AHRQ is a a good agency. I think the report really showed the need for more research to be done in regards to this topic.

I'm a firm believer that knowing whether a person has a genetic clotting disorder (or any other genetic condition for that fact) is beneficial to long term health. My father died of a PE back in the 80's before FVL was known. Previous to that he had a DVT. If we had known he had a FVL and if they placed him on long-term anticoagulation, would it have made a difference; I think so, but that's a lot of if's and even today (20 years later), doctors are not always properly diagnosing a DVT/PE nor treating it effectively.

Of course there is not right or wrong answer on whether to test someone for a genetic disorder. It's sort of a dual edged sword.
If diagnosed with a genetic disorder, it can affect eligibility for insurance (medical or health) in the future. Of course, medical insurance may not even pay for the testing to have it done (about $1500). This is an issue which is being worked on to resolve with the help of the folks down in Washington DC. Two years ago, President Bush signed the Genetic Information Non-Discrimination Act (GINA) which prevent employers from discriminating against employees who had genetic condition. The same type of action is being worked on for insurance companies.

It's a little murkey to me - are they saying there's not much benefit because knowing your FVL status doesn't prevent a clot? Because they don't prescribe warfarin just because of your FVL status, that you have to have DVT/PE first?
There's no doubt, had the science been there, your dad would have been on warfarin long term if he had his dvt and tested positive FVL. Had they then tested YOU, because of your dad's status, You turned out to be FVLx2 but had not yet had your first dvt...could you have prevented it from ever happening? The answer I get from this article is "no evidence".
But I would want the female members of my family to be tested at least, since women with FVL are at particular risk with birth control, pregnancy or hormone replacement therapy.
Anyway, I find the whole genetic testing thing fascinating.

"The presence of one or two FVL alleles was found to be predictive of recurrent VTE for individuals and their family members (compared with VTE patients without the FVL mutation)."

To me, even though they didn't have enough evidence on the prothombin G20210A mutation that still reads that testing for FVL is useful as it gives an indication on the risk for VTE.

Like LauraLu, I am of the opinion that it would be useful for preventative treatment, though I think also for men i.e. for surgery, long flights, periods of immobility.

FVL also greatly increases the risk of miscarriage late into the pregnancy. Another heart ache that could be somewhat avoided by taking preventative measures...

The problem with putting everyone with a FVL gene (5% of the population?) on lifelong anticoagulation is that there will be a huge increase in bleeding complications. So I wonder if there is any research (and this is probably quite an insensitive question, so please excuse it purely as a mathematical wondering) into how many bleeding complications there would be as opposed to how many people they would spare from having clots?

LauraLu,

I concur with you. Thus the reason my kids were tested. Even though we sort of knew they would be heterozygous for FVL we want to rule out any other genetic disorders (all the cousins have Factor 8 Hemophilia). Turns out both my kids in addition to FVL are MTHFR homozygous also and my son's ATIII levels are elevated; though not necessarily enough to conclude he has ATIII deficiency.

You also hit the head of the nail in regards to what they are saying; at least in their short term research - knowing someone has a clotting disorder doesn't prevent the clot and since the person has not had a clotting episode, the use of long-term warfarin/coumadin treatment is not warranted. So, in the case of this particular study, what's the point of testing people "just in case". Well we as survivor know that answer especially since it effects at least one member of our own family if not more and of course our children.

This is where I think preventative measures "are warranted". Whether that be Vitamin E (though we found out more research is needed in that area too), or some other preventative treatment just to ensure that the person with a known risk factor doesn't become a statistic.

Dr. Moll more or less cover the whole topic at the following link:

http://fvleiden.org/ask/40.html

And of course so does NATT's "Genetics of Thrombophilia" brochure:

http://www.stoptheclot.org/natt_publications/genetics_thrombo.pdf

Hopefully in the future, more studies will document the importance of knowing genetic conditions without placing a financial burden on families (whether that be medical coverage, payment of tests, or life insurance).

