Yeah it's not uncommon to get differing opinions on that. I don't know what the answer is except if two docs tell you 6 months and one doc says forever, I'd do the 6 months, but that's me. Most people I know on these boards whose clots were attributed to birth control are not on warfarin forever. Of course there are some people who do clot again but those are the exceptions not the rule, statistically.

I definitely had conflicting opinions. I had three separate clotting events before I became a lifer ... and most people get to be lifers after only two events! But, I wound up developing some blood pressure problems after my PEs (event three) and saw a bunch of specialists. One cardiologist I saw spent some time telling me that I really needed to consider whether I should stay on warfarin for life. She was heavily against becoming a lifer... even after THREE clotting events and no identifiable cause for the PEs.

Even now, I shudder to think that she's even practicing medicine to be so cavalier about coming off warfarin. Some docs are just super cautious (maybe this cardiologist is one of them) and some docs are pretty carefree about risks (the cardiologist I saw was one of those). Ultimately, you have to do what you're comfortable with.

I think it is good to check with a second pulmonologist and to have the genetic testing done. You'll get all that information and be able to make informed decision about what is best for YOU.

And, yes, @rmb is right that those of us who clot multiple times tend to be the exception. We hang out here because we're the weirdos. The thousands of people who only clotted once aren't on these boards any more... they're out living their lives.

I was told I'd be on warfarin for 6 months when I was in the hospital. My PCP thought 3 months anticoagulation would be sufficient. She was open to doing genetic testing, and I'm glad I had it done, since it was discovered I have two copies of FVL, and the consulting hematologist suggested indefinite anticoagulation.

That said, as rmb &TnT stated, many people have one clotting event and don't have anymore problems. The most important thing is to have a doc you can work with to help you make an informed decision.

Thank you so much for all your responses. My doctor has a call into the cardiologist to see why he recommended lifetime so we can all be on the same page.

Your experience is typical. My primary and 1st hematologist suggested 6 months but my pulmonologist and NEW hematologist suggested a year. They ALL have different opinions and I found this throughout my whole recovery.
Since mine was idiopathic I decided to take them for a year.
Your situation might be different due to the fact that you KNOW your cause and may have stopped the pills.

Update. I decided to get an internist because I felt like my Primary Health doctor didn't have the time for me. She works two floors above the cardiologist I went to. She said my Pulmnologist is one smart cookie and her assessment of my situation was right on. The internist also said the specific cardiologist I saw can be very narrow minded in his thinking on blood clots and to keep up with the pulmonologist. I know there is no guarantees in this but it really put my mind at ease.

Glad to read your update! Your Internist sounds very helpful and understanding of your situation. I am trying to find a new cardiologist myself. I have the same feeling about not having time for me, etc. Its good to hear a positive experience since I am a little apprehensive to change anything in my current treatment. However, I just don't feel I am being heard/understood.

I'm glad you have an Internist and Pulmonologist that are so knowledgeable and helpful for regarding PE's!

mitchllbsed,
I asked all 4 doctors I have been to and none think I need to be referred to a hematologist. I think most PE's are handled by a Pulmonologist here in Boise. That is unless my bloodwork comes back with something genetic. Most are Hemo/Oncologists here in Boise. I hope all 4 aren't wrong.