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.

@garlamba, @heidi2020, and any others who have has any of these types of blood disorders, did you experience any other symptoms, or additional medical issues? My daughter is very ill, and just got out of the hospital because she had 2 blood clots in one leg, and 1 clot in each lung. Prior to her frming these blood clots, she's also had a history of frequent nose bleeds, brusing easily, and amenorrhea. Her hematologist acted as though he wasn't concerned about a blood disease as long as myself, her dad, or her grandparents didn't have one. But, it sounds like it could also be possible for me, and/or her dad to have had the gene, never known, and it have been passed along to her, is that corrrect? I'm considering being tested to be sure I didn't pass something like this to her, and then her possibly having passed it to the grandbabies too. As ill as she is, it's possible hers isn't hereditary, and is related to her medical issues, which I read that some types can be.It didn't sound like the hematologist was even going to test for any type of blood disease because none of her immediately family ever had an issue with one? She also has 3 children-all her pregnancies went well, except during her 2nd one her placenta tore. (but, thankfully, he made it, and is now a strong healthy 6 yr old). I, myself, was a very, very, high risk pregancy, and after years of trying to get pregnant my daughter is my little miracle baby. Any other info or suggestions you can offer is appreciated. Thank you.

REPLY
@crackerjack

@garlamba, @heidi2020, and any others who have has any of these types of blood disorders, did you experience any other symptoms, or additional medical issues? My daughter is very ill, and just got out of the hospital because she had 2 blood clots in one leg, and 1 clot in each lung. Prior to her frming these blood clots, she's also had a history of frequent nose bleeds, brusing easily, and amenorrhea. Her hematologist acted as though he wasn't concerned about a blood disease as long as myself, her dad, or her grandparents didn't have one. But, it sounds like it could also be possible for me, and/or her dad to have had the gene, never known, and it have been passed along to her, is that corrrect? I'm considering being tested to be sure I didn't pass something like this to her, and then her possibly having passed it to the grandbabies too. As ill as she is, it's possible hers isn't hereditary, and is related to her medical issues, which I read that some types can be.It didn't sound like the hematologist was even going to test for any type of blood disease because none of her immediately family ever had an issue with one? She also has 3 children-all her pregnancies went well, except during her 2nd one her placenta tore. (but, thankfully, he made it, and is now a strong healthy 6 yr old). I, myself, was a very, very, high risk pregancy, and after years of trying to get pregnant my daughter is my little miracle baby. Any other info or suggestions you can offer is appreciated. Thank you.

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Why aren’t they testing her to determine what her blood disorder is, so she can be prepared after subsequent pregnancies
or surgery?

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@crackerjack

@garlamba, @heidi2020, and any others who have has any of these types of blood disorders, did you experience any other symptoms, or additional medical issues? My daughter is very ill, and just got out of the hospital because she had 2 blood clots in one leg, and 1 clot in each lung. Prior to her frming these blood clots, she's also had a history of frequent nose bleeds, brusing easily, and amenorrhea. Her hematologist acted as though he wasn't concerned about a blood disease as long as myself, her dad, or her grandparents didn't have one. But, it sounds like it could also be possible for me, and/or her dad to have had the gene, never known, and it have been passed along to her, is that corrrect? I'm considering being tested to be sure I didn't pass something like this to her, and then her possibly having passed it to the grandbabies too. As ill as she is, it's possible hers isn't hereditary, and is related to her medical issues, which I read that some types can be.It didn't sound like the hematologist was even going to test for any type of blood disease because none of her immediately family ever had an issue with one? She also has 3 children-all her pregnancies went well, except during her 2nd one her placenta tore. (but, thankfully, he made it, and is now a strong healthy 6 yr old). I, myself, was a very, very, high risk pregancy, and after years of trying to get pregnant my daughter is my little miracle baby. Any other info or suggestions you can offer is appreciated. Thank you.

