Factor V Leiden / Clexane

[GuppieK]

I wonder if anyone can help.

I've had three early miscarriages in the last year between 6 and 8 weeks. I've had tests at my local hospital and the only thing that's come back as positive is for Factor V Leiden.

The consultant has said that when I next get pregnant they'll prescribe Clexane until 14wks pregnant and 5mg folic acid. She hasn't advised aspirin. Apparently they used to advise taking it but now they don't.

The thing is, there's so much conflicting advice about. A lot of people seem to take 75mg aspirin from trying to conceive until 28 wks pregnant and, as it doesn't seem to have any drawbacks, I can't see why not to just try it.

I've also read that Factor V Leiden hasn't been linked to early miscarriages but that it can cause complications further down the line when you can get blood clots in the placenta. This worries me that something will go wrong later on, especially if they are saying to stop the Clexane at 14wks pregnant.

Can anyone who has been diagnosed with the same tell me what their specialist has advised? Does anyone take heparin later into the pregnancy or is there a reason to stop it earlier on? My specialist said they would only continue the Clexane later on if I suffer pre-eclampsia or had to have a caesarian.

Thanks for taking the time to read :-)

Sorry this is so long!

I was diagnosed with Factor V Leiden in 1997 when I was 19 and 6 weeks into my first pregnancy, I had not had any problems due to this but my sister who also has this had a blood clot at 25 so I was prescribed heperin (same as Clexane) from 20 weeks pregnant until 6 weeks after she was born.

Fast forward to now and in the past four years my sister has had another blood clot and I have had three early miscarriages (between 6 and 8 weeks) and three ectopic pregnancys. As we now need IVF to concieve I was refereed to see a consultant Hematologist at my local hospital to discuss treatment and she said that the there was no evidence that this condidtion causes miscarraige and they would only give me heperin because I'd had it before!

I went to see a consultant in a recurrent miscarriage clinic at another local hospital and he siad I should have heperin from the moment I'm pregnant until 6 weeks after birth and that I may have to pay for this myself as the other doctor was so unhelpful and we are not entitled to IVF on the NHS.

I suppose what I'm trying to say is every doctor has their own opinion and what I would do in your situation is try and speak to as many as possible before trying to become pregnant.

If you haven't already ask your GP for referrals to a hematologist at your local hospital and to your nearest recurrent miscarriage clinic. You may have to find out where this is yourself as GP's in my experience are a bit rubbish at this!

As a note I was advised after having my daughter to take 75mg aspirin daily for life as I had a family history of clots but I have only take it when trying to become pregnant. My eldest sister who also has Factor V Leiden has had no problems and has neve taken medication and had three children with no medication needed.

Let me know how you get on and good luck!

Hello, i'm sorry for your losses.
I've also lost three, it isn't easy, is it?

I don't know how much help I can be as i don' have Factor V, i have APS which is treated with Clexane and Aspirin, but what I wanted to say to you is that in my experience there is a HUGE difference in expertise and capabilities between some regional hosptials (such as the one I started off in) and the specialist recurrent miscarriage clinics and big teaching hospitals.

If I had my time again i'd have stopped faffing about with consultants who are jacks of all trades/masters of none and get SPECIALIST help from consultants who just deal with these issues, are publishing research papers on it etc.

I don't know where in the country you are, but the gold standard clinic in this country is st Mary's Recurrent MC unit in london, they take referrals from all over the country. Can you ask to be sent there/ afford to pay to go private if not?

(I'm at st thomas' in London as they are the specialists for APS, and I had to argue fairly strongly to get the referral, but i held my ground and it is so much better than my regional place)

Good luck

Thanks so much for your reply Amo101. Your experience (and your sister's) is such helpful information and I'm sorry to hear you've gone through mcs too.

When I saw the consultant I was initially pleased they had found a problem that they would treat, even though she stressed a link hadn't had been found between Factor V Leiden and miscarriage. But then I started reading about it online - about how there is a link between stillbirth and FVL and how specialists seem to prescribe Clexane throughout pregnancy - and now I'm so worried that if/when I get pregnant again I'll be high risk of losing the pregnancy later on, which I'm not sure I could bear.

My consultant said she'd spoken to the hematology dept at the hospital about when women should stop taking the Clexane and that they'd basically said there was no evidence it did anything anyway, so their best guess is when the placenta has formed. It all sounds so vague, which isn't reassuring!

Thanks for the advice about going back to the GP and seeing about a referral to an early miscarriage clinic. I think I'll do this. I feel a bit bad that I'm doubting the consultant's advice and kind of self diagnosing what I need on the internet - but it doesn't make sense to me if I'm high risk of a blood clot stopping the thing that could be stopping a blood clot forming at 14 weeks!

CaptainHoratio - thanks for your reply and sorry to hear you've gone through three losses too. Your experience and advice is really useful to me. I was starting to suspect there are big differences in capabilities between local hospital gynacology depts and the bigger specialist hospitals, but you kind of assume they'd do what's best for you and refer you to a place with enough expertise really.

I'm in Bristol so London might be closest for me too. I'm going to make an appointment to see my GP and try to get a referral. If not, it's possible we could go private. I just really want to do everything that's within my control to get a good outcome this time as, like you say, the disappointments aren't easy to deal with.

I'm glad that you're getting good treatment at St Thomas' and best of luck with achieving a healthy pregnancy next time too. x

Thanks for your best wishes, Guppie, perhaps we will both be TTC soon....

