two words at 28 months). I'm not hugely worried if I'm honest, because his cousins were the same and suddenly started talking around 2.5, but all the professionals are wringing their hands so I am acquiescing like a good girl and taking myself off to various places. I did like the parenting course recommendation though The only thing I can actually do is be a bloody good parent IMO but obviously not in there's

Thanks everyone...I will make an appointment for a phone call with GP...even that's hard to get lol and ask for a different consultant. Shall I just ask for Coventry as although is ages away my mother lives an hour away so it's not too bad? How do I quote this to the GP is there a phrase I need to use or anything?

The referral dates back to November btw so it's 10 months...it's bloody ridiculous :( but no one I complain to gives a shit.

Sebsmummy...late speech development is my specialism so if you did want any extra info or more of a chat...happy for you to PM me

Xx

Thank you all for your warm welcomes! It is so lovely and bizarre that complete strangers have already been more supportive and understanding than some friends and family! My GP was fantastic after my 2nd mc he booked me in for a load of tests which I think were the standard ones you mentioned Marchgirl but no uterine scan. After the 3rd mc I then got referred to the hospital which even that was an excruciating wait but only 3 months. I feel your pain littlebear 6 months is ridiculous, but the way I saw it I was giving my body and mind the well needed time to chill out and repair before we could try again. You are all such clever people, I spent hours researching on the Internet and know nothing compared to you lot! I am going to see what pregnancy 5 brings and if it's a bad one go at my GP all guns blazing! The question is do we ttc before the holiday in May (10hr return flight) or wait until we get back? It all feels such a long way away!

sebs I work with littlies and behaviour and don't worry, parenting courses get offered pretty freely!

littlebear It's awful that you have to have 4 before they will test, and awful to wait til August! You can self-refer t Coventry (or your GP can refer) but it costs £360 either way. They don't do the "usual" blood tests there, but do a uterine biopsy for uterine natural killer cells. However, the treatment protocol they prescribe, regardless of levels of uNK cells, can be helpful for other conditions too. I am saying all this as though I'm an expert and I haven't been yet! We will be going this month after all the NHS tests came back normal for us.

And hello and welcome leahjane, so very sorry to hear about what you have been through. This thread is ace.

Sorry littlebear 10 months is just ridiculous!!! Defo try and get that changed, I had no idea you could even request different hospitals!

Littlebear, you don't even need to ask your GP about Coventry, just phone them directly. You can get Kerri's number from Google.
Re blood tests after mc, 2 days after my 2nd mc, my GP ordered about 8-10 vials of blood tests including clotting issues (I know one if them was the viper venom test- rather alarmingly named and probably normally known as something more medical!). St Mary's did them all again, incl teg, after mc3, but they waited 4 months post mc to do them and then again 6 weeks later. The results were the same all 3 times. Conclusion? Pg hormones might make a difference to some tests for some women, but might not affect all of them for all women. It doesn't seem to have made a difference either way for me.

Welcome newbies, so sorry to read your sad stories. Hope we can give you the information and support you need to make the best decisions to help you plan your next steps.

Hello. I've dipped in and out of this thread over the months and have always been grateful for your wealth of knowledge and support.
I'm having a very difficult time at the moment and hoping you can help with some combined experience.
I'm 35, no children yet, and had 3 MCs between Nov 2013 and Nov 2014. My third MC was tested and the initial results in a letter in December showed no chromosomal abnormalities found. This was a relief and I decided to carry on trying and as I'd seen a fertility specialist who reassured me it's just bad luck blah blah, I decided to keep on trying and I am currently 6+2 weeks pregnant.
I decided to keep my appointment at the recurrent miscarriage clinic (it's been a 4 month wait) as best to have as much info as possible.
But I was knocked sudeways with the news at it yesterday that in fact they had found a rare genetic issue with the third baby and that my husband I need to have full genetic karyotying and councilling.
The Dr said that they found chromosome 16 had a balanced translocation. And she was very unwilling to give more info about the viability of my current pregnancy.
I'm not from a medical background and I was by myself so only my set of ears heard all this.
I'm very confused and very upset.
I would have not got pregnant again if I had had this information and now I'm terrified I'm destined to miscarry again or have to opt for a TFMR.
The i depth genetic screening results take 6 weeks. So I'll be at 12 weeks by then, if I don't lose this baby before.
My question is has anyone else experienced this?
I've done a few internet searches but I can't find much about this. And no one in RL has this expetience and sadly I'm not close friends with a geneticist!
It just feels hopeless.

Hi size just a quick answer on your question. As I understand it, even if they find something like that, it's unlikely to affect every pregnancy. From what I have heard, even if you have genetic counselling where they will explain risks, likelihood of future pregnancies being affected, you have 2 choices. Try again and hope a future pregnancy is clear. Have future eggs screened and implanted once they are shown to be clear. This is very much a lay persons view but roughly what I understood when I asked the consultant. In short, I would take heart that your current pregnancy could be fine. I know there is a section about this in Prof Regan's book on miscarriage. When back home I will check and try and PM you some scanned info.

Hello Sizethree, Sorry you've had such shocking news, but remember, whichever one of you or your partner is supplying the balanced translocation is alive and well and you would not otherwise know about it. That means that it is possible that that may also be the case for your baby. It may mean that that baby may grow up to have some similar fertility issues to yourselves, but I should think that the technology will be better to manage such things by then, and they'll know they have it from the outset, so no need to 'keep trying' before proper treatment and diagnosis.
With translocations, it can go several ways; a) it's not passed on at all and the the baby is chromosomally normal; b) it's passed on in its balanced form and the baby will be like you or your DH (normal except possible future fertility issues) or c) you will miscarry because the translocation is passed on in an 'unbalanced' form, or you may, very sadly, need to consider a TFMR. I hope that it does not come to that. I have attached a document which I found online. I hope that it is helpful and not scary/depressing for you. All the best. www.rarechromo.org/information/Other/Balanced%20translocations%20FTNP.pdf

An addition to c) above; you may feel, with advice, that the disability resulting from the unbalanced translocation is 'livable' and the baby could go on to have a fulfilling life albeit with a disability; you may feel that it would not be necessary to terminate. Thought I ought to add that for balance.

Thanks all for advice :) I am going to Coventry for NK cells which will be about 2 months time I think as only miscarried mid February this time. In terms of the other blood tests you have all had I presume most of them are under a miscarriage specialist? Can I ask for an nhs referral to Coventry for these...or another hospital?

Sorry size three to hear the worry you are under. Hopefully someone else on here may be able to help ...as I have had lots of support from here it's a great thread xx

littlebear which hospital are you under? I had my third mc in nov and got my appt in feb with a general gynae - I'm at royal gwent in newport I don't understand why it would be that long for you? I also saw someone privately who works at the royal glam for his nhs work and he said three months was standard for nhs as well I think?

Thanks by and just. I Just got into panic mode do thank you for giving me some information.
I have Prof Regan's book so will look up that section, thanks by so no kind of you to off to scan it for me.
Thanks for yiur add on just, I agree, I would not want to terminate a pregnancy that is compatible with life. I have worked with children and adults with varying disabilities and very much feel that life is precious and valuable regardless of disability I will unconditionally love my own child.

Sorry sizethree I don't know much but I think the others have given a good outline x