blood clotting defect and pregnancy - can anyone help?

[MrsMcJnr]

Ladies, thank you for reading

I have been diagnosed today with thromobophilia. I have a G20210A prothrombin mutation. I do not know yet if I have a factor V Leiden defect too.

I lost my baby 6 weeks ago at 10 weeks. It will have been my first. I read that a large percentage of miscarriages and low weight babies result from mothers having blood clotting issues and I remembered that my maternal Aunt had one and I contacted her for the details. Turns out, we all should have been tested when she was diagnosed .

I then discussed it with my GP who felt I should be tested given my medical history and the miscarriage. The results came back today (after 5 weeks of waiting). My GP confirmed that I do have a problem with blood clotting. I have high levels of the defect in my blood and am at high risk of thrombosis, deep vein thrombosis and stroke. I should never have taken the pill as it has placed me at greater risk. I was on the pill for 18 years until last June !

I am being referred to a consultant hematologist and the referral is generally to discuss this but also with specific reference to the management of future pregnancies which will be considered risk cases. The referral may take some months to come through. This was all the GP could tell me.

In the meantime, I am wondering if anyone can give me any info at all on this. Specifically with regard to TTC, how can I ?manage? the condition and is there anyway to reduce the effects? I read somewhere about taking baby aspirin but don?t know any details.

Any advice/help/knowledge would be very gratefully received

sorry, i have no advice juist wanted to say how sorry i am read about the loss of your baby

good luck

np xx

A first step could be getting Lesley Regan's book on miscarriage as I think she may have discovered the link. She might talk about it a bit there

Thank you very much ladies. It was actually that book that flagged it up in my mind, I'll re-read the chapter but know it doesn't talk about quantities of aspirin or when it should be taken etc.

Thought this might be you! Sorry to hear your news, but pleased that they can pinpoint a reason and, hopefully, treat it. I know when I asked about taking aspirin when pg, someone said you should only do it on medical advice. Could you afford to go private for the referral? Or would it be covered by health insurance? (Guessing not...)

Hi MrsMcJnr

So glad you got the results back... sorry to hear that they came back positive.

I have been tested for all the blood clotting issues and into my third test. I have been told for pregnancy as soon as I become pregnant my consultant will put me on 75mg's of aspirin and then take regular bloods (I suppose to monitor my bloods). Nothing has come back on mine so far, but I have just had the factor V repeated again. I have been told that if any come back positive they can use blood thinners within pregnancy (ASAP to be taken once finding out your pregnant). These include things like daily injections of Heparin to help sustain the pregnancy. Apparently there are many clotting issues and they only test for the major ones/common ones, so my doctor has said if I do have one and it has not been picked up in the routine bloods aspirin should be sufficient. However I suspect as you have been diagnosed with a high risk condition you may require more than aspirin. Apparently the figures are very good for people that have had diagnosed of such a condition that receive the blood thinners and success rate increases by 75%.

Oh MrsMc - Sorry to hear the news about your test results. Good job you were forceful for the tests!

I hope someone has some info for you!! Big hugs.

Thanks MumpBump don?t think we can afford to go private I?ve been doing some internet scouring (which as always, was very scary!) and it seems that there is no management to be done before you are actually pregnant other than taking folic acid (seems to help somehow) so I guess until that point, we have time to wait and I?d like to hope that if I do fall before the appointment, they can get me some emergency advice. Most articles seem to say that aspirin, heparin etc are given after 8 weeks so I still have time to get this properly investigated. It was a bit of a shock, I really did think I was just ticking a box and that it would come back negative .

RahRah ? I knew that you would know lots sorry that you do though if you know what I mean I can?t believe you are having to have so many tests, is that because there are so many different types? The articles I?ve just read talked about 100mg of low dose aspirin daily from 8 weeks but said that low-molecular-weight heparin is much more effective. I guess it depends on the individual situation. I think I?ll hold off taking any aspirin in the meantime, I had thought I might start taking it in anticipation but I think that would be unwise ? especially as one of the side effects of aspirin appears to be miscarriage Thank you for telling me some positives I have gone from hoping that my miscarriage was a one off stroke of bad luck to imagining recurrent miscarriage and stillbirths and nasty thrombotic veins for me

Thanks Ready hon

On the up side, my thyroid, liver, kidneys and sugar levels are normal and my blood count is apparently very good at 15 (haven?t got a clue what that means). Still waiting for the iron results. Relieved my liver is ok!

