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Factor V Leiden: A Quiet Potentially Dangerous Genetic Surprise

By Jan J. Colosimo
 
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At a time when heart disease is the No. 1 all time hit for women – and not in a good way – it's critical to know all of your risk factors, including a potential blood clotting disorder called factor V Leiden.

Ever heard of factor V Leiden? Probably not. The condition is the most common inherited thrombophilia (clotting disorder), and affects mostly young women, although it can affect all ages.

Depending on your “recessive” or “dominant” gene, this can affect up to 80 in 1,000. If you have this genetic feature, you can take precautions that can significantly affect your health.

Women who take birth control (most are hormone based)– or hormone replacement therapy (HRT), people who travel by plane or car and women who plan on getting pregnant should assess their risk factors.

A simple blood test is used in diagnosing the genetic disorder, and can be ordered by your doctor.

What if my doctor thinks it is insignificant to ask? Having worked in healthcare over 30 years, I’m surprised when otherwise well trained primary doctors are unaware of factor V Leiden, and the potential for adverse events in otherwise well young women. Speak up for yourself. This is one of those things you may otherwise not learn about – until it is too late. And if you test positive for recessive or dominant gene – get your sisters, daughters, mother to get tested as well.

A “healthy” sister discovered factor V Leiden after a stroke left her partially blind. She insisted her siblings (and mom) get tested. Five of her siblings and my mom tested positive, although the recessive and dominant profiles differed. My teen daughter tested – positive. With this information, we all get to make smarter decisions about birth control choices and HRT choices. We also give important medical information to our doctors that can affect our healthcare outcomes ahead!

For more information, visit www.fvleiden.org/ and ghr.nlm.nih.gov/

* Info links are not endorsed by nor in sponsorship with author.

Add a Comment9 Comments

EmpowHER Guest
Anonymous

In November 2010 I ended up with a massive blood clot to my lung . It was a series of 23clots in one vein. I also ended up as a result of the PE contracting Pneumonia, and a Pulmonary Infarction of 65percent. I was not told at the time I have Factor V, I was told it was strictly due to birth control. However when I ended up Pregnant with my daughter in July of 2011, the OBGYN ended up getting all my tests results from my Primary Care Dr, then ended up running tests of her own and it came back I had one copy of the gene. I was only 29 yrs old at the time. I found out at this time, not only can Factor V cause clotting disorders, but it increases your risk for Preclampsia and Helpp Syndrome if you become pregnant. I had Helpp Syndrome with my first daughter, and ended up with Preclampsia with my second daughter. I have been advised to not have anymore children. I will have both of my daughters tested for this Mutation. I also have a twin sister, who ended up with Preclampsia with her son, I told her to get herself tests and it came back she also had a copy of the gene. You maybe at higher risk to get clots of you have two copies of the gene, but remember you can still get clots even if you have just one copy. I had to be on lovenox during my last pregnancy, and I ended up with clots in the placenta anyways. So, now I will be on blood thinners for the rest of my life and I am only 30yrs old.

I believe that all women who end up on birth control or who are pregnant should be tests for this disorder. It’s becoming more common and if women are tested prior to being placed on birth control it would save some lives I’m sure.

March 30, 2012 - 9:39pm
Reruho

Oh no, my GYN was more than willing to run the test. He knew the dangers involved but did not tell me them. In fact, my Primary was quite impressed that he ran the whole panel of clotting disorders (there 6-7 of them).

One of the reasons testing is so controverial is the insurance companies use this as a reason for denial. Another reason it is so controversial is they (the medical community) have not found it to be beneficial to have family members tested. I felt that it was important for my 24 year old daughter to know if she could or could not use BCPs. I believe in prevention.

90% of us with one gene never clot. If I was homozeguous (2 genes), it would be a matter of when. But knowing has saved me. When I started complaining about some gyn issues this summer, the first thing everyone was suggesting was HRT. Once I said no and why, they understood perfectly. Had I not spoke up, I would have had a prescription in moments.

