Since I am writing to you (and not my daughter) I'm trying to piece together everything as I've been with her throughout all of it. She had a cryoptogenic stroke (ischemic) where the specific cause isn't found after extensive medical evaluation. Stroke of unknown origin. I did my research and found their are five different kinds of ischemic strokes. I don't believe it is paroxysmal artrial fibrillation as she has worn halter monitors at various times and now has an implantable loop recorder. We believe it is not atherosclerosis because she has had numerous CT scans, MRI's and then the transesophageal echocardiogram. It is just so hard to not to worry what happened, will it happen again. Thanks for any information shared. I am looking into stroke specialists now.
@donnacsec
I’m sorry to hear your daughter suffered two strokes at a relatively young age. My first question: were these bleeding strokes called hemorrhagic strokes, or caused by clots traveling from her lungs or elsewhere to her brain? This matters because you can research the cause of the ones she had which occur from different causes which I won’t detail here, but make a big difference.
Factor V Leiden and Prothrombin are two of many factors that are now diagnosed because of genetic testing. In 2002 when I was prepping for hysterectomy surgery, I told the doctor my mother had many clots in her legs that were diagnosed as “phlebitis” following her hysterectomy surgery in the 1960’s at age 46. She had many episodes of phlebitis before she died. I was concerned that would happen to me so I mentioned it to the surgeon. He said we could send a blood sample for genetic testing which seemed miraculous at the time. Results showed I carried two blood mutations that both are factors that foster/cause clotting: Factor V Leiden and Prothrombin ( I believe is also called Factor 2.)
It is known that estrogen patches and other menopause hormone drugs that include estrogen can cause clotting. So, I was advised NOT to go that route. I didn’t.
Flash forward, after I fell on black ice and broke the large upper arm bone called the humerus bone straight through. During recovery I developed a blood clot in the upper elbow where the arm bends. It caused my hand to swell after the normal swelling after a break receded. My orthopedic doctor’s PA was suspicious and doubted it was a clot because that typically does not happen as a bone heals. I consulted my primary doc who sent me for a scan and yes, it was a blood clot. He put me on xarelto first but that didn’t agree with me. I then took Elloquis which I tolerated well. He kept me on it 3 months then took me off the drug.
About 2 years later the episode I described in the first message occurred. The Pulmonary Embolisms (PE) were everywhere in both lungs and in the saddle in between the lungs. I had no pain before it, just an episode of feeling “out of sorts” the night before, and was a bit more winded walking my dog up a hill I walk up regularly with no problem. I went to bed early, woke up to pee a few hours later and got dizzy standing up from the commode, and felt I may throw up. I woke up my husband to tell him I was feeling sick and to keep an eye on me. In the morning I went to pee and this time was so woozy standing up I grabbed the doorframe telling myself “I’m ok, I’m okay” but apparently then fainted into the hallway. That never happened so I thought I should go to the ER. Good thing… I would have probably died that morning if I hadn’t been diagnosed and admitted to the ICU. The pulmonologist said I should have stayed on Elloquis after the last clot… and I’m now on it for life.
Strokes run in my family, so I’m super careful about my diet, exercise and drugs I take.
@bmoregrl
Thank you for sharing...For about two years my daughter complained about the feeling of not catching her breath, her heart beating rapidly, and a feeling of not just "right". Three different times she was taken to the ER by ambulance but each time they could find nothing wrong and sent her home thinking it was anxiety. This continued. She saw a cardiologist who did some testing found nothing. She saw a hematologist who monitored her because she had an elevated
D-Dimer. She participated in a COVID clinical test because they thought maybe COVID has caused her symptoms. She was referred to specialist, had scans of her legs and lungs. Had EEG's, EKG's. After the strokes she was diagnosed with Factor V Lieden. All the doctors believed this had nothing to do with the strokes. I remain cautiously concerned especially since she is a single mom of an 8 year old. The strokes are called something but cannot think of the name right now. It means...strokes without any known cause. It was after her stroke, that the neurologist saw evidence of a prior stroke. One in the balance center of her brain and the other in the language section. She was at work (as a teacher) and was taken by ambulance to the hospital. She was sent to the University of Pennsylvania hematology and was actually told there was nothing else they could test for. She has a trans-esophegeal scan of the back of her heart at Mt. Sinai Hospital in New York City. You name it, we did it! I still wonder if there is somewhere more to go....like to the Mayo Clinic.