my sister, taylormama , has blood clotting issues, and has had 3 DVTs and has real difficulty maintaing her blood levels, but she is receiving treatment

the good news is , she had her first child last year, all perfectly normal, good delivery, no problems !

we have all had full thrombophilia screening as a result

she had to take clexayn throughout pregnancy and for a few weeks after the birth

good luck, hope this knowledge enables you to be able to have your much longed for baby

good luck

am not an expert but after 3 losses i subsequently took baby aspirin in pregnancy (for the first trimesters)

against gp's advice i should add

Hi MrsMcJnr - I just wanted to send you lots and lots of hugs
From the m/c thread, I know what a lovely person you are and I am truly gutted that such a thing had happened to you...
I also just wanted to say that my SIL had exactly the same problem and after 1 m/c she did get pg again and have my niece. She had to have injections every day throughout which wasn't exactly pleasant but she now has a beautiful bouncy wee girl...I am crossing everything I have that this will happen to you too!!

MrsMc for the loss of your baby
I have unexplained DVTs - have had 2 and most likely a third during my PG last year. My thrombophilia screen was negative ... i used heparin every day from 17 weeks when i was PG - injected myself and then for 6 weeks after birth i was on warfarin. I currently take aspirin every day but i don't think you should self-medicate - hope you get something sorted soon xxx

thank you Lulumama, I love that you and Taylormama have similar names by the way. It was kind of you to share that, it does give me hope I am, so delighted to hear that there was a good outcome for you Taylormama When I think back, I cannot understand why I wasn?t tested 3 years ago when I had suspected DVTs and all manor of other weird symptoms

Tutter ? that is interesting. What made you decide to take the aspirin and what quantities did you take?

Thank you Basilbrush that was very sweet of you. I?ll be joining you on the m/c thread later on, been a bit self-absorbed today Really glad it worked out for your SIL I?ve read about the heparin injections, apparently you have to do them into your tummy! I suppose that makes perfect sense. Taylormama ? is that where you had to do yours?

Hi MrsMcJr - I'm so sorry to hear about your test results, its just yet another thing for you to worry about isn't it!! . There is some strong evidence to prove aspirin does work for people with clotting disorders and they usually go on to take heparin (or clexane, its the same thing)during pregnancy to protect the placenta etc. Yes its an sub- cutaneous injection which you can inject on a daily basis into any fatty tissue on the upper arms, thighs or more favourably the stomach (always plenty more fat there on most people ). It's good news that your other blood levels are ok, I'm guessing the 15 figure is your haemaglobin which is within the normal range, they may have checked this as you were feeling so tired and may have suspected anaemia. When it comes to taking aspirin please do follow medical guidance with it, a lot of people seem to think its the answer and just start taking it but it can have some side effects (ie it was taken off the market about 20yrs ago because of this)so pleae check first. I worked with a couple of girls who had a similar problem and with the use of anti-coagulants and monitoring they went on to have healthy pregnancies....please don't give up hope yet chick

MrsMc - i did have a good outcome - healthy mummy and baby!! I injected myself in my thighs and upper arms - wasn't too bad.

hey MrsMac, sorry to hear about your results.

I'm Factor V Leiden, knew when I was quite young as my mum had a DVT but no-one (including the specialists at the high risk pg unit) mentioned anything about management during TTC or early pg.
I just tried to read as much as I could and do absolutely everything else right - food, exercise etc - and it has kind of helped the doctors etc see me realise that I'm clued up re thrombophilia and about pg in general.

Treacletart had a mc that flagged up a clotting prob and is injecting heparin throughout her current pg - there were some others as well - Uki I think...

Will send them over if I see them - there are a lot of us on here!

I have Factor V Leiden - diagnosed about 10 years ago after I'd had several hundered clots in 1 of my legs. I was on Warfarin for years, then as soon as I fell pregnant I was immediately shown how to inject myself, and had to do so twice daily throughout pregnancy. I gave birth to a perfectly healthy baby 17 months ago!

Having Factor V (or any of the other clotting problems) does increase the risk of miscarriage, but as long as you know about it it can be managed, and you definitely can have a healthy baby.

I'm sorry that you had to find out about your clotting disorder the way that you did. But looking forward, all the haemotologists that I've dealt with have been brilliant, and will talk you through the best treatment for you.

Good luck with it!

