1. < Blood Cancers & Disorders

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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altk427 | @altk427 | Sep 29, 2022
In reply to @carriebythesea "The possibility exists that the vaccines could produce blood clots as it's noted in the possibilities..." + (show)
@carriebythesea

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.

Jump to this post

My first pulmonary blood clots happened immediately after my booster. I have had both rounds of vaccine and one booster. Covid x 3. No more vaccines for me.

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1 reply
backs | @backs | Oct 25, 2022
In reply to @heidi2020 "I know High Factor VIII is very rare, that's why I was so hoping I'd find..." + (show)
@heidi2020

I know High Factor VIII is very rare, that's why I was so hoping I'd find others here. Someone said one in a million, but I have not verified that statistic to know if it's true or not.

Jump to this post

Heidi, I have HIGH factor VIII and HIGH von willebrand. These are new diagnoses for me after having had DVTs and PEs earlier this year. How are you? I know how you feel with this rare condition, limited resources and the anxiety about how to best handle this in the midst of COVID. I am also on Eliquis 5 mg x 2 per day.
Hugs,
Sudie

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backs | @backs | Oct 25, 2022

Also, I had COVID about 2 months after DVTs and PEs and used Paxlovid and Lovenox. It was scary but I survived! Sudie

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madmamsqueek | @madmamsqueek | Dec 16, 2022

In July of 2021, I went to the ER because I thought I was having stomach issues. I ended up with multiple bilateral lung clots, pneumonia, and sepsis. I had previously felt out of breath but thought it was because I was getting old and fat, so I never thought it could be a big deal. I have never been on birth control or HRT, I haven't traveled or flown. My mother and younger sister had clots and were put on blood thinners for life but were never told of this high factor 8 issue. I took Eliquis for 3 months but the side effects were horrible. Pins and needles in my feet and hands and face and fainting. The Dr's said the blood thinners don't cause that type of side affect but it did for me. I always have strange reactions to everything. I am allergic to too many things, especially medications. So they changed me Zeralto? And that gave me a massive headache, I thought I would have to go the ER. My sister and mother were on Warafin and that was horrible. So I decided that no medication was better. In Oct I went to the ER again, with what I thought was another stomach issue but this time I couldn't stop vomiting. Ugh. They thought I had a intestinal blockage from a blood clot, I went through surgery. They were giving me injections in my stomach and said I do need to live on them. So I said I would do the shots. Lord help me, those were way worse. So no meds again. I still have some issues from the Eliquis in regards to pins and needles in feet. Ugh. My Factor 8 levels were at 315%, I don't know if that is really all that high because like everyone else it is hard to find I information. So I have decided to go with quality instead of quantity of life. This is the first time I have heard about a high factor 8 and covid. I can't take the shots and never really worried about catching it. Now I'm not so sure?

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2 replies
carriebythesea | @carriebythesea | Jan 14, 2023
In reply to @madmamsqueek "In July of 2021, I went to the ER because I thought I was having stomach..." + (show)
@madmamsqueek

In July of 2021, I went to the ER because I thought I was having stomach issues. I ended up with multiple bilateral lung clots, pneumonia, and sepsis. I had previously felt out of breath but thought it was because I was getting old and fat, so I never thought it could be a big deal. I have never been on birth control or HRT, I haven't traveled or flown. My mother and younger sister had clots and were put on blood thinners for life but were never told of this high factor 8 issue. I took Eliquis for 3 months but the side effects were horrible. Pins and needles in my feet and hands and face and fainting. The Dr's said the blood thinners don't cause that type of side affect but it did for me. I always have strange reactions to everything. I am allergic to too many things, especially medications. So they changed me Zeralto? And that gave me a massive headache, I thought I would have to go the ER. My sister and mother were on Warafin and that was horrible. So I decided that no medication was better. In Oct I went to the ER again, with what I thought was another stomach issue but this time I couldn't stop vomiting. Ugh. They thought I had a intestinal blockage from a blood clot, I went through surgery. They were giving me injections in my stomach and said I do need to live on them. So I said I would do the shots. Lord help me, those were way worse. So no meds again. I still have some issues from the Eliquis in regards to pins and needles in feet. Ugh. My Factor 8 levels were at 315%, I don't know if that is really all that high because like everyone else it is hard to find I information. So I have decided to go with quality instead of quantity of life. This is the first time I have heard about a high factor 8 and covid. I can't take the shots and never really worried about catching it. Now I'm not so sure?

Jump to this post

Hi Madmamsqueek,

The normal range for Factor VIII is between 50-150. Anything higher than that increases your clotting risk exponentially. That's why your doctor is trying to find an anticoagulant that you can tolerate. Your F8 level is pretty high. When I was originally diagnosed, mine was in high 400s and had PE's which I almost did not survive. I tolerate the lowest dosage of Xarelto pretty well after years on Warfarin. I hope that you will be able to find something that works for you and keeps you safe from blood clots.

Best,
Carrie

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carriebythesea | @carriebythesea | Jan 14, 2023
In reply to @altk427 "My first pulmonary blood clots happened immediately after my booster. I have had both rounds of..." + (show)
@altk427

My first pulmonary blood clots happened immediately after my booster. I have had both rounds of vaccine and one booster. Covid x 3. No more vaccines for me.

