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Miscarriage/pregnancy loss

Thrombophilia testing

20 replies

butterfly86 · 16/10/2012 13:55

I'm going this afternoon to have bloods done to check if i've got a clotting disorder,dreading it a bit really as have to go to antenatal/gynae unit which is where we had to go for scans and found out i'd had missed miscarriages so holds a lot of bad memories for me.

Wondering what the chances are it is this and how long will i wait for results etc?
Thanks x

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lotsofcheese · 16/10/2012 14:22

Hi butterfly I had a thrombophilia screen about 2 years ago. It was just a quick blood test, but the results took a few weeks as it's not a common test & hospitals have to wait for enough samples to run a batch together (or mine did).

My results were slightly abnormal. But only just so. This meant I had to have another repeat test 2-3 months from the 1st, to confirm/exclude the diagnosis. And no ttc during that time. Luckily my 2nd sample was clear so I didn't have clotting issues.

It's apparently a rare thing to have a clotting abnormality, but I was told they mainly check to exclude it for recurrent m/c, as it is a very treatable condition.

Good luck!

butterfly86 · 16/10/2012 21:08

Thanks so much for replying! Had the bloods done they took 9 bottles felt a bit woozy afterwards! Wasn't very nice sitting in the waiting area apart from the memories it was full of pregnant woment then me :-( the nurse made me feel a bit bad because we paid for a private consultation then got transferred back to nhs for tests she said i know you paid privately but we don't usually do this after 2 miscarriages i felt a bit uncomfortable really. She said i will wait about 6 weeks for results so just a waiting game now she did say it was rare though so fingers crossed! x

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lotsofcheese · 16/10/2012 21:41

Glad you got the bloods done ok, but am a wee bit Angry at the nurse's attitude. She has clearly not had a m/c!

I had the test done after 1 episode of severe, early PE (hadn't had m/c at that point) & this goes against the NICE guidelines, but my NHS consultant agreed to do it.

Hopefully the results will come back clear for you

teaandchocolate · 17/10/2012 19:09

I've also just had the tests done after 'only' 2 recurrent mc (but 3 in total) and am also shocked the nurse said that to you. It's nothing to do with her and it's not as if she's paying!!

I'm waiting 6 weeks for the results and hoping they're negative. Although I'm worrying that they've done the tests wrong as Lesley Regans book said that is a common problem. Think I research too much though!! Fingers crossed for us both!!

charleybarley · 17/10/2012 19:19

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butterfly86 · 17/10/2012 21:14

Thanks to you all for your replies!

Tea-I'm reading lesley regans book too and am under the impression it's quite common but I'm also an internet queen and have prob done too much research can't help myself! In a way I think well at least if I have got a problem at least I'll have a reason for all this i'ts madness. You will have to let me know how you get on, good luck x

Charley- It's great to hear positive stories thank you! I'm not sure if there is anything in the family but my grandmother has rheumatoid arthritis which I'm sure I've read somewhere can be connected as it's a blood disorder, also there is a massive history of misscarriage on my maternal side don't know if it's just coincidence but does make you think. I think i was so taken aback by what the nurse said I didn't say anything when she asked how many i'd had I almost said oh just 2 its crazy they shouldnt make people feel like that! As if this whole thing isnt bad enough x

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charleybarley · 17/10/2012 21:29

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teaandchocolate · 17/10/2012 22:21

Thanks butterfly. Let me know how you get on. Although its awful that so many of us are going through this it's also really reassuring that we are not alone. There's a recurrent miscarriage testing thread where there's a few of us having tests at the moment.

I think arthritis can be linked to auto-immune problems which I think includes Hughes syndrome which is a type of clotting disorder. After reading the Reagan book (& the entire Internet!!) I'm worried that they took my blood with a cuff on and not sure they tested it within 10 mins which is what prof Regan says you need to do. I drive myself mad!!

butterfly86 · 17/10/2012 23:27

It is reassuring because I feel very alone in all of this no one really understands i'll have a look on the other thread.

Funnily enough after the last posts i read a few pages in the book on this and im now worried because i had a cuff on she did take it off halfway through I also doubt it was tested within 10 min as she mentioned the bloods had to go to scotland!! Totally drive myself mad too can't help it though not sure its any good for me doing all this research! x

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farfallarocks · 18/10/2012 08:21

butterfly you poor thing and what an awful nurse, none of her business and not really professional at all, do consider making a complaint.