@bmoregrl
My daughter (45) has had two strokes. After numerous tests, there is no reason why these occurred. She is on a daily low dose aspirin regime only. However, the only thing that has come up was that she had Factor V Lieden. She was told it is an inherited gene from one of her parents. She has also been told this has no correlation to her having two strokes. I've read that Factor V Leiden is some related to blood clotting. She has confidence in her hematologist but I still wonder about this. Can you share what you know about Factor V Leiden? What is the correlation to being female and no estrogen? I do not know what Prothrombin mutations are.
She has had no issues for the past two years, however concern is always present. She remains under the care of a cardiologist,hematologist and no longer sees the neurologist. She also has an implanted device which monitors her heart. There is no reason for the strokes that can be found.
@donnacsec
I’m sorry to hear your daughter suffered two strokes at a relatively young age. My first question: were these bleeding strokes called hemorrhagic strokes, or caused by clots traveling from her lungs or elsewhere to her brain? This matters because you can research the cause of the ones she had which occur from different causes which I won’t detail here, but make a big difference.
Factor V Leiden and Prothrombin are two of many factors that are now diagnosed because of genetic testing. In 2002 when I was prepping for hysterectomy surgery, I told the doctor my mother had many clots in her legs that were diagnosed as “phlebitis” following her hysterectomy surgery in the 1960’s at age 46. She had many episodes of phlebitis before she died. I was concerned that would happen to me so I mentioned it to the surgeon. He said we could send a blood sample for genetic testing which seemed miraculous at the time. Results showed I carried two blood mutations that both are factors that foster/cause clotting: Factor V Leiden and Prothrombin ( I believe is also called Factor 2.)
It is known that estrogen patches and other menopause hormone drugs that include estrogen can cause clotting. So, I was advised NOT to go that route. I didn’t.
Flash forward, after I fell on black ice and broke the large upper arm bone called the humerus bone straight through. During recovery I developed a blood clot in the upper elbow where the arm bends. It caused my hand to swell after the normal swelling after a break receded. My orthopedic doctor’s PA was suspicious and doubted it was a clot because that typically does not happen as a bone heals. I consulted my primary doc who sent me for a scan and yes, it was a blood clot. He put me on xarelto first but that didn’t agree with me. I then took Elloquis which I tolerated well. He kept me on it 3 months then took me off the drug.
About 2 years later the episode I described in the first message occurred. The Pulmonary Embolisms (PE) were everywhere in both lungs and in the saddle in between the lungs. I had no pain before it, just an episode of feeling “out of sorts” the night before, and was a bit more winded walking my dog up a hill I walk up regularly with no problem. I went to bed early, woke up to pee a few hours later and got dizzy standing up from the commode, and felt I may throw up. I woke up my husband to tell him I was feeling sick and to keep an eye on me. In the morning I went to pee and this time was so woozy standing up I grabbed the doorframe telling myself “I’m ok, I’m okay” but apparently then fainted into the hallway. That never happened so I thought I should go to the ER. Good thing… I would have probably died that morning if I hadn’t been diagnosed and admitted to the ICU. The pulmonologist said I should have stayed on Elloquis after the last clot… and I’m now on it for life.
Strokes run in my family, so I’m super careful about my diet, exercise and drugs I take.
I have both Factor V Leiden and Prothrombin mutations (Factor 2 I just read in here.)
