Factor V Leiden Support Community Group
This is a group for anyone who has Factor V Leiden, a clotting disorder. Or people who know someone with this condition.
I am 42 and homozygous for FVL. Before I knew about it, when I was in my 20's, I had a miscarriage and then a pregnancy with toxemia/pre-eclampsia. Then I had a DVT 15 years ago after breaking my ankle in 4 places. My leg clotted from the ankle to the groin -it was absolutely purple by the time they got me admitted. This damaged the valves in my leg and I was told that it would swell from now on and I probably needed to wear compression stockings and be on Coumadin from now on since now the blood would be pooling more because of the damaged valves. We are military and were stationed at the same base for 12 years, but even if we didn't move, our doctors often did. One came along after being on Coumadin for 5 years and took me off of it. He said that the risk of being on Coumadin was greater than the risk of developing another clot.
I have been without Coumadin for about 10 years. I have tried to make sure that I drink a lot of water, eat flax seeds, take vitamin K and all of that, but sometimes, I am inconsistent with it, and I also like to drink green smoothies and make dishes with spinach and kale (which are my favorite greens for both), so it scares me a little. About 5 years ago, I got a really bad sunburn on my legs from tubing on the river. My legs swelled up where it didn't even look like I had knees and when I got out of bed the next day, I had a pain in my left leg (the other one) that felt just like when I had a blood clot -only it didn't last as long and it wasn't as bad. It did this every time I would stand up, but then go away. I went to the ER and the dr. told me the burn was not that bad and to go home and it would be better soon -he didn't even think it was worth checking for blood clots just based on what I told him. Funny though that ever since that happened, that leg now swells every day too -just not as bad as the other leg. I'm really thinking I must have had a small one that dissolved on it's own, but maybe did some damage.
Anyway, all this time, I just took that doctor's word for it and thought that must be normal, but recently, I wanted to start taking some greens in powdered form and wondered about the vitamin K in it. When I started researching to see if anyone with FVL was taking anything like that, I started seeing all of these posts where people who had FVL were kept on blood thinners. Now, I'm wondering if I should go back and ask to be referred to a specialist again. From what I'm reading, with it being Homozygous and with having a previous DVT and possibly another one, maybe I should be on it!
I have been without Coumadin for about 10 years. I have tried to make sure that I drink a lot of water, eat flax seeds, take vitamin K and all of that, but sometimes, I am inconsistent with it, and I also like to drink green smoothies and make dishes with spinach and kale (which are my favorite greens for both), so it scares me a little. About 5 years ago, I got a really bad sunburn on my legs from tubing on the river. My legs swelled up where it didn't even look like I had knees and when I got out of bed the next day, I had a pain in my left leg (the other one) that felt just like when I had a blood clot -only it didn't last as long and it wasn't as bad. It did this every time I would stand up, but then go away. I went to the ER and the dr. told me the burn was not that bad and to go home and it would be better soon -he didn't even think it was worth checking for blood clots just based on what I told him. Funny though that ever since that happened, that leg now swells every day too -just not as bad as the other leg. I'm really thinking I must have had a small one that dissolved on it's own, but maybe did some damage.
Anyway, all this time, I just took that doctor's word for it and thought that must be normal, but recently, I wanted to start taking some greens in powdered form and wondered about the vitamin K in it. When I started researching to see if anyone with FVL was taking anything like that, I started seeing all of these posts where people who had FVL were kept on blood thinners. Now, I'm wondering if I should go back and ask to be referred to a specialist again. From what I'm reading, with it being Homozygous and with having a previous DVT and possibly another one, maybe I should be on it!
I've been on coumadin for going on 7 years, due to clots in my leg caused by FVL. I hate it because I know it contains rat poison. I can't for the life of me understand how you went off of it and ate a lot of Vitamin K. I know that I'm supposed to stay away from K, because it counteracts the blood thinner. In my mind, I would think the K is keeping your blood thicker, which would lead to clotting.
I have a Coagucheck machine, ordered by the doctor, whereas I can check my blood at home, I do so every 7 to 10 days, and I know exactly where I am with my blood thickness. I am on Medicare and the machine is paid for and should be covered by any insurance, but your doc has to order it. We used to travel a lot in our RV, which is now sold, and he had suggested the machine. I let my blood get a little thick last April and had a small clot passing, so the my blood should stay between 2 and 3 when I check it.
You are exactly my daughters age, and thank God she was checked when mine was discovered, and did not get the bad gene, so therefore don't have to worry about my grandkids either.
My dear, you can't take it lightly, and I would check on some of these docs you've been seeing. Swelling of the legs is a sure indication that clots are forming, they start in the leg and work their way up to chest. I feel bad for you to have to go through this at such a young age.
Be very careful. Are you bruising much, if you're on coumadin you will. My legs are such a mess from leakage of blood through my veins that my ankles are black from dead blood, it's a hard thing to swallow. To me it turns out to be coumadin or probably croak from a clot in my chest. I'm a small person physically so am affected by medications. I have never heard of anyone with FVL not on a blood thinner.
Keep in touch please, I'm here to talk.
Hugs
I did finally get referred to a hematologist to see if he felt there was a need for ongoing anticoagulant. He put me on Eliquis. I haven't taken a dose yet (will start today), but I am not liking all of the side effects that I am reading about. The one page that I found had a lot of people saying that they were experiencing extreme fatigue, swelling, and joint pain. It supposedly gets better after 4 weeks (but some refused to wait that long because it was so bad). I still have some research to do (and will probably make a 2nd post here to ask), but I did not see one person posting that they took it and all was fine. This kind of scares me, but I suppose I will give it a try for a bit.