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@crackerjack i had only shortness of breath the first time. Nothing else. (They took me off the pill as they thought that was why the first time because I did not have any known risk factors. At that time I guess they didn't have the test for HIGH Factor VIII, they did run all of the other genetic ones at that time , but all were negative. So I walked around for 10 plus years after on no preventative meds. Then the second time I had terrible pain in my leg behind my knee but thought it was just strained. But then I had trouble breathing the next day. But I had zero of the "normal" symptoms. And since I had asthma I almost didn't go both times. I did however bruise easily and they thought it was or related to my low vitamin D. But that's the only other thing I had.
So, no one in my family had any known issues either. But here I was with only HIGH factor VIII but none of the other blood disorders once I was tested. Yes it's from one of my 2 parents. I unfortunately have passed it on to my kids. At least they know, so when my daughter has a baby they'll watch her like a hawk afterwards especially. Both are being monitored and of course if either have injuries or surgery they will be extra monitored and preventative measures may be used.
My father has already passed away and only my mother is still alive. She refuses to get the testing (no clue why I'm sure Medicare would pay) and none of my other family members have decided to get tested either. I cannot understand it personally. I'm presuming out of a large family some also have the gene.
So I HIGHLY recommend getting tested. We would not have known otherwise as all other tests were negative. I now am on blood thinners fir the rest of my life and have my levels tested regularly by my hematologist.
Wishing you the best!! And your daughter especially too.

REPLY
@heidi2020

@crackerjack i had only shortness of breath the first time. Nothing else. (They took me off the pill as they thought that was why the first time because I did not have any known risk factors. At that time I guess they didn't have the test for HIGH Factor VIII, they did run all of the other genetic ones at that time , but all were negative. So I walked around for 10 plus years after on no preventative meds. Then the second time I had terrible pain in my leg behind my knee but thought it was just strained. But then I had trouble breathing the next day. But I had zero of the "normal" symptoms. And since I had asthma I almost didn't go both times. I did however bruise easily and they thought it was or related to my low vitamin D. But that's the only other thing I had.
So, no one in my family had any known issues either. But here I was with only HIGH factor VIII but none of the other blood disorders once I was tested. Yes it's from one of my 2 parents. I unfortunately have passed it on to my kids. At least they know, so when my daughter has a baby they'll watch her like a hawk afterwards especially. Both are being monitored and of course if either have injuries or surgery they will be extra monitored and preventative measures may be used.
My father has already passed away and only my mother is still alive. She refuses to get the testing (no clue why I'm sure Medicare would pay) and none of my other family members have decided to get tested either. I cannot understand it personally. I'm presuming out of a large family some also have the gene.
So I HIGHLY recommend getting tested. We would not have known otherwise as all other tests were negative. I now am on blood thinners fir the rest of my life and have my levels tested regularly by my hematologist.
Wishing you the best!! And your daughter especially too.

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@heidi2020 , @moo1.
@ heidi2020-Thank you for all the excellent info. ou are so right on there being little info out there on High Factor VIII. I'm sorry your family won't get tested-I think a lot of people don't get tested because they are afraid that they'll have an issue with their insurance companies (especially, if they have it)-but since the laws changed and you can't be denied insurance because of preexisting conditions, etc. I wouldn't think that should be an issue any longer?

Should I be tested for both Factor VIII, and Factor V?

@moo Right now she is on blood thinners for at least the next year, and it's to my understanding that it's best to not be tested while on them? She is also currently in FTT from a medical condition that began a year ago, which has now triggered another autoimmune issue that is currently in full attack mode. So her doc may think the clots
were related to everything else she has going on since no one else had issues, and they very possibly could have been. That's why I thought it might be a good idea for me to be tested, just in case. Right now they're focusing on reversing the other problems she has by trying to keep her vits, electrolytyles, fluids, etc. as "normal" as possible, as often as possible, to prevent further damage, decline, or, God forbide, worse. They're also using biologics, iron infusions, oral meds-she takes daily oral chemo too as that's the only thing that in the past has helped the other severe medical issue she has go into remission. Her other issues causes her to not be a candidate for a feeding tube , so they're hoping that all the treatments combined will help get her back out of FTT, get her vits, mineral, fluids, etc back to a more consistently normal range, and allow her to eat without all the N/V she's been having. (She still has some test, and biopsys results out too from her hospital stay the week before).