Is there any way you can have the tests done at St Mary's Paddington in London? Privately these cost about £200 and this si the clinic where Reagan and othgers (like Raj Rai) work. They do a test that no one else does where they centrifuge the blood to mimic the conditions in your veins. They identified my problem when all the usual NHS tests came back as normal.
I had something called impaired fibrogenic response which means my body does not break down clots as efficiently as it ought to. I took heparin/cleaxne for the first 25 weeks of this pregnancy and am now 38 weeks. I did all this after 'only' 2 miscarriages.

best of luck!

teaandchocolate · 18/10/2012 08:25

I know what you mean! I've read so much on the subject and to be honest it's just made me more confused and made me realise that even the experts don't agree on what causes mc. It also means I don't really have anyone to talk to as nobody understands all this medical stuff!! Even my friend who's a gynae doctor said she doesn't really know enough about mc to give me a proper view. I got the feeling she thought you might as well keep trying as even without treatment most people will go on to have a baby. It is exhausting! I wake up most days with a headache from worrying! Anyway sorry to hijack your thread. Please do join us on the rmc testing thread!

butterfly86 · 18/10/2012 14:02

Farfallarocks- Im in the northeast so London is a bit far but if at some point i thought it was necessary there's no doubt i would go. I went private for the consultation and the cons transferred me back to nhs to save paying but I was expecting to pay no matter what it cost just nerd some answers!

Teaandchocolate-It absolutely is exhausting it's all i think about gtom the minute I wake up til the minute i go to bed! I just keep thinking what if I never have a baby :-( You haven't hijacked my thread it's great to talk to people who understand what im on about! I'll pop over to the other thread! x

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charleybarley · 18/10/2012 15:09

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CaptainHoratioWragge · 18/10/2012 15:23

Butterfly, i'm so shocked the nurse was so rude to is bad enough having to be back in the antenatal department without such insensitivity from someone who should know better.

I have Hughes (Antiphospolipid Syndrome), and have had 3 MC. My next PG will involve Heparin, Aspirin and assorted other bits and pieces.

I would very much echo what Far says about st Mary's- in my experience, the difference in understanding and capability between some regional hospitals (like the one I was at for my first loss) and the big london teaching hopstials is frighteningly large.

My first baby died at 20 weeks, and the PM indicated it had died from ischemia, so most likely to be a clotting disorder, but the hosptial lost the placenta so it couldn't be confirmed. They did clotting tests and they all came back clear, was told it was one of those things.

I then lost my second baby, after which i demanded to be referred to st thomas's in london (they have a big clotting disorder interest there as they discovered Hughes syndrom, which i supsected from google I had!)

They redid the tests that the other hosptial did, but with the right protocols, no cuff, quickly testing etc- and DO have hughes sydrome after all. They immediately presecribed me clexane but i was 8 weeks PG with my third baby. At 11 weeks they found that the baby died between 7+5 (when it had been fine on a scan) and 8 weeks, so the clexane was started too late to save the baby.

It makes me so cross to think that my last 2 MC could have been avoided if my original hosptial knew what they were doing.

If you have any doubts about where you are being treated or the test come back as inconclusive, please, please get a second opinion. As Far says, st marys rmc are amazing, as are st thomas' for blood clotting issues.

(If you wanted to come down to london for testing, i have a slightly uncomfortable double sofa bed in the living room you would be very welcome to use at any time)

charleybarley · 18/10/2012 15:55

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CaptainHoratioWragge · 18/10/2012 16:14

Charleybarley, have also heard that about barts.
Congratulations on your sucessful PG, I hold onto such things Smile

farfallarocks · 18/10/2012 16:24

I also started the clexane at 3 weeks, I tested early and hot footed it down to st marys that morning to be shown how to inject.
My problem started at implantation so I had to start early.

Sadly as others have confirmed, it is a very specialist subject and treatment varies widely. The other thing to be aware of is that some people only develop problmes during pregnancy so tests come back normal when tested in a non pregnant state. I had all the tests repeated the minute I found out I was pregnant as well.

butterfly86 · 18/10/2012 16:26

Captain, Sorry for your losses I cant begin to image losing a baby later they early ones are horrific enough. I'm glad you got some answers eventually but so sad you had to have more losses in the meantime. There is so much I didn't know before ttc or even after my first mc to be honest Id never even heard of a mmc! It's such a shame that the innocence of it all is gone and we will never be able to enjoy the experience. I'll see what happens withthese tests and go from there i'll go wherever I have to, thank you so much for the offer of the sofa bed it is so kind of you :-) so pleased I joined mn you are all so lovely! Wish I didn't have to wait so long for results feel like all of this has gone on forever to think this time last year we had just decided to ttc little did I know what we were in for...

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charleybarley · 18/10/2012 17:38

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butterfly86 · 12/12/2012 21:06

Just a quick update my results came today all clear so i still don't have a reason for anything but I suppose its a good thing not be considered high risk for next pg, fingers crossed everything goes smoothly next time x

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