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High Factor VIII (8) Blood Clotting Disorder and its Impacts on life
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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I get tested 3-4 times a year for High Factor VIII by my hematologist.
I’ve been doing this for 3 years now.
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1 ReactionDo your number ever improve?
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1 ReactionSorry. I thought I responded yesterday. My numbers stay high. They never come down to normal even with Xarelto or Eliquis.
I am off Eliquis now due to my kidneys. So I am on no blood thinners. Me and my hematologist talked and I will only take Eliquis if I fly more than 2 hours or ride in a car more than 4 hours. But this is just me due to my kidneys. Everyone is different.
When your body is in distress like getting Covid, an infection, surgery etc. your Factor VIII will get very high. You are extremely high risk for getting a clot.
Now with that being said…I had nothing happening to me and I was just watching tv with my legs up in a recliner and I got one in the small vessel of my ankle. Hurt soooo bad and went to ER. Whole leg turned red. Took blood thinners and it resolved itself. So it can happen at any time. I carry my Eliquis with me everywhere I go just in case.
I get on with my everyday life but I am more cautious now.
I’m not a doctor and I’m always trying to learn more about this High Factor VIII. I know that we have these different factors that make up or proteins in our blood and our Factor VIII has a mutation which is genetically handed down in our dna from one parent which throws off some of the sequencing in the factors in our blood. Which makes our blood clot.
I am now looking into info on Protein C and Protein S in the blood. From what I have read these proteins have something to do with High Factor VIII. It keeps coming up on things I read on High Factor VIII. So I’m going to have my hematologist do some blood work on me regarding this to see if those proteins are high or not. I will keep searching on this High Factor VIII.
I was in the ER last Friday for neck & ear pain which is a blood clot form my neck port the prior week. My Dr here said it was normal on Wed. went I told him. So on Friday I emailed my DR at the Mayo he call imminently and said to get to hospital, thank god for him. So I'm on eliquis also, I too have kidney issues. Yesterday I seen my nurse practitioner and she order the test for blood clot disorder that my sister was recently diagnosed with . I have MGRS monoclonal gammopathy with renal significates. I've been on chemo weekly since November, 6 treats to go and had a stem cell collection this month for a later date if needed.
Thank u
Hi Heidi. It is now 2023, so unsure if you still visit this page, but I too have had two blood clots and have elevated Factor 8. I was wondering if you found any good articles regarding this clotting disorder.
Thank you, Chari
I too have elevated factor 8. I currently have my second blood clot, first 5 years ago. Both clots unprovoked. It is so difficult to find info on this disorder. Anything you might have found?
Thank you, Chari
Heidi, which anticoagulant are you taking?
I originally was on Eliquis 5mg 2 times a day. I now am on Eliquis 2.5mg 2 times a day (that is considered a maintenance dose). All good still. Were you in blood thinners when you got your second clots?
You will find a lot of information on this website. https://www.stoptheclot.org/