Heterozygous Factor V Leiden and pregnancy

[MommaT1020]

I am 23 years old and just found out that I am Positive for one copy of the R506Q ( Factor V Leiden) mutation. I aquired a DVT in my left leg at 9 weeks gestation during my second pregnancy and have never had any major prior health problems (well i've had endometriosis but i think that is irrelevant, but if not please advise) or known family history of thrombosis. I didn't have any problems with my first pregnancy and have had surgery twice for the endometriosis which resulted in the removal of my right fallopian tube. Also the report says that my Protein S activity is slightly low at 46% and was told the normal range is between 60-140% . I've been reading up on Coumadin and the risks it has on internal hemmoraging and am a little scared of the effects.My doctor has told me that I will have to take the pills for the rest of my life. Also the risks associated with pregnancy and FVL are frightening. And am also concerned that I may have passed the gene to my sons but also while reasearching I've found that most say newborns and asymptomatic children should not be tested.

Questions

1. Should I continue the 5mg a day on Coumadin since this is my 1st occurance and taking into consideration my family history of no clots (also in getting a doppler reading a week ago the clot is still there but is diminishing slowly)? or should i continue until clot is completely gone? Could taking a baby aspirin a day and adding herbs with anticoagulant activity do the job?

2. Does my Protein S activity put me at a greater risk of obtaining clots?

3. Should I have my children checked? If so at what age? (they are 4 yrs. old and 10 weeks)

4.Will I have circulatory problems for the rest of my life (the leg still swells periodically when on my feet or sitting for long periods of time)?

5. Why didn't I get a clot with my first pregnancy or after the surgeries? And since I got it during pregnancy what are the chances of getting another if I were to get pregnant again?

6. Should I even consider going through another pregnancy and what is the reality of my health issues and the health and risks of the unborn child that could arise ?  

[little_linz2001]

I also forgot to mention in my last post that I have 2 children, a 3 year old boy and a 1 year old girl.  They were both tested at a year when they were routine tested for lead and my 3 year old boy has it, my girl doesn't.  From what I gather, it's a lot easier to deal with when you're a boy than a girl because of periods and pregnancies.  Just be sure to ALWAYS let your doctor know that you have it (and them too if they do) for surgery purposes....and if they already know, remind them everytime.  I also have the Protein S deficiency which I gather pretty much goes hand in hand with the Factor 5.  I don't think it puts you at too much of a greater risk.  But this Factor 5 does mean that you got it from one of your parents...if you weren't aware of that.  Some people can go on their WHOLE lives with never having a clot and a lot of people walking on this earth right now aren't even aware they have it...we're one of a lucky few to know (though you may not look at it that way)..  Good luck with everything!

[cirella]

Hi,  Well, I'm glad I came here today.  I've been looking here for similar questions but not posted.  I have just found out that I am positive for the Factor II and VIII gene mutation but not the V.  I do have a family history, 2 sisters have had 2 clots each both pulmonary and DVT.  My Protein S is also low.

I'm on HRT after a total hysterectomy last March so I have been referred to a Hematologist.  My GYN wasn't sure about the Factor VIII and transdermal hormone replacement.  What I have going in my favor is that I am 49 and had my 2 kids, have been on the pill at one time in my life, and have had major surgery, all with no problems but now that I know I have this I'm not sure what my future holds.  I really don't want to be on Coumadin or stop the HRT.

It's confusing trying to look up information.  I thank you for your questions b/c I have been unsure what to ask, other than most obvious ones concerning my HRT and having my 2 girls tested (which I will do b/c it will affect them the rest of their lives).  

The one question that I think I can answer is the first one.  I'd say, unless your doctor advises you to stop the Coumadin, continue to take it.  It doesn't matter that you haven't a family history or that it's your first occurrence, you now have a history of clots.  Both the aforementioned sisters did not know they were positive for the Factors when their clots occurred but they've been on Coumadin since the clots happened.

I'd suggest seeing a Hematologist unless you have already.  They will be able to answer you questions more thoroughly.

I agree with little_linz2001...now we know and although it's kind of strange to me knowing this, I'm glad I know now before something happened.  

Good luck to you!