When I had my son tested, he was about 8. We saw a pediatric hemo and he told me I was on the right track educating my children about the signs and common prevention methods. I told his doctor I realize this might prevent him from going into the military or doing some other things but I felt it was more important to know and pretect his health. A clot can kill but it also can create a lifetime of pain and suffering from the health issues it creates as it damages your body.

Again, I want to thank you for talking about this, it is often overlooked and downplayed. It certainly has caused enough pain and suffering in my family.
Reta

October 14, 2009 - 11:31am
Reruho

Oh no, my GYN was more than willing to run the test. He knew the dangers involved but did not tell me them. In fact, my Primary was quite impressed that he ran the whole panel of clotting disorders (there 6-7 of them).

One of the reasons testing is so controverial is the insurance companies use this as a reason for denial. Another reason it is so controversial is they (the medical community) have not found it to be beneficial to have family members tested. I felt that it was important for my 24 year old daughter to know if she could or could not use BCPs. I believe in prevention.

90% of us with one gene never clot. If I was homozeguous (2 genes), it would be a matter of when. But knowing has saved me. When I started complaining about some gyn issues this summer, the first thing everyone was suggesting was HRT. Once I said no and why, they understood perfectly. Had I not spoke up, I would have had a prescription in moments.

When I had my son tested, he was about 8. We saw a pediatric hemo and he told me I was on the right track educating my children about the signs and common prevention methods. I told his doctor I realize this might prevent him from going into the military or doing some other things but I felt it was more important to know and pretect his health. A clot can kill but it also can create a lifetime of pain and suffering from the health issues it creates as it damages your body.

Again, I want to thank you for talking about this, it is often overlooked and downplayed. It certainly has caused enough pain and suffering in my family.
Reta

October 14, 2009 - 11:31am
Diane Porter

Reruho,

I want to commend you for getting tested. I cannot believe your gynecologist had this attitude about giving you this test, especially with your family history. I am also glad you have had your children tested. I'm sorry if it's controversial, I can't think why any parent would not want to know this about their child, since it's something that could affect them at any time in their lives. You are doing the right thing by teaching them what they need to know. I'm not sure how it's any different than, say, a parent teaching their diabetic child what to watch for in terms of their blood sugar.

So a pat on the back to you. Thanks so much for writing.

October 13, 2009 - 8:41am
Reruho

Thank you for writing about this.

I am heterozygous FVL (one gene and the lower risk). My mother's doctor suggested I get tested 4 years ago. I was being treat by a GYN for excessive uterine bleeding with a 3rd generation BCP. He flipped out when I asked him to run the test, he never said why. When the results came back, his only comment was don't take BCPs ever again. I found out these BCPs increased my risk 39 fold. In simple terms my risk when from 1 in 122,000 to 1 in 250, not good odds.

While this increases my chance of a clot, it is the fact that my maternal grandmother, mother and maternal aunt have all clotted that increases my risk factor more than the FVL. I have had my children tested (very controversal at this time), both are heterozygous (one gene). I am protecting them by teaching the signs of a clot and the importance of exercise and staying hydrated.

October 11, 2009 - 7:27pm
charista

How about more articles about coumdain - and how to work with being put on it for extended period of time - i.e. rest of your life due to hole in heart - and resulting stroke ? thanks! Are there any alaternatives =- other than surgery to repair hole ?

April 22, 2009 - 2:39pm
Diane Porter (reply to charista)

Charista,

Great suggestion. I would love to research some of this for you. Can you answer some questions for me and tell me more about your condition?

How old are you? I am assuming the heart problem is congenital? Exactly where in your heart is the hole?

How long ago was the stroke? Did you make a full recovery?

Is the coumadin causing you problems or negative side effects?

Has a doctor recommended surgery? Or recommended against it? Why are you hesitant to have the surgery?

Please tell me more, and let me see what kind of information I can find for you.

October 13, 2009 - 8:37am
EmpowHER Guest
Anonymous

This article really is terrific - informative yet easy to understand.

Very valuable information to be shared !

April 16, 2009 - 6:24pm
Jan J. Colosimo (reply to Anonymous)

well, bless your heart, dear....

April 17, 2009 - 3:26pm
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