Factor V Leiden

BASIC FACTS

  • Factor V Leiden is an inherited blood clotting disorder. It is a specific gene mutation that can result in thrombophilia (an abnormality of blood coagulation that increases the risks of blood clots forming in blood vessels).
  • People who are heterozygous (carry one gene mutation) or homozygous (carry two gene mutations) are at higher risk of developing a DVT (deep vein thrombosis).
  • Factor V Leiden is the most common clotting disorder. 3-8% of Caucasians in North America carry the gene mutation.
  • Factor V Leiden can cause miscarriages. Pregnant women with Factor V are considered high risk and need to be on a course of low molecular heparin or it’s derivative, Enoxaparin Sodium (generic name is Lovenox), during pregnancy.

WHAT ISN’T WIDELY DISCUSSED/KNOWN

  • Factor V Leiden along with other blood clotting disorders has been DIRECTLY linked to Osteonecrosis/Avascular Necrosis.  There are several clinical papers I have included on this blog concerning this fact.
  • If you have Factor V you should NEVER take steroids. Even a 20 day use of high dose Prednisone can cause ON/AVN.
  • If you have Factor V NEVER take drugs with estrogen, ie, the Pill.
  • If you have Factor V NEVER eat products that advertise themselves as containing phytoestrogen.

Note: The above are direct recommendations given to me during a meeting with Dr. Charles Glueck and are supported by his research.

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14 thoughts on “Factor V Leiden

  1. Thanks for taking the time and effort to put all this information together. Wading through all the articles on the internet, which all seem to say more or less the same thing, is a tedious and frustrating endeavor.

    After being diagnosed with idiopathic AVN in my shoulder by my orthopedic surgeon, one of my first thoughts was regarding birth control pills and whether I could be doing further damage or could be increasing the risk of further necrosis by using them. However, after asking the ortho doc, my primary care physician, and my rheumatologist, I never came up with an answer. Glad to see someone is thinking about that!

    I am still waiting on some genetic test results (for a mutation of the collagen 2A1 gene) and have had some blood tests done (though I don’t know which ones) which came up “normal.” My surgery for total shoulder replacement is 8/20. Once that is out of the way, I am going to start pushing for more tests based on your recommendations listed on this site.

    Thanks again and take care!

    • Joanna,
      I’m so glad you came across my blog! One of my main goals is to spread the awareness of clotting disorders and ON (AVN). Like you I was told my ON was idiopathic, but I didn’t believe it. I knew something was going on in my body. So few doctors know about AVN in the first place let alone that their is a relationship between clotting disorders and AVN. When I found out I had Factor V my hematologist never told me about the risks entailed with having a clotting disorder.
      Before you get more tests done, I would get off the pill as soon as possible (if you haven’t done so already) until you know if you have a clotting disorder or not.
      Good luck with your surgery on August 20th. Please share with me how your surgery goes and what you find out after having more blood tests.
      Thanks again for checking out my blog! Spread the word to other AVN sufferers, I want to share the knowledge!!!

  2. Pingback: The importance of being tested for mutations in the MTHFR gene | Osteonecrosis (Avascular Necrosis)

  3. Pingback: Spreading Awareness: Educating Ourselves and Each Other | Osteonecrosis (Avascular Necrosis)

  4. I was just tested for Fact V Leiden and am heterozygous. Due to AVN I had 3 joints replaced (2 hips and right shoulder) and now my left shoulder has been diagnosed. Do you know if Dr. Glueck recommends lovenox for people in my situation?

    • Jo Anne,
      Most DEFINITELY email him. Explain your situation.
      What stage is your shoulder at? Do you know of any other reason, than FVL, as to why you developed AVN?
      I was treated with Lovenox and as I said I’ve had 100% improvement, but I was in the disease’s early stages and had no other risk factors other than clotting disorders.
      It won’t hurt to contact Dr. Glueck. He may want you to be tested for other anti coagulation disorders. I am taking Coumadin for life now. As I found out I am more than just heterozygous for FVL.
      Let me know if he gets back to you.
      Cassandra

      • Cassandra,
        Thanks for the encouragement. I have already had a lot of blood tests done so I will see if I can email my results and set up a consult with him. I believe my AVN is from cordicosteriods taken when I had cancer. The shocker is that I didn’t take them very long or very often.
        Jo Anne

  5. Hello I have FVL, I am not sure hetero or homo, but I have had 2 dvt’s and 1 PE. However, I am adrenal insufficient and must take Hydrocortisone and Dexamethasone daily to sustain life. How much higher are my risks due to this? Thank you, Sheila Dahl

    • Sheila,

      My father has clotting factors and Addison’s disease and has been taking steroids for over 40 years and has never developed osteonecrosis. In your case the benefits outweigh the risks, you need to take steroids. I usually encourage those with FVL not to take steroids if at all possible, but that isn’t always an option. There isn’t statistical data out there stating exactly what percent of people with FVL, who have taken steroids, develop osteonecrosis. Steroids are one of the leading causes of the disease, but that does not mean that everyone with FVL who takes steroids will develop osteonecrosis. I wish there was research out there showing why some people with clotting disorders who take steroids develop AVN and why some don’t. There just isn’t that data. You have to do what is best for your body. If you start to develop joint pain and you are concerned, talk to your doctor. In the meantime don’t feel like you are living with a ticking time bomb, because most probably you’re not. There are no guarantees in life, but unless you feel like your body is trying to tell you something don’t worry about it. Don’t live your life wondering what ‘might’ happen.
      Cassandra

  6. Thank you so much for the reply. My endo today made me very scared about this. IDK she would as there is nothing I can do. But she did. I appreciate the feedback.

  7. HI, i have Heterozygous fvl, and am on Coumadin. I had a PE a few years ago. My Dr’s said my test results for the fvl were just slightly abnormal, not a huge difference than a person w/o it. 2 questions.1. do you think I need to be on Coumadin for life? 2nd. I have been prescribed steroids for a shoulder issue I had. I wanted to do my due diligence before starting and steroids. I also compete in amateur bodybuilding completions and would want to use certain steroids like testosterone, and anavar for the contest prep. I would also have to take a PCT (post cycle therapy) after the cycle is over so that I can get my testosterone levels back to baseline levels. I know Coumadin and steroids can increase the INR levels and make the Coumadin almost 80% more potent, so couldn’t I just take 80% less Coumadin to offset that problem? please let me know what you think, and thank you for the help and article!
    -Mike

  8. Thank you for sharing this information, I have DVTs, had them since I was 9 years old; an in 2006 I was told I had Factor V Leiden, a long with leg ulcers. My mother has Factor V Leiden as well, an was diagnosed with Breast Cancer, so its really important for her to know facts like you post!! She’s the one who found this post, thank you soooo much for given us with Factor V this knoeledge!!!!

  9. Just found your website and am hoping that it can give me a better insight into having surgery with FVL. I was diagnosed 8 yrs ago with FVL and am homozygous. Now with AVN I am in need of THR and concerned about the risk involved. I have been on Coumadin ever since I was diagnosed. Any info would be appreciated!

    • I have FVL and have had many surgeries, including 3 joint replacements for ON. Surgery has never not been done because of the FVL, but I’ve always had to do a lovenox bridge and once, I recall that a spinal was NOT done and I think it was for a clotting reason. Ever since diagnosis with FVL, I’ve been on coumadin.

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