Hi, I am new to this group. My 27 yr old daughter was diagnosed with essential thrombocythemia. (gene disorder factor V). I am even in the nursing field and am totally freaked out about the situation. She has been diagnosed for appr 3 yrs. we had our first problem with a nosebleed that would not stop. she is on anagrelide. I am curious about the warfarin. It has the same effect on the blood as far as lower the platelets, but is it safer?
I'm rambling on but super scared to death......
I've been treated for thrombocytosis since 2011, so I shall consider it ET, even though my hematologist/oncologist has not told me so. The only question in all this time that I have asked him is whether diet can help and his response was a light "no." Other people say that diet can help. My doctor has not said that he has found no signs of leukemia nor any other kind of infection to cause elevated platelets, therefore: it is ET? Some say that ET is a form of blood cancer, but in my experience of understanding, they say that one may live just as long or about as long as a normal lifespan with proper treatment; the danger was said to be a blood clot causing a stroke. I suppose you should join the ET group, also? I have yet to ask my doctor if I have blood factor problems, all that he has told me is JAK positive. I had an Uncle that died of leukemia in about 1992 when I was about 32, but he had an excuse: he, along with the rest of a platoon were ordered to march through a ground zero; it would be interesting to review all of the platoon's medical histories. ET is not as bad as other conditions in longevity, although I am just reading up on factor V Leiden. I am a 63 YO male and I was told that I had "sticky blood" after a plasma donation in about 1984, so I probably could have been diagnosed toward ET in 1984.
Don't be disheartened if you are expecting GrandChildren yet; it makes me wonder whether hemophilia may be combined with factor V Leiden and solve a problem, as opposites sometimes attract. You would desire to communicate with a professional on such a matter, though.
I am new on here. I had Covid-19 in August of 2022, I developed swollen ankles in my left foot and ankle in September. They did a Doppler and found a blood clot behind my left knee. In October my right foot and ankle swelled but no Doppler was ordered. The hematologist ordered blood tests and I have Leiden 5 and another blood mutation. I am on Eliquis. I was 73 and never had a clot before. I was still working full time and had to cut my hours to 25 because of the pain in my feet. I was sitting all day and my feet were painful so cutting my hours helped. No dr has suggested anything except to continue on Eliquis. I’m beginning to wonder if I should see a specialist. I had the first two shots of covid “vaccine” but none after that as I fainted the week after the second shot. That was in 2021.
I'm currently on eloquis for factor V) but recently started DMSO (dymethylsulfoxide) for arthritis. It's a Vascodialater so it enhances blood thinners. Anyone have experience with vascodialators and thinners. I think I'll go back to warfarin and test INR. Is that the only way to know clotability?
I have Factor V and have been on a baby aspirin for years. My problem is every time I have an IV for a procedure, I get a blood clot or sclerosis in that vein. How can I prevent that?
Diagnosed with homozygous Factor V at age 32 with intermittent clotting from my groin to ankle. Likely a 3rd generation birth control increased the event. Stable on home testing Coumadin with no other events. I'm now 53. Now I’m struggling with menopause feminine pain and my doctor says inserting estradiol tablets should be safe. I really need some evidence based research support on this. Tks
Diagnosed with homozygous Factor V at age 32 with intermittent clotting from my groin to ankle. Likely a 3rd generation birth control increased the event. Stable on home testing Coumadin with no other events. I'm now 53. Now I’m struggling with menopause feminine pain and my doctor says inserting estradiol tablets should be safe. I really need some evidence based research support on this. Tks
This sounds like a complicated situation with your susceptibility of blood clots associated with the Factor V condition and taking estrogen/progesterone HRT, which can potentially increase the risk for blood clots.
From my understanding, through personal experience with HRT, is that there is less risk from clotting by using a transdermal estrogen replacement, instead taking oral meds. The oral tablets get processed by the liver where transdermal goes directly into your blood stream. I wonder if that might be a better option for you. But you still may need to balance that out with a micronized progesterone.
I used bio-identical cream going through perimenopause and it made ALL the difference in the world with those horrendous symptoms!
