High Factor VIII (8) Blood Clotting Disorder and its Impacts on life

Hi Chari,

I apologize for my delayed response. I haven't found too much new information as I recently moved, so I'm getting re-situated.

Have you been a treatment since your first clot?

As far I as I know, I haven't had a recurrence. I've been on one anti-coagulant or another since my original incident. After the first one, chances of another one go up and my docs haven't been willing to take me off until/unless it's considered safe to do so. Factor 8 was the only thing out of whack in my test results, so that's why it was thought to be genetic. That said, I think that there is more being learned about the impact of trauma on F8.

I've been kind of wondering about a hormonal connection, although I haven't seen any specific correlations to support that line of thought.

Carrie

Hi Julianne,

I'm sorry that you've been having such a tough path with this.

It's interesting that your brothers also tested with high F8. We haven't found a direct correlation in my case, so we've been thinking it might skip generations. I believe that my sister was not tested because she had two successful pregnancies with no complications.

Also, I've never had insurance decline to pay an F8 test. In my case, we don't test that often. I did last year (April 2022) and will again at the beginning of 2024.

Carrie

I think it depends on your doctor. I seem to remember that in the early years, I was tested once a year (maybe more often the first year) and then we decided to skip it for 5 years thinking it wouldn't change much. Other folks on the board may test more often.

I found this study some time ago. It might be of interest to people.
https://www.ahajournals.org/doi/full/10.1161/01.atv.21.5.731

Hi Heidi!
Your story is very interesting.
I have a similar story about Covid vaccine from 2021. I have Von Willenbrand bleeding disorder and Factor 8.
When I got the first shot I had a major bleed under the skin on my right shin. Hematologist said there wasn’t enough evidence to connect to the shot. So I took the second shot. Needless to say that the following week I had a nosebleed for 4 1/2 hours went to the emergency room and nobody could stop the bleed. They thought they would cauterize it. It didn’t help I did take desmopressin, but it didn’t work. This went on for eight weeks leading three times a week, so instead of clotting, I was bleeding they stop the bleed with a pill called Amicar which can damage your kidneys. I was on that for two weeks and that eventually stop the bleeding.
Coincidentally, when they scheduled me for an MRI to figure out why I was bleeding, they found that I had a fusiform aneurysm. There was no trace of that the year before.
I have not taken another shot since then and I’m very nervous about ever getting Covid.
My sister and my daughter also have van Willebrand disease, but did not have the same problem that I did with the shots or the boosters. But neither of them have factor 8.
I know this doesn’t help you directly, but know that there are people out there like you that are bleeding instead of throwing clots but we’re in the same category. I have a case with Moderna, but nothings come of anything.
Best wishes
P Hoffman

heidi2020
my daughter and both my granddaughters have HIGH FACTOR 8 clotting disorder. my granddaughter had 3 dvts in her left arm, when she was 17 and had just started on birth control pills. my younger granddaughter was tested had even higher levels. my daughter has moderately high levels. she was just diagnosed with breast cancer and is having trouble getting anyone to do reconstructive surgery when she has mastectomies done because of her factor 8. ( i had breast cancer at age 40, 33 years ago, before reconstruction was covered by insurance) i’ve never been tested to see if i’m the carrier of the factor 8. my daughter and granddaughters all have had covid, my daughter did develop a blood clot in her leg when she had covid but it wasn’t a dvt. i hope you are doing ok.

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.

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. 🙂

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.