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Factor II mutation
Started by SueG
Posted: December 31, 2007 at 20:33
Hello all - does anyone know anything about Factor II gene mutation? I had appointment with haematologist today who thinks that this is why I've had DVT and two PE's in the last three years. So warfarin forever.... I kind of expected that, but would be interested to know if anyone else has heard of this? Also possible links to hormone fluctuations - odd that this suddenly caused problems when I hit menopause (I'm now 49) As always thanks for any comments

Sue
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Re: Factor II mutation
Reply #1 by Sharon
Posted: January 1, 2008 at 07:11
Sue--

This is one mutation I have not read much about. However, I have read that many of the clotting disorders we have carried for life do kick up at menopause, especially from hormone replacement therapy. I am also 49 and was on estrogen for 2 years when I got this DVT. End of the estrogen the day they discovered the DVT! My husband was terrified (I'm not sure if it was the DVT or no more hormones that scared him most!) LOL. Let us know about this one as you learn about it yourself. If I know Dero, he will have a few links for you by tomorrow! Take care and Happy New Year!
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Re: Factor II mutation
Reply #2 by Sue
Posted: January 1, 2008 at 11:12
Thanks Sharon.... and for your other posts is it you that has had issues with your thyroid also? Reason I ask about hormone link is that I have been told it would be good idea for my daughter to be tested to make informed choices re contraception, at pregnancy etc (she's 21)probably avoiding estrogen based products. I have never taken HRT - first clot at 46 so they would never let me, but I have read that you can be estrogen dominant all by yourself at this time. On that basis I asked the haematologist about a link his thoughts were that it couldn't be excluded but little research exists to support that theory. During this same time my thyroid became underactive and all symptoms rolled into one- grrrr. Anyway the factor II discovery is an answer and I accept the need for long-term warfarin treatment. Best Wishes to all for a Happy and Healthier New Year Sue
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Re: Factor II mutation
Reply #3 by Sharon
Posted: January 2, 2008 at 06:18
Yes, it is me that also has the thyroid issues. Nodules as well as hypothyroid--was hyper when younger.

I have Factor V Leiden and Antiphospholipid syndrome. I never should have taken BC, fertility drugs, smoked or taken HRT--did all of it. Never should have been able to have kids w/ these disorders either, and tho I lost 2, I have 2 beautiful kids in their 20's, son Chris 26 and daughter Dena 23. Quit smoking 3 years ago after 30 years of it.

I hate to hear your daughter is having to deal w/ this so young...course I just didn't know I was--knowing now has explained every major health problem in my life. Maybe it is better she can do more prevention now and not be where we are later. Take care.
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Re: Factor II mutation
Reply #4 by dero
Posted: January 2, 2008 at 20:51
Oops, sleeping at the wheel, or lack of sleep.
Here is a link with other links re:. factor II mutation.
http://lifeafterdvt.forumotion.com/what-is-factor-ii-mutation-f24/factor-ii-mutation-t31.htm#46
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Re: Factor II mutation
Reply #5 by Sue
Posted: January 2, 2008 at 22:49
Thank you dero..... to some extent I'm relieved by a diagnosis - an outcome of sorts! the haematologist told me it was one of the more common inherited problems but I'd never heard of it amongst all the others which are often listed on these pages. The trick now is to decide on the extent of family testing & awareness but better to know I suppose than not.
thanks

Sue
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Re: Factor II mutation
Reply #6 by jenn
Posted: November 21, 2009 at 20:00
I have factor 11 mutation and almost died because of it , I was diagnosed with it after I got a really bad clot , I was only 18.
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Re: Factor II mutation
Reply #7 by Tom in Connecticut
Posted: November 24, 2009 at 15:27
Here is some more information about Factor II Mutation (also known as prothrombin 20210 mutation:

http://www.fvleiden.org/ask/11.html

That particular Q&A is written by one of the best blood clot disorder specialist in the U.S.