In July 2020 I fainted at home after a night of nausea and dizziness and assumed it was a virus. The fainting alerted me to take it more seriously and in the ER discovered PE in both lungs and the saddle in between. It was life and death treatment in the ICU and I lived through it a week in the hospital. If I did not faint I likely would have died at home that day. Whew!
I have been on Elloquis 2x/day ever since. Only recently before a surgery did I consult a hematologist because the surgeon requested and it confirmed I was still on the correct dose.
You have to be careful before any surgery and always put this mutation status on health intake forms with new medical caregivers, and bring it to their attention.
I finally got a wrist band that links online to my health history in case of emergency care. I learned recently that if you are under threat of bleeding from an accident there is a drug emergency docs can administer to reverse the blood thinning temporarily- good to know as long as they know.
One brother also inherited Factor V but it seems I’m the only double blessed sibling. I’m the only female and no estrogen patches for me.
I know strokes are common in my family so I’m on a plant based whole food diet now and lowered my cholesterol risk 150 points from that alone. I take a triglyceride lowering drug also called Trilipix that brought that number way down. Good cholesterol was and is great.
I don’t smoke. I’m in my 70’s… retired and active. I do what I can and so far, so good.
@bmoregrl
My daughter (45) has had two strokes. After numerous tests, there is no reason why these occurred. She is on a daily low dose aspirin regime only. However, the only thing that has come up was that she had Factor V Lieden. She was told it is an inherited gene from one of her parents. She has also been told this has no correlation to her having two strokes. I've read that Factor V Leiden is some related to blood clotting. She has confidence in her hematologist but I still wonder about this. Can you share what you know about Factor V Leiden? What is the correlation to being female and no estrogen? I do not know what Prothrombin mutations are.
She has had no issues for the past two years, however concern is always present. She remains under the care of a cardiologist,hematologist and no longer sees the neurologist. She also has an implanted device which monitors her heart. There is no reason for the strokes that can be found.
I have both Factor V Leiden and Prothrombin mutations (Factor 2 I just read in here.)
In July 2020 I fainted at home after a night of nausea and dizziness and assumed it was a virus. The fainting alerted me to take it more seriously and in the ER discovered PE in both lungs and the saddle in between. It was life and death treatment in the ICU and I lived through it a week in the hospital. If I did not faint I likely would have died at home that day. Whew!
I have been on Elloquis 2x/day ever since. Only recently before a surgery did I consult a hematologist because the surgeon requested and it confirmed I was still on the correct dose.
You have to be careful before any surgery and always put this mutation status on health intake forms with new medical caregivers, and bring it to their attention.
I finally got a wrist band that links online to my health history in case of emergency care. I learned recently that if you are under threat of bleeding from an accident there is a drug emergency docs can administer to reverse the blood thinning temporarily- good to know as long as they know.
One brother also inherited Factor V but it seems I’m the only double blessed sibling. I’m the only female and no estrogen patches for me.
I know strokes are common in my family so I’m on a plant based whole food diet now and lowered my cholesterol risk 150 points from that alone. I take a triglyceride lowering drug also called Trilipix that brought that number way down. Good cholesterol was and is great.
I don’t smoke. I’m in my 70’s… retired and active. I do what I can and so far, so good.
@swalex Thank you for sharing this info. I've only recently found out that my grandfather and my father have this disorder. My father was recently hospitalized with both PEs and DVTs. Although this isn't the first time, this was the first time that he was treated based on the disorder. We found out that my (deceased) grandfather had it this past Nov (25) based on testing that my aunt did. My father is 82. I have concerns for myself as a woman seeing that estrogen increases risks. Also because I have two daughters and my husband also has European ancestry (although I don't know where from. Mine is German)
@ybreyn411
Although von Willebrand disease (VWD) is one of the rarest diagnosed conditions, its symptoms are relatively common among Europeans. Therefore, I have gathered specific information on the topic.
