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High Factor VIII (8) Blood Clotting Disorder and its Impacts on life
Blood Cancers & Disorders | Last Active: Sep 10 9:49am | Replies (133)Comment receiving replies
My mother was diagnosed 10 years ago. Ever since, I have been going crazy with drs asking to get tested. I was told I’m crazy. I had injury and required knee surgery. I awoke to a blood clot from surgery. I have been in Eliquis since feb. Initially 10mg twice daily and now 5mg twice daily. Once decreased, pricking pains in stomach, back, back of head, and area of surgery started to occur. Edema in my lower legs, both, started to set in. Dr performed Doppler imaging and stated their were no clots. Here’s my question. In reading extensively, there are so little cases for high factor 8. My mother is one of them. Very high factor 8. My initial factor 8 levels were high and that’s 4 months on the Eliquis. After the initial diagnosis of the clots and the initial result of high factor 8, every where I read tells me they should only be doing a VENOGRAM instead of Doppler. Every where I have read from notes and procedures is Doppler in inefficient for factor diagnosis and once diagnosed it’s highly recommended that VENOGRAM be used in lieu of the Doppler. The efficiency of Doppler was reported as being less than 30% accurate as to where the VENOGRAM is 80% accurate. I am awaiting my Factor 8 antigen testing to be completed. From everything I have read and please don’t quote but factor 8 testing is relatively new. I believe less than 20 years. So. Dr’s please be patient with my emotions. My life is flipped upside down right now and still no answers. The numerous Doppler images will possibly not show clots if you are high with FACTOR 8. Any one can shed some light. Please do. It’s been a lifetime of pain. No answers.
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Hi @danielsolutions1, I add my welcome. As per the suggestion by @carriebythesea, I moved your post to this existing discussion:
- High Factor VIII (8) Blood Clotting Disorder and Impacts to life/COVID https://connect.mayoclinic.org/discussion/high-factor-viii-8-blood-clotting-disorder-and-impacts-to-lifecovid/
I did this so you can read previous posts and connect easily to Carrie and other members like @heidi2020 @katherina @debbirn and others who have been diagnosed with Factor 8 or have family members with experience.
@danielsolutions1
Hello, and welcome to the board.
I can only tell you what I've been told. Always consult a hematologist for your care.
I'll be honest one of the reasons we moved to a larger city was to find really good care along with a hematologist I trust and respect in the treatment of my high factor VIII. I have this gene and I also passed it along to both of my children unfortunately. Both of their hematologists feel they are low risk, but should be treated for short times whenever they have surgery or certain times during/around/after pregnancy. They are both young and physically fit adults which does factor into their decisioning. And any swelling in one limb versus both should send them to get an ultrasound without waiting.
Now for me it's obviously a bit different since I have had multiple pulmonary embolisms. I have lifelong minimal swelling in my "bad" leg on and off that can be more bothersome depending on a lot of factors. This is the leg we believe all the blood clots have originated from. I was told that ultrasounds are the way to go for my situation as the risk is relatively low being on a maintenance dose of Eliquis and it's better to go in than not go in if necessary. If they suspect pulmonary embolisms ( as just happened to me again due to extreme shortness of breath and swelling) then I have to get those associated tests instead/in addition. As applicable It was negative thank goodness. I was having a reaction to a medication I was on for another condition. But this leg is painful on and off as it has been since my very first blood clot and i believe it will likely be that way for the rest of my life
Have you tried compression stockings for a painful leg? They help me. I also use a heating pad sometimes. And Sometimes ice on my ankle to reduce the swelling there. Please check with your doctor that these would be ok for you to do if you wish to try them. Unfortunately it is something I've learned to live with.
Other life things that have personally helped: staying hydrated, walking, keeping my feet up at night before bed, losing weight as applicable. (Still working on that one while I'm not huge I do notice a difference).
I wish I had some magic pill that would make you feel better but I do not. Time helps it get better, but for me the pain never fully goes away but it's SO much better than in the beginning. Time heals is my motto. Both in anxiety about it happening again and pain wise. At some point I had to choose between it controlling me or me controlling it. I made a conscious decision to stay busy and active and it helps me live a pretty normal life with a few modifications for more dangerous activities but that's about it.
I have had a surgical procedure and we stop and start the medication as applicable per my hematologist. I had one in January and I have another one in a few weeks. It gives me a little anxiety but not enough not to have the procedures. I know getting healthy in every way contributes to my overall health and that's my plan slow and steady!
So hang in there it gets better with time. At least it did for me.
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Hi Daniel,
First, I'm not a dr - just someone else with elevated F8. Second, no you aren't crazy by any means. 🙂
The blood test for F8 is a little over 20 years old. I was one of the first in my area.
Just cursory look at the Venogram vs. Doppler, it looks like there is some risk to people who have DVT to do the Venogram and you have to go off your blood thinner/anticoagulant to do it. Your dr. might not have wanted to increase your risk of clots given your high F8 numbers. That said, you are right to need to know what is causing edema and pain especially since you are already on Eliquus and insist on it one way or another. There may be another way that they can evaluate the edema without increasing your risk of a major clot. If you need to go to ER, please do that.
A genetic high F8 will always be higher than the norm. Surgery, trauma can increase F8 levels in anyone.
Do you have a hematologist yet?
Also, we have a thread called High Factor VIII and Covid Vaccine where we've been exchanging some F8 info. You're welcome to read through and ask questions as we are all trying to learn more. 🙂