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  • Does anyone out there have MTHFR or factor v leiden or von willebrands?

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    Old 05-01-2007, 12:48 PM   #1
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    Does anyone out there have MTHFR or factor v leiden or von willebrands?

    I have all three. I have a mild form of Von Willebrands type 1. I am heterozygous for Factor V Leiden. Not sure about MTHFR my daughter is homozygous so I must be hetero or ****. I have a hematology appointment in a week so I can have the test for MTHFR. I would just like to know what your experience has been. I have not had any major issues just a thrombophlebitis after an IV which may or may not be related. Any information would be greatly appreciated.

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    Old 05-01-2007, 07:30 PM   #2
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    Re: Does anyone out there have MTHFR or factor v leiden or von willebrands?

    I'm probably not the right person to post to you about Factor V Leiden, as I was just diagnosed a week ago. I was admitted to the hospital with pulmonary emboli and pleural effusion so they checked for any clotting disorders since my only risk factor was that I was a smoker. It came back positive.

    Right now I'm still on the Lovenox injections and 15 mg's of Coumadin (INR is still only 1.3)

    I'm in the process of getting the referral to a hematologist. This is all very new to me, too. I hope someone with experience can answer your questions.

    Old 05-17-2007, 05:34 PM   #3
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    Smile Re: Does anyone out there have MTHFR or factor v leiden or von willebrands?


    I was diagnosed with Factor V Leiden and anticardiolipin IgM antibody in 2002. I will be on Coumadin for the rest of my life, which means blood tests every 2 weeks for me. I never knew I had Factor V Leiden, until in 2002, I had a DVT. I went to a hematologist who then did extensive blood testing to discover about the Factor V Leiden. I then told my aunts and they were also tested, some had it others didn't. My daughter was tested at age 12 and discovered that she also has Factor V Leiden. At least now I can help her to try not to have blood clots.

    If you have any questions, I will try very hard to answer them for you.


    Old 05-27-2007, 05:07 PM   #4
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    Re: Does anyone out there have MTHFR or factor v leiden or von willebrands?

    I am recently diagnosed with heterozygous Factor V Leiden and tested positive for the lupus anticoagulant antibody. I am young (mid 30s) and in very good physical shape -- never had issues with DVTs, although I have traveled extensively for work taking long coast-to-coast flights, and have taken birth control pills off & on for years. The doctors say because I'm a non-smoker & have kept an active lifestyle, I've probably kept myself from having more serious issues until now. A little over a month ago I had a mild TIA (mini-stroke) which prompted my testing, and have been in & out of doctor's offices getting tests done & making sure the right course of treatment has been selected. I was very lucky, I have no long-lasting effects from my episode, but it was a big shock, to say the least.

    There is not a ton of information out there for FVL patients because the diagnosis is relatively new (testing has only been available since 1994). I am lucky to have several medical professionals in my family and circle of close friends to help me with gathering information, and I have done a lot of research since my episode a month ago. I will also be on Coumadin for life (or at least until a better drug comes along) and am currently in the midst of Lovenox shots to get my blood levels ready to take Coumadin.

    I'm more than happy to answer any questions you've got. From the looks of your profile, we're neighbors (I'm in Hoschton, GA).

    Old 06-09-2007, 05:48 PM   #5
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    Re: Does anyone out there have MTHFR or factor v leiden or von willebrands?

    Hi all,

    I was diagnosed with FV Leiden about 8 months ago. I am almost 36 years old and developed bilateral blood clots in both basilic veins in both arms last year. Prior to that i had a DVT after knee surgery back in 1986. FV leiden wasnt known back then, but atleast now i know why i had a clot when i was 15 years old.

    Anyways im on 10mg coumadin daily and have my PT checked every week for now. Occasionally i go up to 3.5 to 4.0 but usually am between 2.0 and 3.0. No other problems so far. Had both my sons tested. One has it the other doesnt. And we know he should avoid contact sports.

    Im glad there are forums like this that we can communicate and research. If anyone has any other info i would love to hear about it.


    Old 06-11-2007, 02:08 PM   #6
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    Re: Does anyone out there have MTHFR or factor v leiden or von willebrands?

    Hi Pattymary: I have vwd (vonwillebrands) and have had it since I was a teenager. When ever I had surgeries I bleed a lot, and had to have transfusions, so once I was dx they started to give me coagulant meds pre op to help the bleeding. I don't really bruise that easily, but I do bleed a lot if I cut myself or have any kind of invasive procedure. I've had a lot of surgeries so they just give me DDAVP or Cryopercipitate prior to the surgery. If I didn't get these meds I always had to have at least 6 or more transfusions/units because of the bleeding and drop in blood count. I have a dr who feels I should wear a med id bracelet, but I still haven't gotten around to it. The vwd seems to only affect me for surgeries, so I don't think about it much. Oh it did make mens real bad, but I don't have those anymore.

    Good luck...

    Old 06-27-2007, 05:40 AM   #7
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    Re: Does anyone out there have MTHFR or factor v leiden or von willebrands?

    funny , i have van willian brands, and mthfr, ANDDD ET, and in the summer i guess you can say i seem to get poly cemovera ( i killed that spelling i know)
    have no i dea why
    my parents are both carriers including my sister for mthfr but none of them have the hystine levels ( or hwat ever that is to make it a concern)
    everything else i seemed to have started my own strand on , in a loving manner my doctor just says i am special.. whatever i take hydroxyurea for the ET and asprin and everything else is just sidelined ... i go for a cbc everymmonth and if numbers come back bad i go sooner or geta good ol flabotomy (i know i should use spell check) anywho life is what you make it !
    i Go to the gym everyday for 2 hours and live life normal < sure i have that lil panic attack here and there when i get the slightest pain in my head or chest (thinking is this it iam about to have a anurism or embleism ) but i count to 10 and if i dont pass out by time i am done i figure i am just wiggin out and go on with my day , see i am 28 and have 3 small kids , i have a lot of life ahead and cant consume my self with it . sooo goood luck to all
    hopefully my doctor said when i hit menopause this conditon could reverse it self , at 28 thats not to long off ? ahhh time will tell
    have a nice day ( i know i ranted about nuthin )

    Old 06-27-2007, 05:00 PM   #8
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    Smile Re: Does anyone out there have MTHFR or factor v leiden or von willebrands?

    I found out about a month ago that I am Factor V Leiden Homozygous. I was preparing for ankle surgery, which would require a cast, and was tested. My grandfather and father, each have it, so we knew there could be a risk. At the time I found out, I was on birth control pills, which I have since quit. I'm currently taking lovenox injections, due to the cast. I haven't been able to see a hematologist yet, but my GYN suggested that I might have to take coumadin for the rest of my life. To my knowledge, I have never had a blood clot. Is this really likely that I automatically have to take coumadin, even though I've never had a clot? It would probably require a career change if that is the case, so I hope not.

    Old 07-13-2007, 07:40 PM   #9
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    Re: Does anyone out there have MTHFR or factor v leiden or von willebrands?

    I probably have vWD type 2a, but I have not been tested yet as I don't have insurance. I have never had surgery and never had dental work, so besides my AF and afterbirth bleeding there is not much to challenge it. My 17 month old son however is diagnosised with vWD type 2a.

    He has frequent infusions and bleeds. we are currently struggling with nosebleeds.

    Old 09-23-2007, 12:21 PM   #10
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    Re: Does anyone out there have MTHFR or factor v leiden or von willebrands?

    My husband is Factor V Leiden. Also, he has Polycythemia Vera. Do you have that? Thanks

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