As far as i understand, there is no reason to repeat genetic testing. Since FVL is genetic, it's not subject to change. When you see your doc, be sure to ask if you have one copy or two. I have two copies of the gene but that is fairly rare. Here's a link to more info. about it. https://ghr.nlm.nih.gov/condition/factor-v-leiden-thrombophilia#diagnosis

Even though I have two copies, I didn't have a clots till I was 61, and that was after a very long ( 13 hour) drive.

Hope all goes well with the doc visit.

Thank you for your reply. I have the heterozygous copy. I read your link and it was enlightening. My doc comes back on Monday. I saw my results on the lab portal. Got a little stressed until I read more. Stress has been a bigger factor than I thought. Wow. Anxiety can really mess with you. I had no idea until I went through it. This forum has been a blessing.

I looked into V Leiden testing and everything I read indicated you have to be off the anticoagulants before testing but it didn't say how long. I want to know if I have the factor if just to pass down to my kids and grandkids. Forewarned is forearmed.

Hi soola74,

FVL can be tested for while on anticoagulants. You're right though that other hypercoaguable conditions like protein S and protein C can't be tested while on anticoagulants. Here's a brief article abohttp://www.mayoclinic.org/diseases-conditions/factor-v-leiden/basics/tests-diagnosis/CON-20032637ut the subject.

It sounded as if the C test comes before the V leiden? So if they can't do the C until I'm off the anticoagulants, then I have to put off the other ?

I had the genetic test for FVl without the preliminary activated C resistance test. I guess it depends on the protocol of the health care system you're in.

I had a strong family history of clotting, so it was decided to test for the things that could indicate higher clotting risk. If those came back clear, then I would have the other tests that have to be done once after I came off anticoagulants. When I came back homozygous fvl, it was recommended that I stay on the anticoags "indefinitely".

Hope this helps clarify things.

thanks corvid. I am going to ask for the test when I see the doctor on Wednesday. I want to stay one jump ahead of the game at all times. I don't mind being on a thinner for the rest of my life, although I'd prefer it was xarelto instead of injections - which may come at some point when things aren't as epic as they seem to be right now. I also want my adult kids to know that this could be an issue for them. I don't want to freak them out, but if this is something they should be tested for, maybe forewarned is forearmed, right?

Having FVl is an issue you need to discuss with your family. My husband has it and lost a cousin (without warning, during his sleep, when he was in his 20s) and a nephew (idiot brother-in-law insisted on circumcision that killed the 3 day old). You need to be on anticoagulants; the thing to think about is that many of them, pretty much anything but Coumadin, don't have antidotes. This means that if injured you can actually bleed to death while doctors wait for the drugs to leave your system.