From what I've heard on the grapevine, it seems to make life a bit easier if you can get an nhs referral rather than paying to go private (my friend went private but only one day a week, and private sec only worked that day too, so could only phone for info one day a week and then the doc was generally too busy to talk to her etc).

Do they have referral criteria on their website you could print off and take with you to the GP? That might help? I think my friend found she could only get referred their by a consultant, not their gp, although this might of changed...

sorry get referred there by a consultant

Sorry to hear about everyone's losses. GuppieK, my story is very similar to yours. I've had two MCs, one at 8/9 weeks and the second at 17 weeks. Due to a huge hospital cock-up with the second baby I lost, my GP agreed to run all the tests on me and my husband despite only (?!) having had two losses. The only thing that came back was Factor V Leiden (heterozygous). I was then referred to see a consultant at my local hospital.
The consultant told me that he didn't believe that there was a link between Factor V and miscarriage and Factor V had not caused my 2nd MC (he didn't know what the cause was). However, he suggested that while I was TTC I take 75mg aspirin daily and that as soon as I get a BFP I should get an appointment to see him immediately so that he can decide whether to put me on heparin. He didn't mention whether I should be on heparin for all or just some of the pregnancy.
To muddy the waters, my boss has also had 3 MCs while doing IVF and has been to see Prof Reagan at St Mary's privately. She has been diagnosed with blood clotting issues (although not Factor V) and has been told NOT to take aspirin while TTC as there is evidence to show it interferes with successful implantation.
We're TTC at the moment and I'm taking the aspirin as well as folic acid and vit D. However, I'm not feeling particularly positive that if I do get pregnant anyone actually knows how they can prevent another MC from happening.
Any advice would be gratefully received!!

Hello, I'm so sorry for your losses portia, i've lost one at 20 weeks, i know those late ones are just soul destroying...

Like your boss I have been told NOT to take aspirin until I get my BFP as it might impede implantation. I also have clotting (hughes), so I don't know if this advice is specific for certain clotting disorders or not- perhaps its safe for everyone else?

Please, please don't fall for the consultant's crap wrt 'get an appointment when you get your BFP so i can decide about Heparin'. That is stupid, lazy doctoring on their part.

They did this last time to me, I asked for an urgent apointment as per their advice at 4+1, got in to see them at 8+2 and was started on heparin.

A scan at 11 weeks showed the baby died at bwtween 7+5 (when def ok) to 8 weeks, so 2 to 4 days before I got the heparin.

Genetic testing showed the baby was perfect, it was definitely the clotting again, and the consultants reaction to this was 'well, next time we'll start the heparin at 4 weeks, i'll send your GP a letter so they can start it before you see me as it might be too late otherwise'

Why the bloody hell they didn't do this last time and save the baby I will never know.

I don't know where your hospital is, but one thing i've learnt through all this is that there is a MASSIVE difference in the knowledge and skill of some local hopsital consultants, and those based at the big london teaching hospitals doing research into the problem. Would a st mary's referral (privately) be an option for you?

Hi portiathecat. It's frustrating isn't it, all this conflicting advice. My consultant basically said she'd give me the heparin but that the hematology specialists had said to her it's not proven to help anyway. Very reassuring! I feel like she's played it down and perhaps FVL isn't a massive risk factor for the future, but then there's lots of stuff on the internet that's quite scary that highlights the risk of a woman getting a blood clot when pregnant, having a stillbirth due to clotting in the placenta etc.

She did tell me not to take aspirin while trying to conceive as the advice has changed and a couple of people on here have said they've heard it can interfere with implantation, so I'm not going to take it until I'm pregnant. In the meantime, I've started drinking purple grape juice and taking garlic capsules (as apparently have anticoagulant effect on blood). I'm also going to up my exercise as I sit in front of a computer all day, car for two hours and only exercise once or twice a week. That's as much because I'm now slightly paranoid I'm going to get a blood clot, never mind a potential baby!

It's so consuming and stressful isn't it? I feel the same as you that if I do get pregnant again I don't feel anyone knows what will and won't help. I think you just have to make your own mind up about what to do as the specialists all say different things, people all have different experiences and things that worked for them and didn't etc. It's really not useful when there's so much at risk. The doctor/specialist both told me cheerily that statistically I'll have a baby even if I don't get any treatment and that the only thing shown to have worked is hand-holding, regular scans etc. Which is great, but I don't really feel like I can go through this more than a couple more times with the promise I'll get there eventually, so every pregnancy is pretty precious to me.

CaptainHoratio - many thanks for your advice and sympathies with your late loss as well. I'm currently investigating getting a private appointment at St Mary's.
GuppieK - yes, I share your frustration. And stress is probably the last thing that we need! I'm upping my intake of purple grape juice, garlic and ginger (I've found that it is an anticoagulant too!) as well as consciously taking more regular exercise. At least it feels like I'm doing something positive and I'm feeling better too.

Posting to this chat 13 tears later - now on my 6th loss between 6 and 8 weeks. My rainbow son was born in between the 3rd and 4th, having paid privately and prescribed Clexane for my FVL. Now 3 in a row losses and the EPU still refuse to prescribe Clexane as there’s not enough evidence - maybe if they investigated or made case notes against records for early loss, there would be more evidence. I just feel I am not listened to and these losses could have been prevented. My private consultant via Nuffield Health cost over £2k for consultation, lab tests and medication throughout the first 16 weeks of pregnancy but my son was born - surely this is enough evidence to support me again? So upset and frustrating to be going through this again and being dismissed and unheard.