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

Posted by heidi2020 @heidi2020, Jul 9, 2020

I was diagnosed with HIGH Factor VIII (8) about 1 year ago after having a LL leg DVT and 3 pulmonary embolisms. I'm female, in my mid 50's. I had my first mid large pulmonary embolism at 42, but never found a reason, thought it was because of birth control pills (apparently there was no Factor VIII test at that time?) So when it happened again, even though I had an injury (fall) and then flew back to the US from Europe. they said they thought it was more than just that, as it happened before in my 40's, so they ran genetic blood tests and found I had HIGH factor VIII. I was started on Eliquis 5mg 2 x day (had a few side effects but not earth shattering) and after the appropriate amount of time have now been reduced to 2.5mg 2 x day with some of the side effects also reduced with the lesser dose.

First off, is there anyone else out there with this gene? It is SO hard to find a lot of quality information since they have two blood disorders one with low factor VIII and one with high factor VIII. I SO wish they would have names it something else as there is too much info about the other that drowns out all of the info on HIGH Factor VIII, I have had to go to medical journals and studies for the most part, not exactly patient friendly, but luckily I have some experience reading these things from my previous work.

My Hematologist said if I contract COVID-19 due to my over clotting, I will most certainly not survive. Has anyone else been told this? It is extremely sobering and quite life changing. I have not been to a store, with people, or anything since March 2nd. Will I ever be able to see my Mom again (who is quite elderly) or either of my adult children if I'm able to travel to where any of them live without being masked, outdoors and very socially distanced? Will I ever be able to hug them again (obviously once their is a vaccine, but I also know that may be quite a while off). Will I have to miss their weddings, birth of grandchildren, etc.... because the risk may be death? This also greatly effects my husband as he is staying in to the same degree to protect me.

I would like to know others experiences, if you have been told the same information as me, and just any sharing regarding this disease that you would like to share. Like what drugs you take, have you had any more events?

I'm doing everything I can to be healthy (losing weight, down 20 about 20 to go), I exercise every day, walking, running, and/or a cardio mix, but beyond that I'm not sure what else I can do to lessen my risk.

Anyway, looking forward to hearing if there are more of us out there. Thanks in advance, Heidi

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mbell | @mbell | Nov 23, 2021

I’m 54 but I walk but I also mountain bike and ride once a week on a bmx track. Not the safest way to exercise with known cerebrovascular stenosis but I’m not just going to take it laying down. If I fall then I fell doing something I love. Thanks for your support, how about you?

dakotakid61 | @dakotakid61 | Jan 10, 2022

In reply to @heidi2020 "I know High Factor VIII is very rare, that's why I was so hoping I'd find..." + (show)

See my blood test results
High factor 8 at 261 %
(That test comes even after being on blood thinners for 3 months which for me is concerning. See the doc again in a couple months.)
V factor negative
DVT has brought this diagnoses to me since there is no explanation as to why the DVT

Colleen Young, Connect Director | @colleenyoung | Jan 15, 2022

In reply to @dakotakid61 "See my blood test results High factor 8 at 261 % (That test comes even after..." + (show)

Hi Dakotakid, when were you diagnosed? What treatment, if any, has been suggested?

mbell | @mbell | Feb 4, 2022

In reply to @colleenyoung "That must come as a relief, @mbell. Congrats on taking control of what you can control..." + (show)

Rebounding and riding bikes (mountain bike, fitness bike and bmx)

carriebythesea | @carriebythesea | Apr 24, 2022

Hi All,

I think I may have promised an update some time ago regarding COVID19 vaccination yes or no?

Before I post further comment, this is regarding only my situation and I'm not suggesting or advocating it for anyone else.

That said, I recently had my annual appointment and I was finally able to discuss my personal history with my doctor. The decision was no vaccine. I take Xarelto for F8 and it is also part of the protocol that they use here for COVID19 patients. The other more important reason is because of my past medical history and a new thought that I may have had an adverse reaction to treatment for my injury a long time ago. So, out of an abundance of curiosity, we decided to test the Factor VIII activity again which hasn't been done for a long, long time.

My best to one and all!

shrub62454 | @shrub62454 | Aug 5, 2022

I am wondering if taking the covid vaccine could bring about these symptoms rather than covid itself. I am seeing many side effects from the shots or boosters.

carriebythesea | @carriebythesea | Aug 7, 2022

In reply to @shrub62454 "I am wondering if taking the covid vaccine could bring about these symptoms rather than covid..." + (show)

The possibility exists that the vaccines could produce blood clots as it's noted in the possibilities of adverse reactions as posted by some of the pharma companies that produce the vaccines. The notes on it are statistically very low as they have reported them to date but for those of us that have a propensity to clot due to a variety of blood disorders & medical conditions, it's super important that people do their own research and have that conversation with their hematologist.

I did end up getting COVID since my last post and it was flu-like symptoms for me including chills/fever, very slight cough, watery diarrhea, slightly swollen nodes. I didn't develop any problems with shortness of breath or blood clots so following the guidance of my personal doctors kept in good stead. I increased vitamin C and D intake. My biggest problem was making sure that I stayed hydrated and fatigue.

I was very fortunate that it was relatively mild in my case as the symptoms were mostly over by the middle of the 4th day. I just had annoying little cough after eating for a few weeks after that, although I was noticeably improving each day that I had it.

I will say that if you think that you have signs of a blood clot - shortness of breath, sudden swelling in a leg or arm, (for the ladies, menstrual cycle that is more "clotty" than normal), it's important to get seen by a doctor immediately and get in to see a hematologist as soon as possible.

I'll look around and see if there is anything that I can find to post.

kekel12367 | @kekel12367 | Aug 7, 2022

Wow!! Omg I haven’t found anyone who also has the mutated factor VIII like me!! Mine was 184 lmao. Very high. It was apparently the reason I was declined to be a living kidney donor the end of last year.

riamac | @riamac | Aug 24, 2022

I have just been diagnosed with high factor 8. At least I know now after having2 unexplained DVT’s in my left leg. Have to stay on blood thinners

altk427 | @altk427 | Sep 29, 2022

I have high factor VII and high factor V. I have had covid 3 times. You can survive it. Interestingly, my first clotting issues happened immediately following my covid booster.

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