I found a good article that explains it much better than I can! It appears to be a site from Great Britain, but the information is what I wanted to share: https://www.balance-menopause.com/menopause-library/is-hrt-off-limits-if-ive-had-a-blood-clot/
Doctors generally don’t receive a great deal of education on perimenopause or menopause so it’s just easy to prescribe the standard meds. It takes a little more effort to look into this and research healthier options. You might want to talk to a functional medical practitioner to get another option on treatment options. Or, if you can find a Women’s health specialist who is well informed on Perimenopause/menopause eduction and advancements.
Was this suggestion from estradiol with a primary care doctor, hematologist or gynecologist?
This sounds like a complicated situation with your susceptibility of blood clots associated with the Factor V condition and taking estrogen/progesterone HRT, which can potentially increase the risk for blood clots.
From my understanding, through personal experience with HRT, is that there is less risk from clotting by using a transdermal estrogen replacement, instead taking oral meds. The oral tablets get processed by the liver where transdermal goes directly into your blood stream. I wonder if that might be a better option for you. But you still may need to balance that out with a micronized progesterone.
I used bio-identical cream going through perimenopause and it made ALL the difference in the world with those horrendous symptoms!
I found a good article that explains it much better than I can! It appears to be a site from Great Britain, but the information is what I wanted to share: https://www.balance-menopause.com/menopause-library/is-hrt-off-limits-if-ive-had-a-blood-clot/
Doctors generally don’t receive a great deal of education on perimenopause or menopause so it’s just easy to prescribe the standard meds. It takes a little more effort to look into this and research healthier options. You might want to talk to a functional medical practitioner to get another option on treatment options. Or, if you can find a Women’s health specialist who is well informed on Perimenopause/menopause eduction and advancements.
Was this suggestion from estradiol with a primary care doctor, hematologist or gynecologist?
Thank you for your wonderful info. We had a loooooong conversation on this. My MD takes the factor v seriously. I may need to be more clear that the tabs are not oral and are inserts 🙂 So, will this be safe to use???? So scary to me. We are trying to find a safe balance to vaginal pain issues and safety with all this. Thanks for all info and experiences.
Thank you for your wonderful info. We had a loooooong conversation on this. My MD takes the factor v seriously. I may need to be more clear that the tabs are not oral and are inserts 🙂 So, will this be safe to use???? So scary to me. We are trying to find a safe balance to vaginal pain issues and safety with all this. Thanks for all info and experiences.
I hope you find a good resolution. I’m so sorry you’re having vaginal pain with all of this. Why does women’s plumbing have to be so complicated?!? 🙄
I’m way past menopause now but I still follow this menopause doctor I like on FB because my daughter is entering that ‘disturbance in the force’ era. If you’re on FB, here is a link to her page.
The Pause Life by Dr Mary Claire Haver https://www.facebook.com/drmaryclaire
Best of luck to you. I hope you’ll report back with the choice of HRT and if it improved your symptoms. What we share here can really benefit so many others going through the same thing!
@mjhibb, to request an appointment, you can call Mayo Clinic in Arizona or submit the online form to schedule a time to speak with a coordinator. It's really simple to fill out. See more information here: http://mayocl.in/1mtmR63
Hi! I'm a 49yo f with Factor V Lieden. I've had clusters of PE's several different times. I had a severe stroke 3 years ago and 4 wks ago had 6 heart bypasses. Are there any studies I can join to help with research?
I've been treated for thrombocytosis since 2011, so I shall consider it ET, even though my hematologist/oncologist has not told me so. The only question in all this time that I have asked him is whether diet can help and his response was a light "no." Other people say that diet can help. My doctor has not said that he has found no signs of leukemia nor any other kind of infection to cause elevated platelets, therefore: it is ET? Some say that ET is a form of blood cancer, but in my experience of understanding, they say that one may live just as long or about as long as a normal lifespan with proper treatment; the danger was said to be a blood clot causing a stroke. I suppose you should join the ET group, also? I have yet to ask my doctor if I have blood factor problems, all that he has told me is JAK positive. I had an Uncle that died of leukemia in about 1992 when I was about 32, but he had an excuse: he, along with the rest of a platoon were ordered to march through a ground zero; it would be interesting to review all of the platoon's medical histories. ET is not as bad as other conditions in longevity, although I am just reading up on factor V Leiden. I am a 63 YO male and I was told that I had "sticky blood" after a plasma donation in about 1984, so I probably could have been diagnosed toward ET in 1984.