@lizkc56
Hi Liz,
I have both Factor II and Factor V Leiden. The main precautions include avoiding estrogen (such as in birth control or hormone replacement therapy), tobacco use, and prolonged immobility. It's also important to follow a heart-healthy diet by limiting saturated fats, staying well-hydrated, and being mindful of vitamin K intake—especially K2 and leafy greens—if you're taking warfarin.
You should also be cautious with the use of ibuprofen (a type of NSAID), as it can affect platelet function and increase the risk of bleeding—especially at higher doses or with prolonged use.
You might want to speak with your doctor about regular ultrasounds to monitor for blood clots, as well as any specific dietary guidance.
Also, your daughters should see a hematologist and request a complete von Willebrand Factor (VWF) test.
@swalex Thank you for sharing this info. I've only recently found out that my grandfather and my father have this disorder. My father was recently hospitalized with both PEs and DVTs. Although this isn't the first time, this was the first time that he was treated based on the disorder. We found out that my (deceased) grandfather had it this past Nov (25) based on testing that my aunt did. My father is 82. I have concerns for myself as a woman seeing that estrogen increases risks. Also because I have two daughters and my husband also has European ancestry (although I don't know where from. Mine is German)
Hi all,
I have Factor V Leiden as well. I have not had any issues but my late mother discovered that she had the mutation when she developed blood clots in her legs. I was tested and my doctor confirmed that I have the genetic mutation when I was about 40 years old. I informed both my daughters concerning the mutation but do not know if they inherited the gene. Any precautions or suggestions on supplements to prevent potential blood clots? I will be 70 in June.
Thanks
Liz
@lizkc56
Hi Liz,
I have both Factor II and Factor V Leiden. The main precautions include avoiding estrogen (such as in birth control or hormone replacement therapy), tobacco use, and prolonged immobility. It's also important to follow a heart-healthy diet by limiting saturated fats, staying well-hydrated, and being mindful of vitamin K intake—especially K2 and leafy greens—if you're taking warfarin.
You should also be cautious with the use of ibuprofen (a type of NSAID), as it can affect platelet function and increase the risk of bleeding—especially at higher doses or with prolonged use.
You might want to speak with your doctor about regular ultrasounds to monitor for blood clots, as well as any specific dietary guidance.
Also, your daughters should see a hematologist and request a complete von Willebrand Factor (VWF) test.
Hi all,
I have Factor V Leiden as well. I have not had any issues but my late mother discovered that she had the mutation when she developed blood clots in her legs. I was tested and my doctor confirmed that I have the genetic mutation when I was about 40 years old. I informed both my daughters concerning the mutation but do not know if they inherited the gene. Any precautions or suggestions on supplements to prevent potential blood clots? I will be 70 in June.
Thanks
Liz
Connect
Connect
Like
Helpful
Hug
Since I am writing to you (and not my daughter) I'm trying to piece together everything as I've been with her throughout all of it. She had a cryoptogenic stroke (ischemic) where the specific cause isn't found after extensive medical evaluation. Stroke of unknown origin. I did my research and found their are five different kinds of ischemic strokes. I don't believe it is paroxysmal artrial fibrillation as she has worn halter monitors at various times and now has an implantable loop recorder. We believe it is not atherosclerosis because she has had numerous CT scans, MRI's and then the transesophageal echocardiogram. It is just so hard to not to worry what happened, will it happen again. Thanks for any information shared. I am looking into stroke specialists now.
-
Like -
Helpful -
Hug
1 ReactionHi - you did not tell me if the strokes were clot based or bleeding based.
Please shoe me you know. If not clot based then Factor V Leiden may indeed not be the cause.
Look for a Stroke specialist consultant once you know this. Of course I’m curious too - please reply.
