HIGH Factor VIII (8) Blood Clotting Disorder and Impacts to life/COVID

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

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

@katherina

Thank you, I didn’t mean to ask for medical advice just curious about others experience with elevation. Also I can’t find much information on the internet about factor 8. I have an appointment in the coming weeks to review test results. Thank you for your reply!

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That's fine – I just wanted you to know we can share our experiences, and answer some questions, but interpreting test results is best left to the pros. If it is causing you anxiety while you wait, can you call or email the doctor's office for a preliminary explanation?
Sue

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@carriebythesea

I think at one time, they did think it was one in a million. That's what I was told when I was diagnosed 20 years ago. Hopefully, they had more current information now but my understanding is that it is still considered rare.

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Info on high factor VIII is hard to come by!

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@katherina

Hello Heidi! I was just diagnosed with the high factor 8 as well after having pie’s following shoulder surgery and a mild stroke. Looks like they will prescribe me blood thinners too. It’s very new the test result. You posted a while ago. How are you doing? Have you found any other information? Hope you’re well.

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@katherina im doing great! I have not had any clots since being on Eliquis initial dose not maintenance dose. I still have pain in my clot leg. It's my u Der standing it may never go away. It's something I live with. Sometimes it's bad here and there but there's never been an issue. They think it's just because my body has had to reroute around the injury. There is definitely a lack of resources for high factor VIII but it's getting better all of the time. I did find info on this website of value as well. In case you find it of interest. https://www.stoptheclot.org/

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@katherina

Hello
Does living at altitude increase the risk of pulmonary embolisms? Or bpt? I had PEs following a surgery, and mild stroke. Now they tested for factor 8 and it’s 254% so I’m assuming that is a life sentence for blood thinners. Haven’t heard from doctor yet but received my result. Also will they do any testing to figure out why it is elevated? Thank you!

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Hi Katherina,

Just to share part of my experience with you. My first F8 test result was absurdly high – 400+ – almost didn't survive that but I did. My F8 was tested several times after that and it did drop after a several months. In my case, the reason it dropped was because of recovery from trauma back injury. After a few years, we stopped testing because it settled in the same neighborhood as yours, which is still plenty elevated. At that point, we figured it wouldn't improve much more and was the "real deal" elevated F8 condition. I was on coumadin for many years but switched to Xarelto a few years ago so I could have my green leafy veggies back.

As Sue mentioned, what other tests they do will depend on your specific situation.

I don't know if living in a high altitude increases the risk of clots or PE but you did remind me that I had to promise that I wouldn't go deep sea diving or jump out of airplanes. I left to door open for hot air ballooning. LOL.

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@kathiemk

Info on high factor VIII is hard to come by!

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Hi Kathie,

Yes, it is. I'm always looking for any new information. 🙂

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@carriebythesea

Hi Katherina,

Just to share part of my experience with you. My first F8 test result was absurdly high – 400+ – almost didn't survive that but I did. My F8 was tested several times after that and it did drop after a several months. In my case, the reason it dropped was because of recovery from trauma back injury. After a few years, we stopped testing because it settled in the same neighborhood as yours, which is still plenty elevated. At that point, we figured it wouldn't improve much more and was the "real deal" elevated F8 condition. I was on coumadin for many years but switched to Xarelto a few years ago so I could have my green leafy veggies back.

As Sue mentioned, what other tests they do will depend on your specific situation.

I don't know if living in a high altitude increases the risk of clots or PE but you did remind me that I had to promise that I wouldn't go deep sea diving or jump out of airplanes. I left to door open for hot air ballooning. LOL.

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Thank you for your reply. I didn’t know or understand the level could go down. I am recovering from shoulder surgery in May, I had read surgery can increase it. My van willdebrand test was high as well. I am still waiting to hear from the doctor. I’m sad to think about going on blood thinners as it was really awful when I had to in the summer with regards to female issues and wound up in the hospital because of that.

It is extremely difficult to find any information on this factor 8 and my doctor won’t make an appointment with me, he’s booked for months and says we will just message about it.

Why no deep sea diving? Pressure?

Thank you again!

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@katherina

Thank you for your reply. I didn’t know or understand the level could go down. I am recovering from shoulder surgery in May, I had read surgery can increase it. My van willdebrand test was high as well. I am still waiting to hear from the doctor. I’m sad to think about going on blood thinners as it was really awful when I had to in the summer with regards to female issues and wound up in the hospital because of that.

It is extremely difficult to find any information on this factor 8 and my doctor won’t make an appointment with me, he’s booked for months and says we will just message about it.

Why no deep sea diving? Pressure?

Thank you again!

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Hi Katherina,

I can relate to how you feel. I was really upset about having to take something for the rest of my life but having been through having had PE's, I didn't really see another option. Once was more than enough and I can remember feeling a bit traumatized by it.

Yes, I believe the deep sea diving was about pressure and oxygen level should something go wrong.

I'll see if I can find some of the information I had about F8 – or search for more recent material. My appointments are now just annual 10-minute check-in's so I don't get to pick my dr's brain about things like I used to but I may request a test just to see where things stand now.

In the meantime, I'll be keeping you in my thoughts for your recovery from the shoulder surgery.

Carrie

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I have factor viii levels that are elevated (291) but Ive never had any clots so it’s scary to know I am a high risk. I’m on aspirin a day due to basilar artery moderate blockage so is aspirin enough? I see a hematologist soon.

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@mbell

I have factor viii levels that are elevated (291) but Ive never had any clots so it’s scary to know I am a high risk. I’m on aspirin a day due to basilar artery moderate blockage so is aspirin enough? I see a hematologist soon.

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I would be curious to see what your hematologist says. I have yet to get into mine and only get messages that haven’t really addressed my questions so I’m going to find another one in my area. Good luck!

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@mbell

I have factor viii levels that are elevated (291) but Ive never had any clots so it’s scary to know I am a high risk. I’m on aspirin a day due to basilar artery moderate blockage so is aspirin enough? I see a hematologist soon.

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It would be hard for us to answer that question. Sometimes they wait on having you take another med if you haven't had a clot. That said, you're factor VIII is definitely elevated enough to where my hematologist would want to check things out to make sure that you're safe. We'll be interested in what your hematologist has to say about it,

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Saw the hematologist today and he said that since all the other tests were negative that just the factor 8 alone due to no family history of blood clots and no history myself of any blood clots, that the aspirin and Lipitor I’m on are enough. My risk is still high but I can relax a bit since I’m doing everything I can to reduce my risks. I don’t smoke or drink alcohol, I exercise now and I’ve lost 10 pounds. Fingers crossed 🤞🏻

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@mbell

Saw the hematologist today and he said that since all the other tests were negative that just the factor 8 alone due to no family history of blood clots and no history myself of any blood clots, that the aspirin and Lipitor I’m on are enough. My risk is still high but I can relax a bit since I’m doing everything I can to reduce my risks. I don’t smoke or drink alcohol, I exercise now and I’ve lost 10 pounds. Fingers crossed 🤞🏻

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That must come as a relief, @mbell. Congrats on taking control of what you can control and making the factor 8 your motivation to live healthy. What kind of exercise do you like to do?

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