Jump to this post

Thanks for your update, altk427. I'm very sorry that happened to you but it gives me a little piece of knowledge to add to my own puzzle.

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carriebythesea | @carriebythesea | Jan 14, 2023

I promised the community an update, so here it is in hopes that it helps someone else. I just recently received my F8 levels, and it has dropped. Looking back over time (more than 20 years) the level has been coming down. We're not sure what to make of it right now. I will get another F8 activity next year. This was an unexpected result as we tested it more of on a lark thinking it had settled in the mid-200's. I realize it begs more questions than answers right now. I'll post results same time, next year if our thread is still active.

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vta | @vta | Feb 11, 2023
In reply to @madmamsqueek "In July of 2021, I went to the ER because I thought I was having stomach..." + (show)
@madmamsqueek

In July of 2021, I went to the ER because I thought I was having stomach issues. I ended up with multiple bilateral lung clots, pneumonia, and sepsis. I had previously felt out of breath but thought it was because I was getting old and fat, so I never thought it could be a big deal. I have never been on birth control or HRT, I haven't traveled or flown. My mother and younger sister had clots and were put on blood thinners for life but were never told of this high factor 8 issue. I took Eliquis for 3 months but the side effects were horrible. Pins and needles in my feet and hands and face and fainting. The Dr's said the blood thinners don't cause that type of side affect but it did for me. I always have strange reactions to everything. I am allergic to too many things, especially medications. So they changed me Zeralto? And that gave me a massive headache, I thought I would have to go the ER. My sister and mother were on Warafin and that was horrible. So I decided that no medication was better. In Oct I went to the ER again, with what I thought was another stomach issue but this time I couldn't stop vomiting. Ugh. They thought I had a intestinal blockage from a blood clot, I went through surgery. They were giving me injections in my stomach and said I do need to live on them. So I said I would do the shots. Lord help me, those were way worse. So no meds again. I still have some issues from the Eliquis in regards to pins and needles in feet. Ugh. My Factor 8 levels were at 315%, I don't know if that is really all that high because like everyone else it is hard to find I information. So I have decided to go with quality instead of quantity of life. This is the first time I have heard about a high factor 8 and covid. I can't take the shots and never really worried about catching it. Now I'm not so sure?

Jump to this post

I was diagnosed with a high fv8 2 years ago. I recently read articles regarding excess clotting from Covid damage to your glycocalyx, capillary cell lining. Not surprising given the engineering of COVID 2. I am on thinners, too Xarelto. but am looking for ways to repair my cell wall linings, and try more natural clot inhibitors, such as Curcumin, Garlic, and ginger. It would be nice to find a researcher that has worked in this area. ALso, I have read that high RBC's enhance clotting, which I have too. altho I believe it may be due to taking vitamin D and C a bit overzealously.....

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juliannemarieadam | @juliannemarieadam | Apr 7, 2023

Hi Heidi,

My name is Julianne. I have High Factor 8. It is genetic. I got a clot in my leg when I got Covid the first time February of 2020. Vascular surgeon tested me for it. I’ve been over 300 for 3 years and get tested every 3 months.
I have two brothers. I asked them to get tested as the doctors told me it is genetic. They were both positive. My dad died instantly of a clot so it is most likely from his genetic line.
I’ve learned so much about High Factor 8 in 3 years.
If you have siblings …get them tested. My nephews and nieces now have to get tested. Brothers are now starting blood thinners. I am 56 years old. Brothers 50 and 57.
One parent hands this down to their children and so on.
They don’t normally test for Factor VIII and it’s a GENETIC test. Not a normal blood test. So insurance usually do not pay for it. It’s usually around 300.00 at Quest labs.
If I didn’t get Covid in February of 2020….I would never know I had this. Doctors and specialists told me to NOT get vaccinated as they did not know what it would do to clotting. I got clot in lower leg. They put me on Xarelto and I peed blood for 6 months and then I had 6 Kidney stones in a year. I had 6 stents put in my kidney so I wouldn’t throw any clots and they took out a piece of my ureter.
I’ve had Covid documented and tested 4 times.
I am very active and workout everyday. I got off the Xarelto due to my kidneys couldn’t take it anymore. I had no problem for a year and a half and hematology told me to try Eliquis. So I did. After 1 month…I ended up in hospital (this past March)with kidney infection and 2 stones. I am no longer taking the Eliquis. I do better without the blood thinners. I will only go on and bridge off if I have a surgery. Don’t get me wrong …doctors want me on it everyday and you should be. But my kidneys cannot take it anymore. This is just my own body.

It’s very important that you understand how risky it is if you ever have surgery. You can throw a clot in a small vessel or an artery.

Please have your siblings tested.

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1 reply
yellsome | @yellsome | Apr 9, 2023

I was just diagnosed with high factor 8 last week, after having DVF and a pulmonary embolism last summer,,,,I did have a mild case of Corvid in Jan..I have been all over the internet getting info on it,,,,I am diabetic on insulin and 76 yr old...How often should we be tested? I see the specialist again in Oct....

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