It’s a long shot but are there any Factor Five Leiden people out there?

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So hard to get information about this online so hopefully Mumsnet can help.

My mum, aunt and cousin all have factor five Leiden and I realise now I should’ve probably pushed to get tested in my first pregnancy but it never came up during booking in as none of them have developed blood clots. I’m nearly 20 weeks now with my fourth pregnancy and have had two miscarriages. I’m starting to worry now as I’ve been googling and it looks like there is a link between FVL and miscarriage.

My question is who do I go to to try and get tested? GP or maternity consultant? Am I likely to be fobbed off as I have no history of clotting? I’m panicking I might have this and it’s going to take weeks to get tested and by that stage it might be too late. Any advice?

Hi! I have it - I was tested for it in my first pregnancy as my sister had previously had a DVT. I was on blood thinners from when I found out I had it.

I'm pregnant with my second baby now and have been on blood thinners from week 6. I am also under consultant care because of it.

In my experience, the midwives I've dealt with don't really understand it - when I said I had it at my booking in appointment the midwife sort of looked at me blankly and said 'i don't know where to put that on the form'. I had already notified my GP and had a consultant appointment so I didn't press it further with them.

I have had to be very firm regarding it. I have possibly made a bit of a nuisance of myself at times but I felt it was necessary. I should mention that although the Midwives don't seem familiar with the condition in my experience, they of course take my concerns extremely seriously and ask a lot of questions regarding it.

I would gather as much information as you can and go to your GP, ASAP. Take your research plus the info about your family history with you, and be prepared to be very forthright if needs be.

I am not familiar with this condition but have had to fight my corner for tests and referrals a couple of times now. Both times I was absolutely right to do so (my DC ended up needing operations at Great Ormond street)

Thanks to google, it is possible to find detailed & high quality information that puts you in a strong position to fight for what you need.

It’s likely your GP will know less than you - although they won’t always admit it! Don’t be afraid to be pushy.

If it doesn’t go well, you can get an appointment with a different GP. It might be worth a phone call to the midwife just in case they have any light to shed on this too

Best of luck x

Hi OP I have factor 5 leiden! I got tested by my GP about 10 years ago when my dad found out he had it as my uncle had recurrent DVTs and PEs and got diagnosed. The GP was happy to send the blood test off so that’s possibly the easiest place to start- they may ask you lots of questions about family history of clots etc so best to be prepared with any info you have. When the test can back as a carrier my GP got advice and guidance from a haematologist at the local hospital but apart from putting a note on my file and changing my contraceptive nothing else needed done at the time. Are you consultant led obstetric care? If so they will be happy to test and I would get in touch with them directly if so stating you strong family history. There is some research which shows a link between clotting issues and recurrent miscarriage and I believe they test for clotting disorders if you are investigated for multiple MC. I have never had any clots and my dad was in his late 50s when diagnosed and hasn’t had any clots either. In my first pregnancy it was managed with aspirin and I had growth scans to ensure the health of the placenta and then I had blood thinning injections for 8 weeks after delivery as this is when you are at higher risk of clots. I am currently 33 weeks pregnant and this time haven’t taken anything, having an extra scan at 34 weeks and planned for 8 weeks of blood thinning injections post partum again. I had a long discussion with my consultant about management and they have very clear guidelines on managing clotting disorders And will regularly calculate your ‘VTE risk’ and manage accordingly . It’s also worth asking for your family members and checking the results of your test if you have it to see is you are a hetero or homozygous carrier as this effects your risk factor and will be taken into consideration when deciding on management. Just to reassure you it is more common than you think it’s just not routinely tested for unless investigations are being done for very specific reasons e.g recurrent MC, multiple clots without a precipitating factor. I hope this helps please get in touch if you think I can help with any further questions. If you google it there are a couple of good resources explaining it from various NHS hospitals and a website called stop the clot.

Thank you everyone, I wasn’t sure if I’d get any responses! I am consultant led so that might be a good place to start, thanks!

I have Factor V Leiden (it’s actually pretty common) and I’m on daily injections but that’s only because I had a blood clot during my previous pregnancy. I wouldn’t have known about the diagnosis without the clot.
My sister fell pregnant shortly after me, and explained to the GP about my diagnosis in case she needed to be tested, but they told her no. She never was tested so doesn’t know if she has it or not, but her pregnancy was trouble free.

Interesting twinkle thank you! I was hoping they might test me as I have a history of miscarriage but apparently it’s debated whether there is a link between the two.