The clots are just one more major set back in a large list of several other severe issues that she's already battling with. Were the clots Factor related, or medical condition related?- I don't know, but some of the possible Factor signs and symptoms might have been there long before her FTT, and blood clots-ie) the nose bleeds, easily bruised, placental abruption on pregancy #2, etc., so if it is Factor related we certainly need to know for sure for both her, and the grandbabies sakes. I hope you both have a wonderful rest of your day, and thank you.

REPLY
@crackerjack

@heidi2020 , @moo1.
@ heidi2020-Thank you for all the excellent info. ou are so right on there being little info out there on High Factor VIII. I'm sorry your family won't get tested-I think a lot of people don't get tested because they are afraid that they'll have an issue with their insurance companies (especially, if they have it)-but since the laws changed and you can't be denied insurance because of preexisting conditions, etc. I wouldn't think that should be an issue any longer?

Should I be tested for both Factor VIII, and Factor V?

@moo Right now she is on blood thinners for at least the next year, and it's to my understanding that it's best to not be tested while on them? She is also currently in FTT from a medical condition that began a year ago, which has now triggered another autoimmune issue that is currently in full attack mode. So her doc may think the clots
were related to everything else she has going on since no one else had issues, and they very possibly could have been. That's why I thought it might be a good idea for me to be tested, just in case. Right now they're focusing on reversing the other problems she has by trying to keep her vits, electrolytyles, fluids, etc. as "normal" as possible, as often as possible, to prevent further damage, decline, or, God forbide, worse. They're also using biologics, iron infusions, oral meds-she takes daily oral chemo too as that's the only thing that in the past has helped the other severe medical issue she has go into remission. Her other issues causes her to not be a candidate for a feeding tube , so they're hoping that all the treatments combined will help get her back out of FTT, get her vits, mineral, fluids, etc back to a more consistently normal range, and allow her to eat without all the N/V she's been having. (She still has some test, and biopsys results out too from her hospital stay the week before).

The clots are just one more major set back in a large list of several other severe issues that she's already battling with. Were the clots Factor related, or medical condition related?- I don't know, but some of the possible Factor signs and symptoms might have been there long before her FTT, and blood clots-ie) the nose bleeds, easily bruised, placental abruption on pregancy #2, etc., so if it is Factor related we certainly need to know for sure for both her, and the grandbabies sakes. I hope you both have a wonderful rest of your day, and thank you.

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@crackerjack ask your dr which tests and perhaps your daughters hematologist could advise also which ones based upon her condition. There are a bunch of different ones besides Factor VIII and Factor V. I would think they'd want to run the whole panel. I have no idea if your insurance will pay or not, you'd have to check with them. Yes, I think my family doesn't want the tests due to costs, I think my mom doesn't want to know as she'd feel guilty (I understand that some as a mother myself, but Id rather my kids know to help keep them safe).
Information is indeed sparse for Factor VIII. I have found some additional resources and also another group like this on another site as well https://www.stoptheclot.org/.
I hope your daughter is ok. Sometimes we feel so helpless and it's hard. Please keep us posted.

REPLY
@heidi2020

@crackerjack ask your dr which tests and perhaps your daughters hematologist could advise also which ones based upon her condition. There are a bunch of different ones besides Factor VIII and Factor V. I would think they'd want to run the whole panel. I have no idea if your insurance will pay or not, you'd have to check with them. Yes, I think my family doesn't want the tests due to costs, I think my mom doesn't want to know as she'd feel guilty (I understand that some as a mother myself, but Id rather my kids know to help keep them safe).
Information is indeed sparse for Factor VIII. I have found some additional resources and also another group like this on another site as well https://www.stoptheclot.org/.
I hope your daughter is ok. Sometimes we feel so helpless and it's hard. Please keep us posted.

