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

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

laurenl | @laurenl | Feb 11 5:34pm

In reply to @colleenyoung "That is good information to know for women trying to conceive. Are you currently planning a..." + (show)

I am planning for the next year or so. However, I was told this really early in the process if I were to have been put on heavy blood thinners. Currently I am on low dose aspirin and high dose folic acid which my hematologist recommended as safest blood thinners.

ruthheat | @ruthheat | Feb 19 7:57pm

Hello! My name is Heather. I had a stroke 5 years ago. This is how we discovered that I had elevated Factor 8. My F8 score was over 700! My doctors had never seen a number so high. We found out it was hereditary as my uncle has it too. I’ve been on Warfarin ever since. I hope to change blood thinners as getting my INR checked every month is a pain and my veins don’t cooperate like they used to.

Lori, Volunteer Mentor | @loribmt | Feb 20 8:54am

In reply to @ruthheat "Hello! My name is Heather. I had a stroke 5 years ago. This is how we..." + (show)

Welcome to Connect, Heather, @ruthheat Having a stroke is a rough way to find out you have a blood condition. I’m glad you’re doing ok! Did you have any long term damage from the stroke?

As you’ve found out, High Factor Vlll clotting disorder is hereditary. Was your event the first time it was discovered or correlated with health issues in your family that you know about? Was your uncle diagnosed around the same time as you?

Colleen Young, Connect Director | @colleenyoung | Feb 25 1:58pm

In reply to @ruthheat "Hello! My name is Heather. I had a stroke 5 years ago. This is how we..." + (show)

Hi @ruthheat, I'd like to add my welcome and also invite you to share your stroke experience and recovery in this related forum here:
- Stroke & Cerebrovascular Diseases Support Group https://connect.mayoclinic.org/group/cerebrovascular-diseases/

ruthheat | @ruthheat | Feb 25 3:40pm

In reply to @loribmt "Welcome to Connect, Heather, @ruthheat Having a stroke is a rough way to find out you..." + (show)

I am fortunate to have no long term damage from the stoke, than goodness! I am not sure when my uncle was diagnosed. He was a doctor and never told his siblings about it until I had my stroke. He suggested my doctors do a panel to test for Factor VIII since he had a history. Luckily my docs had already ordered a panel a few days earlier. My grandfather died young in the 1980's. We now wonder if he had the Factor VIII gene and that caused his death.

Lori, Volunteer Mentor | @loribmt | Feb 25 4:32pm

In reply to @ruthheat "I am fortunate to have no long term damage from the stoke, than goodness! I am..." + (show)

Interesting about your uncle having Factor Vlll and not sharing that information with the family if he knew about it. Though more is known about the blood condition now than in the 80s. Well, now that you’ve been diagnosed you have the positive advantage of being able to control the situation. Do you have siblings or one of your parents who have this condition too?

katelyn56 | @katelyn56 | Apr 10 8:36pm

I happened upon your story seeking information on hereditary elevated factor 8 clotting disorder. My daughter is very ill. She’s 46. Looking for expert guidance in this field. The drs are just willing to sit back and let her die because they say there is no research? HELP. She is Coumadin, eliquis resistant. She just continues to throw blood clots. 3 surgeries for arteries and veins in her left leg.

Lori, Volunteer Mentor | @loribmt | Apr 11 10:29am

In reply to @katelyn56 "I happened upon your story seeking information on hereditary elevated factor 8 clotting disorder. My daughter..." + (show)

Welcome, @katelyn56. Oh my gosh, you must be at your wits end with worry for your daughter! Since High Factor VIII (8) Blood Clotting Disorder is more rare this may be out of the experience of her local doctors.
I’d like to suggest requesting an appointment from a Mayo Clinic location…either Rochester, Phoenix or Jacksonville. http://mayocl.in/1mtmR63
I’m not sure where your daughter lives, but it would be worth the effort to get second opinion.

There are also Mayo Network Health systems across the country who meet Mayo’s high standards of excellence. Here is the website with a map and location of these affiliated medical providers.
Is your daughter near a larger teaching hospital or clinic such as Mayo, Cleveland Clinic, etc., where their range of experience is deeper?

katelyn56 | @katelyn56 | Apr 11 11:39am

In reply to @loribmt "Welcome, @katelyn56. Oh my gosh, you must be at your wits end with worry for your..." + (show)

We are 50 miles from Cleveland. Wd did go there already. Some old Dr and he did absolutely nothing for her. They said the had patients like her, they lied. The hematologists, vascular drs are all just willing to let her die. She is suffering and I’m getting angry. I can find NO research, literature on this. I’ve lost faith in the health system. I will not quit however. Thank you

Lori, Volunteer Mentor | @loribmt | Apr 11 12:57pm

In reply to @katelyn56 "We are 50 miles from Cleveland. Wd did go there already. Some old Dr and he..." + (show)

Katelyn, There are numerous research articles regarding Factor V and Factor Vlll blood clotting disorders. I was going to pull a couple for you but instead I’m going to give you the link so that you can look through these in hopes of finding some answers. It might point you in the right direction for guidance. Treatment can depend on different types and subtypes of this clotting disorder so it’s important that doctors are sure of the correct diagnosis.

Click on the blue link and it will take you to Scholar.google where this page opened up when I typed in the search:
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C14&q=treatment+of+factor+Vlll+blood+clotting+disorder+&btnG=
I can feel your emotions bubbling to the surface. If this were my daughter I’d be going all momma bear too! You want to save your daughter and you want answers now! I owe my life to the hematology department at Mayo-Rochester. From my personal experience I know they’re relentless in trying to find answers to complex issues.

As I suggested earlier, please try requesting an appointment at Mayo. Here’s that link again. http://mayocl.in/1mtmR63

You don’t need a doctor’s referral but I’ve heard it can make a difference. But you can get the ball rolling by checking the link I posted and follow the prompts for new patient and preferred location.

I hope this is helpful for you. Will you please let me know if you find out any thing more from the research?

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