No, that's not always the case and in fact many people come off warfarin between 3-12 months after being on warfarin for an idiopathic or unprovoked clot. Tell your doc you'd like to be on it for 6 months and then test after that and see what she says.

As far as what the risk is specifically for being off for that time frame, I don't think anyone can say.

Try to relax, and just approach your doc with your thoughts.

That is so confusing: I've see studies where they recommend life-long anti-coagulant therapy after an unprovoked PE or distal DVT, others where they say women are less at risk and yet there are doctors who do not believe in life-long therapy at all.

From what I've read, the risk is significant enough for unprovoked PE and/or distal DVT, that it far outweighs the risk of bleeding.

I am really scared of having another PE as my dad died from a PE and mine were massive.

Well, some of the tests can be done while you're still on warfarin (although not all can). Perhaps you can compromise and have her do only the ones that are OK while on warfarin and wait on the others?

And, yeah, RMB is right that not everyone is a lifer after unprovoked PEs. Of course, you've got a family history, so that does make it look a little bit differently. If you're really concerned with what the internist is telling you, consider checking in with a hematologist.

Then to me it makes sense that they recommend warfarin for life. I've had two clotting events with no genetic clotting factors and am on warfarin for life. My brother got a DVT a couple of years later and his doc recommended he stay on warfarin long term due to now having a family history with my case.

You could forego the testing all together and just stay in warfarin. I think getting an opinion from a hematologist is a good idea.

Thanks Toss and rmb :)

When I saw the internist, in November, she did mention that the tests would be a little irrelevant, since I would be on Coumadins for life, either way.

I do have a reference to an hematologist, but still waiting for an appointment. I know that they already did some of the tests, including genetic testings that would be inconclusive, since they did it while I was on Coumadins. Since she called to schedule the appointment, I'm wondering if she got some of the results already?

I wanted the genetic testing for the sake of my sibblings and children.

Regardless of what info she has or what the tests would say, I'd still have a Hema weigh in on your case.

As far as your kids and siblings, I just want to share something. My mom is getting genetic testing to see if she has the BRCA1 and BRCA2 genes since she had breast cancer, and her mother had ovarian cancer. Plus we have other cancers in our families. My brother had cancer, and her sister had cancer. My dad had cancer, etc.

So she was flipping out about this genetic testing. Her oncologist recommended it but the paper work to submit for this testing she's having done on several genetic factors so the paper work she needs to complete for the testing is laborious, and you have to go way back in your family history to document the incidences of cancer and what type. She was just overwhelmed. I finally said to why are you having this testing done. She said she wanted to do it for us kids and her remaining siblings. I said to her, even if you have a cancer gene, there is nothing that I am going to do differently. I already go for my mamms, I go to regular OBGYN appts, I'm aware of ovarian cancer symptoms. I get colonoscopies every year due to my Ulcerative Colitis, which already puts me at a higher risk of colon cancer. So really what else can I do? I said if she wanted to the testing that was up to her, but to not feel like she has to do it for any of us, because me and my brothers really aren't going to care either way if we know it's genetic or not, since regardless, clearly our family has a propensity to get the Big C.

My point is your siblings and kids already know your family is prone to clotting. So this will be something they'll want to consider when having surgery, going on birth control pills, etc. They'll want to always include it in family health history, and discuss with their docs. They should do that regardless if you have a genetic clotting factor or not. Having a genetic clotting disorders doesn't mean you always have to go on warfarin right off the bat. It just depends on the disorder and other risk factors I suspect. I'm not saying don't do the testing, but really try not to put this kind of pressure on yourself at this point.

So definitely talk to a hema.

Honestly, I would be surprised if the doctor would want to take you off coumadin in order to run genetic testing after only 4 and a half months following massive PE. I don't think that's long enough for that level of clotting, and I suspect that won't be her plan anyway.

If for some reason it were, then I would just do as was mentioned above, say you want to stay on a bit longer first. I was kept on coumadin for 9 months after massive PE which were dissolved (initially the plan was for 12 months but I had issues on coumadin). Also if the internist already talked to you about staying on coumadin long-term, then I tend to think that the genetics being run is kind of moot as well. I have a family history of clotting besides what happened to me, but have been negative on all tests. Obviously, the family history is the more important factor for my sibling and kids than the fact that there are no "known" genetic clotting issues.

The appointment went really well. The doctor gave me the choice of quitting coumadins at 6 months or of continuing until I felt safe to stop, especially since it is not clear if there is a genetic or at least a familial tendency for clotting.

She still wants me to have a colonoscopy and to test for blood in feces. And she also wants me to have another CT scan to check for residual or new clots.

The only thing that baffles me a little, is that she thinks that two weeks off coumadins is enough before I do the genetic tests. Eveverything I've seen said 4 weeks. I don't want to be off the anticoagulants longer than necessary, but, on the other hand, I don't want to comprise the results either.

Where the genetic testing is concerned, I agree: everyone now knows of my history and it is up to them to inform their doctors. Some of them already have. But, I guess, I want to know for myself too: I have no idea why I had the PEs or where they come from.