Leiden Factor V?

smurph

I have a 20 month old and had a normal pregnancy with her.  We just found out that my Mom tested positive for LFV at 76 years of age and 2 kids.  So now I need to be tested for this as we are considering #2.  The thought of being high risk scares me.

 What you can tell me about your experience?  Do you think I would be placed on lovonox and be high risk even with the successful and normal pregnancy history that I have?  I'm not sure if LFV is something that they would treat if I'm not presenting any actual symptoms. 

 Thanks so much for any advice on pregnancy with this condition!

trickywoo

Treatment can really vary from OB to OB.

They typically look at whether you are hetero (one gene) FVL or homo (two genes) FVL.  If you are homozygous FVL, you will probably be placed on a low dose of heparin or lovenox.

 If you are heterozygous FVL and have no significant history of miscarriage or family history of clotting, you may not be placed on any thinners.

I am hetero FVL and hetero MTHFR.  My 30 yr. old brother had a DVT two years ago which was how we found the genetic condition.  I had one miscarriage and one full-term pregnancy, but decided to go for a preventative treatment during my next pregnancy. 

I was on 40 mg of lovenox and one baby aspirin daily during the first two trimesters.  Then 80 mg lovenox in the third.  I was induced at 38 weeksa nd had no problems.  I also saw a hematologist during my pregnancy.

The decision may be up to you.  You may have no problems with another pregnancy.  Or you may.  They really know so little about how FVL adversely affects pregnancy.  You may want to search the yahoo groups for FVL-pregnancy.  There's a lot of helpful information there.

I do know that with increased maternal age, there is a greater risk of clotting.  And, some mothers who have uneventful pregnancies go on to have problems in future pregnancies.  It's really a difficult decision to make.  Even though I had only had one miscarriage and we had no way of knowing whether it was related to FVL, I've chosen to be treated preventatively during pregnancy.  I don't want to have recurrent miscarriage or late term loss before deciding to pursue treatment.

Good luck!  For what it's worth, I haven't had any trouble with the blood thinners.  

alizabethy

I'm Factor V Leiden (heterozygous). I'd get tested. If you are positive, I'd talk to a high-risk OB about going on thinners even if you've had a successful pregnancy without incident. 

Here's why - I took birth control pills for 10 years, not one problem. Then one day I ended up with a clot from my ankle to my hip and in my lungs. So even if the pregnancy hormones didn't mess you up in the past, it can happen.

Another reason I recommend the blood thinners is because (as PP mentioned) it's really not that bad at all! I took Lovenox 1x a day until I was about 33 weeks; then I switched to Heparin 2x a day for the rest of my pregnancy. The shots aren't as bad as you'd think, and I felt better knowing I was doing everything I could to prevent problems.

Hope that helps, and best of luck!  

gringa78

I'm hetero MTHFR and positive for lupus anticoagulant...not Factor V Leiden, but similar.  I'm on baby aspirin and lovenox 40mg plus a super prenatal (Neevo) to take care of possible folic acid deficiency.  It's not a big deal at all once you get the hang of the shot.  The treatment is nothing to be fearful of.

Jessalicious01

If your mom is hetero there's chance you don't have it. But your dad could also have had it and just not ever had a problem. So you should get tested. 

For example: I am Homozygous (have 2 FVL genes). So my mom is obviously hetero at least. She's had 3 pregnancies and smoked and still never had a clot.

I was on BCP's for 8 yrs until I had a problem. I was so upset about my diagnosis at first, but so thankful it was caught before something devastating happened. I could have lost a baby, or died myself.

So my advice would be to get tested, hope for the best, but if you find out you have it be thankful you were able to catch it before something happened.

My experience was that I had 2 clots in my calf a few yrs ago. I asked to be tested for FVL because I worked with OB Dr's who told me BCP's alone do not cause clots, there needs to be something else contributing to it (smoking, flying, surgery, etc). Since I hadn't done any of those things I wanted to get tested for this. They were so surprised that I came back as homozygous and lived for 22 yrs without ever having a clot before. I was put on Coumadin indefinitely. I was told when I wanted to start TTC I would need to switch to Lovenox (coumadin causes birth defects). I switched in june 2008. Got pregnant and miscarried. Continued on the lovenox to start TTC again as soon as I could (better than switching back and forth between coumadin and Lovenox). Got a BFP in March, stayed on the Lovenox until 36 weeks when they switched me to heparin. Delivered at 37 weeks a very healthy happy little peanut of a girl. Stayed on the lovenox for 6 weeks PP and then switched back to coumadin. Who knows if the outcome would have been different had I never requested to be tested for FVL and ready to manage a high risk pregnancy.

GL to you!! I hope you don't have it, but if you do know there's lots of us here to talk too : ) 

smeyer

I'm homozygous for Factor V Leiden and hetero for MTHFR.  I've never had a clot but was diagnosed after a recurrent pregnancy loss panel.  Like several others have mentioned, I am and will be on 40mg Lovenox injections thru the bulk of my pregnancy (probably about 33w) then I'll switch to Heparin.  Also, I take extra folic acid to be safe.  In my case, I am high risk but it's more due to the fact that I'm carrying twins and have a history of losses than the Factor V and MTHFR.