I have a strong family history of AT III deficiency (my dad and his 4 siblings all have AT III deficiency in addition to having had at least DVT, if not PE as well). My brother has had DVT/PE, as have I. My youngest brother is also AT III deficient, and as such is highly likely to develop clots too.

Is it worth him having preventative treatment? When does risk of clotting out-weigh risk of bleeding?

I admit, I didn't read the article, but plan to.
I'm the first one in my family to have DVT (my dad joined ranks earlier this year with superficial ankle clots). After I tested hetero FVL, we tested my sis and mom. They both came back positive, and we all came off HRT. I believe this was HUGELY beneficial in that it hopefully keeps us from clotting again due to that catalyst. My mom had several surgeries in the last couple years and it's allowed her surgeons to keep her anticoagulation monitored while she's been getting on her feet again.
In short, we'd MUCH rather know, so we can make better lifestyle choices to discourage clotting.

After my DVT/PE, the dr. had me tested. I had FLV and he suggested my siblings get tested. One had it and one didn't. The one that had it went off birth control. Would she have had a clot? Who knows? But without testing, she would have been putting herself at a much greater risk by continuing birth control.

I would say there is another benefit to knowing if you're positive for genetic factors or not: faster diagnosis if you do clot. I know a problem a lot of us with PEs have had is that the doctors didn't believe we might have clots because our symptoms weren't "traditional." If I knew for sure that I had a genetic factor for clotting and suddenly wound up with shortness-of-breath or leg pain, I would feel much more comfortable *insisting* that the doctors do a CT scan or ultrasound. If you're already at risk, there is no point messing around with maybe-maybe not.

My son had a DVT and the whole family was tested. He has the FVL and MTHRF Homozy. while my dtr & I have just FVL. Altho he had a clot that extended from his knee to his heart he was on coumadin just 1 yr. He subsequently had 2 more clots & is on it indefinitely. But, they did suggest my dtr and I take baby aspirin everyday or regular dose aspirin every other day. Also, I had toxemia 4 times with pregnancies. FVL places women at high risk for toxemia. Last pregnancy I was told to take aspirin every day - but still ended up with the toxemia. I heard they are now suggesting heparin during pregnancy for women with FVL. So - it is good to know.

I can never quite figure out the probability of my children having the mutation but if I understand things correctly, they have at least the hetero FVL since I am homozygous for it? Since I am double copied than that also means that my parents have at least one copy of FVL. My mom has clotted and was tested as hetero FVL. With my children being young, I am hoping that I can educate them about their risks without having them get the testing and be subjected to the insurance companies discrimination currently, SInce this happened to me, I have been denied a life insurance policy which really upsets me since I can not provide for my loved ones the way I would like to. My mom is homozygous for MFTHR and has the increased ATIII levels. I am double heterozygous for MFTHR (apparently there is a difference). I don't know how this might affect my kids. I am curious whether these gene mutations indicate a higher probability for other genetic problems not related to thrombophilia. My daughter has a congenital hearing loss and other health problems. My son also has some disorders that are thought to have a genetic component, I was just curious of anyone knows.

Yes, if you have two copies of the mutated FV gene, then your children have to have one copy (and be heterozygous FVL). If their father is heterozygous, there would be a possibility of your kids being homozygous. If their father, like you, is also homozygous, then your kids would definitely be homozygous.

Since YOU have 2 copies of the mutated gene, YOUR parents have to at least each be heterozygous. And your brothers and sisters would also potentially be either heterozygous, homozygous, or lucky.

But remember, there are plenty of people who clot and have no genetic reasons, so in my opinion, everyone should know the symptoms of DVT/PE, and how to take steps to prevent it, regardless.

My phlebotomists husband had chest pains, went to the ER, but they didn't see any clots. However, because his father and grandfather both died of PE, he was tested and turns out he is FVL homozygous. BUT because he didn't have a definite clot, he is not on warfarin (can you believe it?). So even knowing his risk factors, they still wait for a clotting event instead of using warfarin as a preventive measure.