Thanks Pinky thing is, I hate blood and needles and usually faint at the sight, have always blamed that on my low blood pressure! Might just have to get used to them. There won?t be any problems finding a fatty bit on me Thanks for explaining the ?15? number, she seemed to think that was a good figure. Yet to get iron results but hopefully they?ll be ok if blood count is. Don?t worry won?t self-medicate and won?t give up

MrsBadger ? thanks sorry you have that glad you had a healthy pregnancy and baby were you high risk for other reasons or were they related? Thanks for looking out for those ladies for me not met Treacletart but I do know Uki.

Hello Gumbo ? thanks for sharing that with me and congratulations on your baby! I do think it is so much better to know about these things. I am just so glad the GP agreed to test me. I couldn?t have bard to MC again and find out that I could have prevented it.

Hi there - I can't give any specific advice on clotting or TTc with thrombophilia I'm afraid. MrsB's not quite right about my history. I had multiple Pulmonary Embolisms (lung clots) 3 week after DS was born nearly 4 years ago. It was a very scary experience and I was lucky to get treatment before they killed me. I had to take warfarin tablets for 6 months afterwards but bizarrely nobody thought to test me at any stage for thrombophilia. I had a missed MC last October and it was only through pushing my GP twice following a raised eyebrow from my surgeon at my ERPC that with this pregnancy (due Aug) I'm under consultant care and injecting Clexane, a low dose heparin, daily (not as horrible as you might think). I can't be tested now for thrombophilia because I'm pregnant, but I'll need to make sure once my DD is born. I know you're angry (as I was) at not being diagnosed sooner but - although your mc could have been caused by any number of factors - the important thing is that your future pregnancies won't be at unnecessary risk and your own health won't be jeopardised by dvt's or other clots. I still shudder at the thought that I might have left DH and DS alone.

sorry for getting yr details wrong, treacle - hoped you'd come on and put me right

oh, and MrsMc, the Factor V is my only risk but they're taking no chances and sent me straight there.
(BadgerCub not due till end of Aug but good to hear your faith in everything going well!)

Hello. I have factor v leiden. my history 2 mcs, i baby with low birthweight but otherwise fine on no treatment, 3 mcs, diagnosis, daily aspirin and fragmin (kind of heparin during pg, had healthy baby no 2. Now pg again (29 weeks)and on medication and all looks well. One useful form of support I found was the yahoo group for those who are pregnant and have factor v leiden at the following \link{http://health.groups.yahoo.com/group/FVL-PG/}I found that most of the lasiesare American. It may be FVL and pg related but you do get people with other clotting disroders on there. HTH

Hi Mrs Mc

Sorry to hear your news, it sounds bad, but i think it is great that you have been tested and have a result, you probably have been saved from countless more miscarriages.

i have mild thrombophilia and as you know suffered three m/c but thrombophilia didn't come up on first tests.

i'm now on 100mg of asprin a day, and all going well now. I started taking it as soon as i got BFP, there is some mixed new reports to say that asprin doesn't help, I went to the recurrent m/c cliniic and thay said i didn't need it . i went back to my Obstetrician and he said there was more chance it would help than wouldn't and as it presented no risk to try it. Glad I did as now 25 weeks pg.

Just throught I'd share that. There is hope.

I used to hate needles and blood tests too, but after having about 22 seperate blood tests some with 11 viles of blood taken, I can even look now !!! just keep your arm relaxed, wriggle fingers and chat to the nurse.

Good luck we are all barracking for you.

Hi MrsMac

I lost a bay and was diagnosed with hughes syndrome - a blod clotting disorder alos known as 'sticky' blood or anti-phosophplipid syndrome. I had to take a baby aspirin every day to prevent my platelets from sticking. I have had 2 healthy babies and I am symptomless for this disorder.

My main advice to you is STOP looking it up on the interenet - it is full of horror stories and often only people with bad experiences post things up abput it - I have ben fine and this is the first time I have posted - even on mumsnet.

This disordr is highly treatable - one of the most wonderful tings about this being the cause of miscarriage is how responsive it is to treatment - if I remember rightly the stats are so heavily on your side with just aspirin. Whereabouts are you - if you have a big teaching hospital near you then all the better.

This is a garbled post as I don;t know what to say but I remember how devaststed and confused I wa at my diagnosis - if I could tell that person years ago how fine it is and how little i worry and how much time I wasted fretting I so would.

The only thing that reminds me about this is taking an aspirin every day. THAT IS ALL.

Best wishes - i so know what you are going through - the unknown is always very scary.

Hi MrsMcJnr, just wanted to say that I have missed you! Hope it all works out for you xxx