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@heidi2020 Thank you for the info and the link. I'm like you I'll do what I have to to warn, protect and heal my child. Helpless and pretty much useless is how I feel right now. I'm actually disabled myself, but was an RN for 25+ years.

This is something she has battled since she was diagnosed at age 9, (she has severe crohn's disease from her throat to her rectum and the doctors all say it is the worst case they've ever seen), and this last severe flare (that began a year ago), has contributed to all of this. Her being so ill and in so much pain and deteriorating so quickly, us not having all the answers because there are so many things going on inside her little body right now, treatments being hit and miss some making her feel better, some making her feel worse, and me, personally, not knowing how to medically help her get well, is all just horrible.

Right now I'm relying on tons of prayers, and more prayers that the specialists have the knowledge that will help her get well again, get and keep her in remission, so she can do all the things she's suppose to be doing. We want our babies to be well, and we will do anything we have to get and keep them well. Thank you again, hun. I hope you have a wonderful rest of your night.

REPLY
@crackerjack

@garlamba, @heidi2020, and any others who have has any of these types of blood disorders, did you experience any other symptoms, or additional medical issues? My daughter is very ill, and just got out of the hospital because she had 2 blood clots in one leg, and 1 clot in each lung. Prior to her frming these blood clots, she's also had a history of frequent nose bleeds, brusing easily, and amenorrhea. Her hematologist acted as though he wasn't concerned about a blood disease as long as myself, her dad, or her grandparents didn't have one. But, it sounds like it could also be possible for me, and/or her dad to have had the gene, never known, and it have been passed along to her, is that corrrect? I'm considering being tested to be sure I didn't pass something like this to her, and then her possibly having passed it to the grandbabies too. As ill as she is, it's possible hers isn't hereditary, and is related to her medical issues, which I read that some types can be.It didn't sound like the hematologist was even going to test for any type of blood disease because none of her immediately family ever had an issue with one? She also has 3 children-all her pregnancies went well, except during her 2nd one her placenta tore. (but, thankfully, he made it, and is now a strong healthy 6 yr old). I, myself, was a very, very, high risk pregancy, and after years of trying to get pregnant my daughter is my little miracle baby. Any other info or suggestions you can offer is appreciated. Thank you.

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I am so very sorry to hear about your daughter's illness. Praying for healing and better days ahead. As far as other symptoms, I can only recall my daughter having occasional nosebleeds over the years growing up. Early during her pregnancy, she had elevated cardiolipin antibodies, which indicated a possible issue with clotting and she was referred to a hematologist who diagnosed the elevated factor VIII. She has a homozygous (two copies) of the mthfr mutation c677t. Mthfr stands for methylene tetrahyrofolate reductase c677t; an enzyme involved in folate metabolism. After delivery of a healthy baby girl last September, she stayed on lovenox for several weeks. She has since followed up with the hematologist twice and her Factor VIII levels have been normal x two. He is therefore only keeping her on daily baby aspirin. As far as family genetic testing, it was recommended by primary care that her siblings be tested and that I get tested if I ever plan a major elective surgery. I have never had any clotting issues in my 64 years. Hope some of this is helpful.

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Forgot to mention that my daughter did receive the Covid 19 vaccine because she is a healthcare practioner, Mederma, both shots without incident.

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@garlamba

Forgot to mention that my daughter did receive the Covid 19 vaccine because she is a healthcare practioner, Mederma, both shots without incident.

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@garlamba Thank you for the prayers and the info.

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@garlamba I'm glad your daughter had the vaccine without incidence. I have now had my first shot (Pfizer) and I'm thankful I did not have an anaphylactic event. Shot number two at the beginning of April. Fingers crossed.

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@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.

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I was just diagnosed with factor 8 today I’m devastated

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@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.

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also from what I found it doesn’t look like it’s as rare as we may think this article says it’s found in 11% of the adult population

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