Factor V Leiden concerns

[Emzerness]

Hello everyone, i'm Emma, a newbie here and just after a bit of advice.
Only found out I was pregnant a few days ago with my first and i'm about 5 weeks along.
I have factor v leiden, just the one gene. I was always told by my doctor that It was probably best to inject blood thinners daily throughout the pregnancy and then a while afterwards. However, after speaking to a hematologist, they're now saying I wont really be high risk til after the baby is born. I don't feel very reassured though because i looked on google (I know, i know..) and its saying that thick blood can reduce the oxygen to the baby and affect growth :( I'm scared about things going wrong. Keep thinking I should argue this and try make them reconsider the blood thinners?
Anyone had any experience with this or think I should just wait til the 12 week scan and see if baby is growing as should be?

Congratulations for your pregnancy! And sorry you already have to worry.

I don't have Factor V Leiden, but hopefully someone will be along soon, there are lots of ladies on these forums who do.
From what I have read on other threads, I would have expected that you would be taking anticoagulants throughout your pregnancy due to the risks that you have mentioned, which could affect your baby. Are the doctors saying that because you only have one allele of the faulty gene, you have a milder form? But why would the risk be higher after birth? This would be the risk to yourself, not your baby.

I would ask for more details, don't feel bad about pestering them! Hope you get some clear answers.

Thank you! I will definitely mention it again, just hate the thought of having a miscarriage due to not taking any precautions.

I found at my midwife booking they do a dvt risk assessment and if person scores above a certain number than clexane was given. This was at 8 weeks. I scored 7 due to: Factor V Leiden, 2 other blood clotting disorders, family history, an infection, over 40 ... Where's with my 1st pregnancy they did not assess or prescribe clexane injections even though all but the age was the same. So maybe see if your mw does the same?

Sorry so should say have clexane from 8 weeks and until 6 weeks post partum. However I have never seen a haematologist.

rooibos is right - the midwife will assess you at the booking appt, however, it might be worth asking about it all now. I had a DVT a few years ago and therefore had to start the heparin as soon as I got my BFP - slightly different situation, but I guess it won't hurt to get more information.
Heparin has a very welcome 'side-effect' in that it can help to prevent miscarriage (regardless whether you have a blood condition or not), so that could be an added bonus. But in your case, I would think it's required to protect both you and your baby.

emz I have heterozygous factor v leiden same as you. I didn't have any fragmin until after my ds was born in my first pregnancy. However I got told this time the guidelines had changed and it was now advised to inject thinners at 24 weeks. At 12 weeks I went to a+e with chest pains and breathlessness, after investigation they found out I had clots in both lungs. I am now 16 weeks and have to inject fragmin twice a day. I tend to ignore things like that usually but because I am pg I decided to just get it checked. I was really shocked. You should be fine but please just be aware of any pains in your legs or chest. Your welcome to pm me if you want to chat. I think I was just unlucky! My dsis has it and sailed through 3 pregnancies with no problems. Congrats by the way.

Thank you for all the replies. It still worries me, and my boyfriend is getting fed up with me because it's all i keep going on about but I do feel like it doesn't get taken seriously enough.
Battleshiphips reading your story has scared me a little lol
I've had an ache in my leg since yesterday, couldn't lay on that side last night but they both look the same, not warm or anything. But I do think If Its the same tomorrow i'll ring the doctor.
I just feel like maybe i'm over reacting a bit but then again i'm still in shock from learning that i'm pregnant, everythings been happening at 1000miles an hour since then.

Hi emzerness, I've been wondering the same as you - I'm also fvl heterozygous. I've been on clexane from 6-12 wks but for another reason (which cloudjumper touched on). I've seen a haematologist who said there's no evidence that aspirin and heparin have an effect on clotting with this type of condition but if it was APS (for example) there is evidence do he would have recommended treatment. My consultant hasn't recommended any other treatment, I think this is due to being only heterozygous and not having any history of clots etc. I'm taking aspirin but that's my decision and I can't say I'm convinced it will help but it makes me feel a bit better. I'm due to fly long haul in Nov and will be taking clexane shots before and after flying as a precaution.

Ah I'm sorry didn't mean to scare you! I just don't feel that they make us aware enough. To be a bit more clear my pain was severe. I didn't sleep for 72 hours straight. You do get aches and pains anyway during pregnancy. I think if you had a dvt or PE you would definitely know about it. Just try to keep as active as you can. As I said I didn't get any with my first pregnancy. I also have some other risk factors. If you are generally in good health it's not a problem. As someone else said they do a risk assessment and mine was high. So for example if the only risk you have is fvl then you probably won't be prescribed anything. I answered yes to each one of the risk questions! They'll go through this at your booking appt. Really sorry didnt mean to worry you!