Jane
@bmoregrl
Thank you for sharing...For about two years my daughter complained about the feeling of not catching her breath, her heart beating rapidly, and a feeling of not just "right". Three different times she was taken to the ER by ambulance but each time they could find nothing wrong and sent her home thinking it was anxiety. This continued. She saw a cardiologist who did some testing found nothing. She saw a hematologist who monitored her because she had an elevated
D-Dimer. She participated in a COVID clinical test because they thought maybe COVID has caused her symptoms. She was referred to specialist, had scans of her legs and lungs. Had EEG's, EKG's. After the strokes she was diagnosed with Factor V Lieden. All the doctors believed this had nothing to do with the strokes. I remain cautiously concerned especially since she is a single mom of an 8 year old. The strokes are called something but cannot think of the name right now. It means...strokes without any known cause. It was after her stroke, that the neurologist saw evidence of a prior stroke. One in the balance center of her brain and the other in the language section. She was at work (as a teacher) and was taken by ambulance to the hospital. She was sent to the University of Pennsylvania hematology and was actually told there was nothing else they could test for. She has a trans-esophegeal scan of the back of her heart at Mt. Sinai Hospital in New York City. You name it, we did it! I still wonder if there is somewhere more to go....like to the Mayo Clinic.
@donnacsec
I’m sorry to hear your daughter suffered two strokes at a relatively young age. My first question: were these bleeding strokes called hemorrhagic strokes, or caused by clots traveling from her lungs or elsewhere to her brain? This matters because you can research the cause of the ones she had which occur from different causes which I won’t detail here, but make a big difference.
Factor V Leiden and Prothrombin are two of many factors that are now diagnosed because of genetic testing. In 2002 when I was prepping for hysterectomy surgery, I told the doctor my mother had many clots in her legs that were diagnosed as “phlebitis” following her hysterectomy surgery in the 1960’s at age 46. She had many episodes of phlebitis before she died. I was concerned that would happen to me so I mentioned it to the surgeon. He said we could send a blood sample for genetic testing which seemed miraculous at the time. Results showed I carried two blood mutations that both are factors that foster/cause clotting: Factor V Leiden and Prothrombin ( I believe is also called Factor 2.)
It is known that estrogen patches and other menopause hormone drugs that include estrogen can cause clotting. So, I was advised NOT to go that route. I didn’t.
Flash forward, after I fell on black ice and broke the large upper arm bone called the humerus bone straight through. During recovery I developed a blood clot in the upper elbow where the arm bends. It caused my hand to swell after the normal swelling after a break receded. My orthopedic doctor’s PA was suspicious and doubted it was a clot because that typically does not happen as a bone heals. I consulted my primary doc who sent me for a scan and yes, it was a blood clot. He put me on xarelto first but that didn’t agree with me. I then took Elloquis which I tolerated well. He kept me on it 3 months then took me off the drug.
About 2 years later the episode I described in the first message occurred. The Pulmonary Embolisms (PE) were everywhere in both lungs and in the saddle in between the lungs. I had no pain before it, just an episode of feeling “out of sorts” the night before, and was a bit more winded walking my dog up a hill I walk up regularly with no problem. I went to bed early, woke up to pee a few hours later and got dizzy standing up from the commode, and felt I may throw up. I woke up my husband to tell him I was feeling sick and to keep an eye on me. In the morning I went to pee and this time was so woozy standing up I grabbed the doorframe telling myself “I’m ok, I’m okay” but apparently then fainted into the hallway. That never happened so I thought I should go to the ER. Good thing… I would have probably died that morning if I hadn’t been diagnosed and admitted to the ICU. The pulmonologist said I should have stayed on Elloquis after the last clot… and I’m now on it for life.
Strokes run in my family, so I’m super careful about my diet, exercise and drugs I take.
I hope this is helpful.
Be well,
Jane
@bmoregrl
My daughter (45) has had two strokes. After numerous tests, there is no reason why these occurred. She is on a daily low dose aspirin regime only. However, the only thing that has come up was that she had Factor V Lieden. She was told it is an inherited gene from one of her parents. She has also been told this has no correlation to her having two strokes. I've read that Factor V Leiden is some related to blood clotting. She has confidence in her hematologist but I still wonder about this. Can you share what you know about Factor V Leiden? What is the correlation to being female and no estrogen? I do not know what Prothrombin mutations are.
