Does anybody on here have Hereditary elevated Factor VIII?

Hello @katelyn56. I know you’re frightened and I’m so sorry you’re going through all of this. I’ve replied several times and given you information about other members who have Factor Vlll. I’ve also given you links to request an appointment with Mayo Clinic in hopes that their huge depth of knowledge and experiences with millions of patients would be able to give you the help you need. I’ve experienced this first hand from my outstanding hematologist oncologist and collaborative team at Mayo.
Click on this link which will take you to the Mayo Clinic’s site to request an appointment. http://mayocl.in/1mtmR63

You made reference last time that insurance might be an issue. There are instances when a disease is beyond the capability of local doctors and insurance will grant approval for an out of state visit to a specialty clinic such as Mayo. It takes a phone call to the insurance provider! It could really be worth your while to get a second opinion, to be seen at Mayo or try for a Tele-Health consult. You won’t know until you try!

Here the link a discussion with other members in Connect who have been diagnosed with High Factor VIII. You’ll meet @heidi2020 @garlamba @jenhaz
https://connect.mayoclinic.org/discussion/high-factor-viii-8-blood-clotting-disorder-and-impacts-to-lifecovid/
Who diagnosed the Vlll for you? This is a familial mutation. Does anyone else in your family have similar clotting incidences?

Hello @katelyn56. I know you’re frightened and I’m so sorry you’re going through all of this. I’ve replied several times and given you information about other members who have Factor Vlll. I’ve also given you links to request an appointment with Mayo Clinic in hopes that their huge depth of knowledge and experiences with millions of patients would be able to give you the help you need. I’ve experienced this first hand from my outstanding hematologist oncologist and collaborative team at Mayo.
Click on this link which will take you to the Mayo Clinic’s site to request an appointment. http://mayocl.in/1mtmR63

You made reference last time that insurance might be an issue. There are instances when a disease is beyond the capability of local doctors and insurance will grant approval for an out of state visit to a specialty clinic such as Mayo. It takes a phone call to the insurance provider! It could really be worth your while to get a second opinion, to be seen at Mayo or try for a Tele-Health consult. You won’t know until you try!

Here the link a discussion with other members in Connect who have been diagnosed with High Factor VIII. You’ll meet @heidi2020 @garlamba @jenhaz
https://connect.mayoclinic.org/discussion/high-factor-viii-8-blood-clotting-disorder-and-impacts-to-lifecovid/
Who diagnosed the Vlll for you? This is a familial mutation. Does anyone else in your family have similar clotting incidences?

This genetic disease is one out of a million. As I said before I do NOT have hemophilia. I have hypercoaguability. It’s like a run away freight train. I appreciate your comments. It does not address what I have. TY

Fortunately for her blood thinners work. They do not for me.

Fortunately for her blood thinners work. They do not for me.

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.