My first two clotting events (both just DVTs) were blamed on birth control. I had no identified cause at all for my PEs (which makes the earlier assumption about BC somewhat questionable). Also, I've been tested three times by two different doctors and I have no known clotting disorders.

I'll note that a fair number of clots wind up being ideopathic (with no known cause). I have a copy of a study somewhere in my desk drawer that I think put the number somewhere around 25-33% ... but I'd have to look it up to be sure of the exact number. Doctors act like every clot has some sort of clearly identifiable cause but the truth is that there are a lot of us who clot and don't know why.

I really do have to disagree with your doctors. The Pill has been causing blood clots (well documented) for 50 years now. The current generation of pills is somewhat less likely to cause clotting than in years gone by (as they've adjusted the doses of hormones). Even saying that, however, some of them seem to have high incidences if clotting (hence all the class action lawsuits).

It does sound like you've had quite a go of it with your clots. It's possible the pulmonologist will order other lung function tests to gauge how things are doing. It's possible that he/she won't have had that much experience with clot patients (and not all have) and may not be that helpful. It's possible he/she will be the most knowledgeable and helpful doc you've seen so far.

I definitely hope that the appointment gets you some answers. My experience seeing a pulmonologist was basically a bunch of talking and a bunch of tests ordered. You won't get any answers at this appointment (unless you've already had the blood drawn for the thrombophilia screening.). But, I hope the experience is generally a positive one.

I will note, that even if you do have one of the clotting disorders, it doesn't automatically mean blood thinners for life. Different disorders are treated in different ways and that's something a hematologist can help sort out, if you get there.

Please post an update after your appointment! I'd love to know how things go.

I don't think having a blood clot from contraceptives is common but for some women, that's the only risk factor they have.. I wonder if what your doc's are trying to say is that contraceptives increase the risk of blood clotting. So usually, with that increased risk, along with other risks, ie sedentary, genetic clotting factors, smoking etc, that's where the odds increase. B

But some people are just prone to clotting for no known reason. Most hematologists will tell you, they can test for certain genetic factors, but genetic clotting testing is evolving and there's so much they don't know yet about how genetic plays a role, if there are things that haven't been discovered yet or can even test for yet. My hema said sometimes, people just like to clot and we don't know why.

I think it's good to have the genetic testing, regardless if your doc's think contraceptives alone was the cause or not. At first my docs thought my BC caused my clots, given my age. But then I clotted again once I was off warfarin. I have no known genetic clotting disorders. I mean, to me, there's not always going to be a clear cut reason for the clots.

As far as your 6 month visit, I think they just want to check in and see how you're doing and discuss next steps. I wouldn't worry about it too much especially the genetic testing. It's really just to see if there's anything additional going on. Doesn't mean your sick or unwell.

I just hit 6 months post-PE and my clots were blamed on my BC (which I had only taken for 19 days when I was diagnosed) as I have no known genetic factors. I will be going in on the 29th to get bloodwork done to test, just to stay on the safe side, which everyone (my family and doctor) thinks is a good idea. I'm also going to be taking baby aspirin as an added safety blanket - it's not much, but it will at least give me peace of mind and at least a little bit of protection off of Warfarin.

I've been having some issues with the heat and breathing deeply lately and have been wondering if I should go to a specialist to get my lungs checked out as far as functionality - I was never told if I had an infarction or any permanent damage, although I feel pretty close to normal besides the random throbbing pains I get when I overheat, I would like to still get it checked out. What kind of doctor would be best for this?

Stephanoodle, you may want to check with your GP first to see what he recommends. There may be some tests he can do without having to see a specialist. I personally don't think it's worth seeing a specialist unless you are having daily breathing issues but if it's concerning, for sure talk to your doc first.

Stephanoodle, I dumped my GP when he missed the diagnosis and I ended up in the hospital. My hospital pulmonologist has done all the follow up and has been great. From the file they should be able to tell and show you about any infarction(s) and answer any questions directly. This has saved me much anxiety over the 6 months. Good luck!

Thanks everybody for the replies. Sorry it got me so long to post again, but we had to move houses on a really short notice (here comes additional stress!). This year has been really weird for me!