I was diagnosed with a DVT in my right arm a year ago. I was 26. I always ate right, exercised, kept fit and healthy. No smoking, no birth control, no injuries, no trips anywhere.

7 months later I was finally diagnosed with a genetic blood clotting disorder. The hematologist said it was probably the mildest genetic disorder I could possibly have, and said that folic acid would be enough to keep it at bay.

Fast forward to 1 month ago, and I have a 2nd DVT in my arm again. Back on blood thinners.

What is your current treatment plan?

The current plan is just 3 months on blood thinners and reevaluating from there. I have no family history either so I'm not sure a genetic disorder would be involved.

I've had two DVTs and one round of PEs and we don't really know why I got them. The DVTs were theoretically caused by birth control (BC), but the PEs were unprovoked, which makes the BC less likely. I've had all of the genetic testing done three times and I've been negative on anything. They've told me I might just have something that they can't test for yet.

I will note that I have no family history either. Also, not everyone figures out what caused their clots. I read a study a while ago that said that maybe 25-33% of clots are "unprovoked" and they never figure out what caused them.

In my opinion, sometimes there can be a perfect storm of events. Dehydration, being sick, wearing clothes that are too tight, sitting still for too long, having a foot or ankle injury can all contribute. Throw in birth control and it could've been too much. It's hard to know for sure. Many people have clotting disorders and never clot. Others have no disorders and clot repeatedly (I fall into this category).

The plus is that you've been diagnosed (sometimes the hardest part!) and you're being treated. That part of recovery is already happening. However, sometimes the MENTAL recovery can be much harder. You should address that head on, just like you would any other medical issue. If you're OK with meds or therapy, you should look into those. If not, maybe try journaling, meditation, exercise (as tolerated and if OK with your doc), support groups, and etc. The anxiety doesn't always resolve itself, so treating early is always a good idea (and it'll make you feel like you've got some control over the situation.)

Hang in there. You GOT this.

I had no known cause. No genetic factors. It happens, nonetheless. It took a while to get over the anxiety that every leg pain was another clot. I had a few trips to get scanned to put my & my doctor's mind at ease. Eventually, you get on with things. I'm a long distance runner, so I spend a lot of time with leg pain these days, but it's easier for me to put the fear down. It's worth getting tested to see if you have the factors, but, as you said, a large % of clots have no known cause. In other words, it's a pretty normal place to be in the DVT world. Take your time - you'll be fine!

Thank you for the replies, they've given me some comfort. I recently complete a long bike race and am wondering if that could've been the start to all of this as I was likely not drinking enough water or taking in enough electrolytes. Still, I feel very anxious about the cause as well as being on blood thinners. I'm almost scared to do anything. I'm not sure I can get myself into work tomorrow with all of this anxiety weighing on me.