Don't be disheartened if you are expecting GrandChildren yet; it makes me wonder whether hemophilia may be combined with factor V Leiden and solve a problem, as opposites sometimes attract. You would desire to communicate with a professional on such a matter, though.
I am new on here. I had Covid-19 in August of 2022, I developed swollen ankles in my left foot and ankle in September. They did a Doppler and found a blood clot behind my left knee. In October my right foot and ankle swelled but no Doppler was ordered. The hematologist ordered blood tests and I have Leiden 5 and another blood mutation. I am on Eliquis. I was 73 and never had a clot before. I was still working full time and had to cut my hours to 25 because of the pain in my feet. I was sitting all day and my feet were painful so cutting my hours helped. No dr has suggested anything except to continue on Eliquis. I’m beginning to wonder if I should see a specialist. I had the first two shots of covid “vaccine” but none after that as I fainted the week after the second shot. That was in 2021.
I'm currently on eloquis for factor V) but recently started DMSO (dymethylsulfoxide) for arthritis. It's a Vascodialater so it enhances blood thinners. Anyone have experience with vascodialators and thinners. I think I'll go back to warfarin and test INR. Is that the only way to know clotability?
I have Factor V and have been on a baby aspirin for years. My problem is every time I have an IV for a procedure, I get a blood clot or sclerosis in that vein. How can I prevent that?
Diagnosed with homozygous Factor V at age 32 with intermittent clotting from my groin to ankle. Likely a 3rd generation birth control increased the event. Stable on home testing Coumadin with no other events. I'm now 53. Now I’m struggling with menopause feminine pain and my doctor says inserting estradiol tablets should be safe. I really need some evidence based research support on this. Tks
This sounds like a complicated situation with your susceptibility of blood clots associated with the Factor V condition and taking estrogen/progesterone HRT, which can potentially increase the risk for blood clots.
From my understanding, through personal experience with HRT, is that there is less risk from clotting by using a transdermal estrogen replacement, instead taking oral meds. The oral tablets get processed by the liver where transdermal goes directly into your blood stream. I wonder if that might be a better option for you. But you still may need to balance that out with a micronized progesterone.
I used bio-identical cream going through perimenopause and it made ALL the difference in the world with those horrendous symptoms!
I found a good article that explains it much better than I can! It appears to be a site from Great Britain, but the information is what I wanted to share:
https://www.balance-menopause.com/menopause-library/is-hrt-off-limits-if-ive-had-a-blood-clot/
Doctors generally don’t receive a great deal of education on perimenopause or menopause so it’s just easy to prescribe the standard meds. It takes a little more effort to look into this and research healthier options. You might want to talk to a functional medical practitioner to get another option on treatment options. Or, if you can find a Women’s health specialist who is well informed on Perimenopause/menopause eduction and advancements.
Was this suggestion from estradiol with a primary care doctor, hematologist or gynecologist?
Thank you for your wonderful info. We had a loooooong conversation on this. My MD takes the factor v seriously. I may need to be more clear that the tabs are not oral and are inserts 🙂 So, will this be safe to use???? So scary to me. We are trying to find a safe balance to vaginal pain issues and safety with all this. Thanks for all info and experiences.
I hope you find a good resolution. I’m so sorry you’re having vaginal pain with all of this. Why does women’s plumbing have to be so complicated?!? 🙄
I’m way past menopause now but I still follow this menopause doctor I like on FB because my daughter is entering that ‘disturbance in the force’ era. If you’re on FB, here is a link to her page.
The Pause Life by Dr Mary Claire Haver
https://www.facebook.com/drmaryclaire
Best of luck to you. I hope you’ll report back with the choice of HRT and if it improved your symptoms. What we share here can really benefit so many others going through the same thing!
Hi! I'm a 49yo f with Factor V Lieden. I've had clusters of PE's several different times. I had a severe stroke 3 years ago and 4 wks ago had 6 heart bypasses. Are there any studies I can join to help with research?