My doctor told me that if I had Homozygous Factor V Leiden that I would need to take coumadin for the rest of my life to avoid a blood clot and having had one and knowing how dangerous a clot is, I would not be willing to take the risk of not taking coumadin. I would follow your doctor's advice. Then when you see the Hematologist, they will confirm the diagnosis and treatment.

I've had Factor V Leiden Mutation for 3 1/2 years now since my blood clots. I will be on coumadin forever. I have a coagucheck machine (similar to something they use for diabetics), it has to be recommended by your doctor. I check my blood at home weekly and am so used to adjusting my foods thicken and thin my blood it's like second nature. My skin is very thin and tears easily from the coumadin by I always thank God that at least I have my legs. Had 2 clots in my left leg at 64. My daughter was checked and she did not get the gene, if she would have, they would already be monitoring her blood, not on coumadin, but probably regular blood checks. In all, I'd rather be on it and feel safer than not.

Thank you all for the responses. I should mention I am only 32, and again have never had a blood clot. I live a very active lifestyle and the thought of giving it up in order to avoid the potential complications from Coumadin is not an appealing thought. I know there is a very significant difference between homozygous for Factor V and Heterozygous in how it is treated, but I would think that before jumping straight to the coumadin it would make sense to evaluate my baseline, i.e. what are my factors now, and if I indeed do not currently have a blood clot, is it possible to use natural methods to maintain them in the desired range.

In general as well the anxiety is really frustrating me. Every soreness, or ache I get, that used to mean nothing, I am worried it is a DVT or PE. Did any of you find out you were Factor V Homozygous prior to your first blood clot? for those who are homozygous, what age were you when you had to deal with your first DVT?

Just seems like over-reaction to start someone who is only 32, no history of clots, who lives an active lifestyle on coumadin without a baseline scan, test, etc.

Thanks in advance for everyone's help

I don't think it matters that you have never had a blood clot, what matters is that you not have one that endangers your life. My guess is that it won't hurt so much to take the coumadin for a short period of time until you see your Hemotologist.

No, no, no. You do NOT need to be on warfarin if you've never had a blood clot, or other condition like heart issues, atrial fib, etc.. I am homozygous FVL, but have had a massive DVT and small PE's and will be on warfarin for the long term, but ONLY because I've clotted. If I'd have never clotted, I'd have never even KNOWN about my genetic status. There are millions of people in this world who have risk factors who never clot once, and it would be folly to put them all on warfarin.
Warfarin is a powerful anticoagulant that carries a black box warning. It has it's own risks that are not to be taken lightly. You don't get it because your afraid you MAY clot. You get it because you already have. Your hematologist will most likely be the voice of reason on this subject.

FVL Homozygous does, by itself, increase the risk of a blood clot to as much as 80 times that of the general population.
http://www.med.illinois.edu/hematology/pdf%20files/factorvleiden.pdf

Still, many and quite possibly most homozygous FVL carriers live out their days without any major clotting incidents.
Part of the reason that a doctor would prescribe Warfarin as a preventive measure could be that its effects are easier than ever to monitor, thanks to self-testing tools. The risk part of the risk vs benefit is lower than it used to be. Personally, if I did not absolutely have to be on prescriptions for the long haul then I would not be on prescriptions. With or without drugs, vigilant application of common sense goes a long way. When traveling, get some leg movement every 2 hours if by car, every hour if by plane. Do routine foot-fidgeting during periods of long sitting. Stay hydrated. While it is widely believed that aspirin does essentially nothing to mitigate venous clots (it's primary effectiveness is for arterial ones) it still cannot do harm.

Hi, I'm to the group here and see this post is a couple months old, but going to chime in still because I've never heard of someone going on thinners just because they have Factor V and I'm curious how did you find out you even have Factor V if you haven't clotted? Do you have a family history so you got tested as precaution? Going on thinners is an important personal decision with help of your doctors, but if I were you and I haven't clotted I would just take the easy precautions and natural routes to lower your risk (stay hydrated and active, wear compression socks and walk around when you fly, don't participate in contact sports) and continue your happy blood thinner free life. Blood thinners are no picnic and as LauraLu pointed out simply being on blood thinners poses it's own risks as well.

To answer your query - I was 31 when I had my DVT and found out I was factor V homozygous. It's my understanding after 1clotting episode homozygotes are supposed to consider lifelong thinners, but even then it depends on the person and situation. No one else in my entire family history has had a single blood clot to our knowledge and I provoked mine with a bunch of controllable risk factors so my Dr's think I can eventually go off thinners as long as I lower my controllable risks (no birth control pills, walk around on long flights and every hour at work, no contact sports, stay hydrated and exercise, wear compression stockings to promote flow). One of my specialists said it seems Dr's are noticing there are "dormant" strings of Factor V in some families so perhaps my family has a dormant form since obviously both my parents have it, some of my grandparents had it, and possibly my 3 adult siblings have it and yet I'm the only one who clotted so far. And I had to stack up the risk factors before I even clotted so I could have possibly lived to 100 without clotting.

Okay, finally, I'm curious... did you see a hematologist and did they put you on thinners? If the answer is yes (I would be surprised), you might also consider a low dose of thinners.

This thread is old, but I REALLY hope you have NOT gone on anticoags.

My entire immediate family (and some extended) have FVL. My brother and mom have not had problems. I'm hetero and had two DVTs simultaneously - I came off coumadin after 7 months and haven't had any problems in the 4 years since. My father is hetero, has had small peripheral clots and came off coumadin after 6 months, no problems in the year since. My sister is homo, had a peripheral arm clot when she was a teen, but never went on coumadin and has never clotted. She isn't on coumadin and will not be until she has an event.

My clots are the reason we were tested, but the risks of constantly be on coumadin unnecessarily is so much greater than our FVL diagnosis for our family. We women have come off hormone replacement or birth control. We all drink more water and move more than we used to, and I wear compression stockings when I travel now. Common sense can go a lot farther than medical science in some circumstances.

Hope you're doing well, and have sought a second opinion.

I'm homo for FVL and AT3 with history of multiple PEs DVTs and uncontrolled clotting BUT all triggered by surgery. I'm not taking anticoagulants but know my triggers and my doctors know my triggers so not a problem.

I was just diagnosed Factor V Leiden after my second PE (Multiple PE's in both lungs). My hemotologis told me some people are controlled on a baby aspirin a day. Unfortuntately for me, I am not one of them as I was taking a full 325 mg aspirin every day and still had the mutliple clots. SO warfarin for me forever. It sucks, but I am here for my family still.

See your doc before making any decision about taking or not taking something as significant as warfarin forever.