There have been several people on this board and the PE board who have had more than one unexplained clotting event. I'm sort of in that category except I do have ulcerative colitis which can increase a persons risk for clots, but I was in remission when I had both my clots so no one can really say what caused them for sure. My Hema refers to it as just bad luck, jokingly.

Hopefully others will chime in but know you do have company.

I've clotted three times. First two were blamed on birth control (both regular and progesterone-only), but my PEs had no cause at all, as I hadn't had anything hormonal in almost a year when they occurred. I have o other risk factors either (travel, surgery, family history, cancer, etc.).

I've been tested three times by two different doctors and I've come up negative for everything. They told me at the hospital that I just might have something that they haven't discovered yet (very possible, as new things are being discovered about clotting every day).

Idiopathic clotters aren't as rare as your doc might think. I have a study somewhere in my desk drawer that put the incidence at 25-33% or so (not exact numbers, since I haven't pulled it out and am relying on my memory). But there are really a lot more of us than some doctors seem to think.

Being a lifer is really pretty manageable. If possible (and you haven't already), you might look into getting a home tester for your INR. The insurance will often cover it under durable medical equipment, but you'd have to check with them. It does make it much easier when you're looking at a long-term relationship with warfarin.

This was helpful to hear. Many thanks for the info.

T.

Hey Toddo!

Looks like I'm in the same boat as you. I was diagnosed with my first clot when I was 15 (healthy athlete, unexplained), then my second DVT two years later.

I've been through a slew of testing and have come up as negative for every single clotting factor under the sun. Unfortunately, both of my parents have had unexplained clots as well, so it's definitely genetic.

I actually have had a lot of people reach out after seeing this article on little known symptoms: http://www.compressionhub.com/blood-clot-symptoms/

Yup, same here, it's called "idiopathic", meaning they can't explain why we clot...
I'm twice, idiopathic .
Same treatment, same, same...

Dero, good to see you before the winter hibernation (lol). Hope you have been doing well?

samdebrule, have you run in to the ClotBuster triathlete web blog yet? My friend Roland Varga run the blog and it focus' on education of blood clot through my organizations Stop the Clot athlete program. Here's a link to the story Roland did on me a few years back:

http://clot-buster-triathlete.blogspot.com/2010/02/february-athlete-of-month.html

R/
Tom

Sorry, I've been very busy and mostly MIA from the site for awhile, so I've just now seen your question. I think I'm very much in the same category as you. I've now had four separate episodes of clotting, most of which have some manner of explanation, but at the same time, it's stuff most people go through without getting clots.

Event #1 - I was postpartum. Blood is hypercoagulable and there was the "injury" of childbirth.

Event #2 - Two years almost to the day after diagnosis with the first event, I got another clot in my other leg, with no risk factors at all.

Event #3 - Again almost precisely two years later, the first leg clotted again, and again no solid answer to why, yet it wasn't altogether surprising because I do have limited blood flow in that leg due to chronic clots in it. At that point I accepted that I needed to stay on warfarin.

Event #4 - One year later I had an exploratory heart procedure done which was accessed through the radial artery in the arm. Despite starting warfarin again the same day as the procedure, I was not bridged with lovenox and what do you know, but my artery completely "clotted off" and can no longer function.

So I only have one which is truly considered 'idiopathic', yet like I said, most people have babies without clotting and can get arterial catheters without clotting, so those are contributing factors, but I don't really consider them the REASON for the clotting. I've been tested multiple times by multiple doctors, both GPs and hematologists, for clotting disorders, I have family history on both sides with clots, yet no identifiable genetic factors for clotting in any of us. But as was mentioned earlier, the field of genetics study is still changing so much, there is a real possibility of something they just don't know how to identify yet. I just figure I must be some kind of freak, ha! I have no very good answers as to why this happens, the doctors' best guesses are actually that I have problems with both my blood having a propensity to clot along with funky blood vessels that don't move blood through correctly. But it's all just conjecture, because they really have no idea. I haven't been specifically screened for cancer (though as they almost always are, my hematologist is also an oncologist and he did a very thorough medical history). But I'm healthy outside of my circulatory system, so there's no reason to suspect it, because after six years, if cancer had been tied to my clots, it would also have made itself evident in other ways too.

So yeah, we're not a big group, but there are others of us out here in a similar situation, and we just clot because who knows....