She has had no issues for the past two years, however concern is always present. She remains under the care of a cardiologist,hematologist and no longer sees the neurologist. She also has an implanted device which monitors her heart. There is no reason for the strokes that can be found.
I have both Factor V Leiden and Prothrombin mutations (Factor 2 I just read in here.)
In July 2020 I fainted at home after a night of nausea and dizziness and assumed it was a virus. The fainting alerted me to take it more seriously and in the ER discovered PE in both lungs and the saddle in between. It was life and death treatment in the ICU and I lived through it a week in the hospital. If I did not faint I likely would have died at home that day. Whew!
I have been on Elloquis 2x/day ever since. Only recently before a surgery did I consult a hematologist because the surgeon requested and it confirmed I was still on the correct dose.
You have to be careful before any surgery and always put this mutation status on health intake forms with new medical caregivers, and bring it to their attention.
I finally got a wrist band that links online to my health history in case of emergency care. I learned recently that if you are under threat of bleeding from an accident there is a drug emergency docs can administer to reverse the blood thinning temporarily- good to know as long as they know.
One brother also inherited Factor V but it seems I’m the only double blessed sibling. I’m the only female and no estrogen patches for me.
I know strokes are common in my family so I’m on a plant based whole food diet now and lowered my cholesterol risk 150 points from that alone. I take a triglyceride lowering drug also called Trilipix that brought that number way down. Good cholesterol was and is great.
I don’t smoke. I’m in my 70’s… retired and active. I do what I can and so far, so good.
Good luck!
-
Like -
Helpful -
Hug
2 Reactions@ybreyn411
Although von Willebrand disease (VWD) is one of the rarest diagnosed conditions, its symptoms are relatively common among Europeans. Therefore, I have gathered specific information on the topic.
Understanding von Willebrand Factor (VWF), Factor II, and Factor V Leiden Mutations: Risks, Management, and Medication Considerations
https://swaresearch.blogspot.com/2026/01/understanding-von-willebrand-factor-vwf.html
-
Like -
Helpful -
Hug
1 Reaction@swalex Thank you for sharing this info. I've only recently found out that my grandfather and my father have this disorder. My father was recently hospitalized with both PEs and DVTs. Although this isn't the first time, this was the first time that he was treated based on the disorder. We found out that my (deceased) grandfather had it this past Nov (25) based on testing that my aunt did. My father is 82. I have concerns for myself as a woman seeing that estrogen increases risks. Also because I have two daughters and my husband also has European ancestry (although I don't know where from. Mine is German)
-
Like -
Helpful -
Hug
1 Reaction@lizkc56
Hi Liz,
I have both Factor II and Factor V Leiden. The main precautions include avoiding estrogen (such as in birth control or hormone replacement therapy), tobacco use, and prolonged immobility. It's also important to follow a heart-healthy diet by limiting saturated fats, staying well-hydrated, and being mindful of vitamin K intake—especially K2 and leafy greens—if you're taking warfarin.
You should also be cautious with the use of ibuprofen (a type of NSAID), as it can affect platelet function and increase the risk of bleeding—especially at higher doses or with prolonged use.
You might want to speak with your doctor about regular ultrasounds to monitor for blood clots, as well as any specific dietary guidance.
Also, your daughters should see a hematologist and request a complete von Willebrand Factor (VWF) test.
-
Like -
Helpful -
Hug
4 ReactionsHi all,
I have Factor V Leiden as well. I have not had any issues but my late mother discovered that she had the mutation when she developed blood clots in her legs. I was tested and my doctor confirmed that I have the genetic mutation when I was about 40 years old. I informed both my daughters concerning the mutation but do not know if they inherited the gene. Any precautions or suggestions on supplements to prevent potential blood clots? I will be 70 in June.
Thanks
Liz