Hi @katelyn56
It is indeed scary especially when you don't know why the clots form. (Besides the gene). While you wait to see a specialist there are things you can do to give yourself better odds such as lose weight if you are overweight, stay active and hydrated, wear supportive stockings and the like, I wish I had a magic wand for you that could ease some of the anxiety surrounding this until you find some answers, but unfortunately I don't, since all the blood thinners aren't working for you. Mayo Clinic is staffed with incredibly wonderful doctors also the Cleveland clinic specializes in this area as well. I am fortunate to have a very good hematologist where I live now. I'm not sure where or what part of the country you live in but if you have access to top tier medical. Centers such as these that is the first place I would go getting in however you can virtually or in person. I overheard somebody talking about a new blood thinner clinical trial, but I have no idea what it was, but it may be an area you also should check into, clinical trials, as perhaps it is another resource where you may find some answers. Sometimes, I know it's weird to say, but finding a Doctor who finds your case interesting can also be helpful. Please be sure to also look and post on: https://www.stoptheclot.org/ you may find some valuable information there as well that could help you. Wishing you the very best and here if you need an ear. I just haven't been around much due to travel etc.