Likewise, here is an article written regarding Factor II mutation:
http://circ.ahajournals.org/cgi/content/full/110/3/e15
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Re: Factor II mutation
Reply #8 by Nessa
Posted: June 6, 2011 at 11:29
I was 20 years old, had a 1 week old baby and in
ICU because they didn't understand why or how
I had blood clots in my head. After getting out
of the hospital 2 weeks later I found out I had
factor 2. I am going on 6 years now of a high
dose blood thinner and still really don't know
much about this disease.
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Re: Factor II mutation
Reply #9 by Judy
Posted: June 6, 2011 at 22:35
I was diagnosed with Factor II this year following a first DVT last year. I'm 40. Not got any of the issues listed above, but did have really bad ulcerative colitus flare up at the time.
I've been told that I don't need to be on warfarin for life, unless I get another DVT. Bit worried as going in for major surgery this year, but Haematologist has written to the surgeon saying I should have clexane for six weeks after surgery.
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Re: Factor II mutation
Reply #10 by Joyce
Posted: August 18, 2011 at 21:47
Was diagnosed in 2004 after a shower of blood clots went through my heart to my lungs. At that time, I was 51 and had no idea my family tree contained this genetic problem. If you are not exhibiting any symptoms, most doctors say to do nothing other than to eliminate other risks factors: obesity, smoking, alcohol, and even your stress level. If you have had a DVT or PE, you need to be on blood thinner. If going for surgery, which I have, they will take you off Coumadin and put you on Lovenox shots prior to surgery and then stopp the Lovenox a couple days or a day prior to surgery. Then, immediately after, you resume both: Coumadin pills and Lovenox shots until your INR on Coumadin reaches a therapeutic level.

Unfortunately, by the time this genetic factor was discovered in me, the chronic PEs that I suffered through, damaged the arteries from my heart to my lungs causing them to narrow which cause high pressure in those arteries, resulting in Pulmonary Arterial Hypertension (PAH). This is not high blood pressure but rather high pressure in the arteries going from the heart to the lungs. Cause right sided congestive heart failure. It's truly a miracle that I'm alive. PAH has no none cure...yet. It's a degenerative lung disease. All this, because I didn't know about the Factor II until after the blood clots had done their damage. Good news, I'm still here and its been 7 years since diagnosis. I am on a drug called Tracleer (or Bosetan) for the PAH, Coumadin, and Lasix. I'm also on supplemental oxgen, 24/7, due to the damage done to the lungs. I manage my health through eliminating the other risks factors mentioned, and pulmonary therapy (exercise program to strengthen lungs through a local PH center). I never smoked and I do not drink - so those were no problem to eliminate. I lost 45 lbs. which has helped my endurance level.

Need to get children, grandchildren tested so they can operate from a position of knowledge (proactive) rather than be reactive (after damage is done). One out of 2 of my grandchildren have the gene mutation, and one out of two sons have it. All five siblings have been tested and 3 out of 5 carry the mutated gene. The gene was passed down through my maternal grandmother and my mother. Knowledge is power.

Recommend getting any life insurance purchased before any blood disorder factors are determined...sure it puts one in a higher risk class. Other relatives in my family who had symptoms (DVTs) have gone through the testing and they are able to manage all with just blood thinner, which is a blessing.Go to someone knowledgeable in this area. Many MDs are not and will dismiss your symptoms. I went through several misdiagnosis(allergy testing, reflux, ashtma, high altitude sickness {lived in Colorado at the time) before this one (PAH)was determined. Had shortness of breath, prior DVT (flew alot for job- thought related to frequent flying), blacking out at higher altitudes, fatigue. Hope this information helps someone.
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Re: Factor II mutation
Reply #11 by Holli
Posted: August 19, 2011 at 18:59
My husband has the factor IV gene mutation and has had 2 strokes at the young age of 47 and 48. This mutation came from Holland and only a small persent of people have it. He is now a warfarin lifer.
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Re: Factor II mutation
Reply #12 by LawGrl
Posted: January 3, 2012 at 03:01
Does anyone have any information on pregnancy with Factor II? I was just diagnosed with the Factor II disorder and I am in my late 20's (with a history of a four foot long clot and 2 PE's this past summer). I was excited to have children in the next few years, but this disorder has me extremely scared about becoming pregnant. I have been researching this in my downtime, but I have not found a lot about Factor II and pregnancy. Help?
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