I was diagnosed with polycythemia Vera in February 2026. Currently on 1000mg of hydroxyurea and 81 mg aspirin daily.
I also have hypothyroidism - 20 plus years - and on 100 mcg levothyroxine daily. My TSH levels have been stable for years. Last result in September was 3.76. In prep for my annual physical I had the usual lab tests ordered last week. My TSH levels jumped to 6.86, out of normal range.
Reading up on drug interactions with HU, there doesn’t appear to be any issues with levothyroxine. I take the levothyroxine in the morning and the HU at night.
Has anyone with PV experienced problems with their thyroid?
@simple27 I took my promethease jak2 variant information with me to my Dr appointment. I’m showing three areas of increased risk. I’m now waiting for Jak2 lab results. Blood was drawn last Thursday (feb14) at Mayo, any idea on the turn around time for results there?
@thli'm being cared for in a major academic institution which if I named it, it would garner instant respect..After mine was drawn it seems many weeks with no word..Then I had an appointment with my primary Doctor and she asked if ii wanted to know the results..Of course I said yes..It was positive...my hematologist didn't want to hear my questioning their delaying short, keep asking.
PV JA2 is not an easy disease to live with..I was diagnosised 3 years ago but im sure I had it before then. with doctors blaming the increasing hematocrit on dehydration. Finally I had a TIA. It makes me wonder how many of us die from a stroke or heart attack without being diagnosed with PV...it's not like they can cut out a tumor..PV affects your entire body....Please, please drink plenty of water to keep the blood as thin as you can. Get under the care of a cardiologist ..ive researched this disease to death and understand it's not for the weak. I read in one of the posts that taking vitamin C resulted in less Thereputic phlebotomies. I find that interesting since my hematologist specially told me not to take vitamin C and iron..I need to research the vitamin C angle. If your able to use AI it's invaluable..im 77 close to 78 if I can use AI so can anyone else, it's very easy..AI pulls from major academic institutions..Information is power.
PV JA2 is not an easy disease to live with..I was diagnosised 3 years ago but im sure I had it before then. with doctors blaming the increasing hematocrit on dehydration. Finally I had a TIA. It makes me wonder how many of us die from a stroke or heart attack without being diagnosed with PV...it's not like they can cut out a tumor..PV affects your entire body....Please, please drink plenty of water to keep the blood as thin as you can. Get under the care of a cardiologist ..ive researched this disease to death and understand it's not for the weak. I read in one of the posts that taking vitamin C resulted in less Thereputic phlebotomies. I find that interesting since my hematologist specially told me not to take vitamin C and iron..I need to research the vitamin C angle. If your able to use AI it's invaluable..im 77 close to 78 if I can use AI so can anyone else, it's very easy..AI pulls from major academic institutions..Information is power.
@jackiecarey
Hello PV FRIEND!! I have dealt with this for almost 30 years ! Unfortunately now it’s progressed into MF MYELOFIBROSIS!
I am 73 years old! But I do not know how to use AI to get most recent and advanced information about
Treatment for MYELOFIBROSIS!
I use MAYO S WEB SITE AND RESEARCH THERE !
So if anyone want to teach me how to use AI ! I would love to attempt! Thank you
Good luck with PV
FEEL FREE TO ASK ME ANY QUESTIONS
YOUR FELLOW PV ! Hanya
PV JA2 is not an easy disease to live with..I was diagnosised 3 years ago but im sure I had it before then. with doctors blaming the increasing hematocrit on dehydration. Finally I had a TIA. It makes me wonder how many of us die from a stroke or heart attack without being diagnosed with PV...it's not like they can cut out a tumor..PV affects your entire body....Please, please drink plenty of water to keep the blood as thin as you can. Get under the care of a cardiologist ..ive researched this disease to death and understand it's not for the weak. I read in one of the posts that taking vitamin C resulted in less Thereputic phlebotomies. I find that interesting since my hematologist specially told me not to take vitamin C and iron..I need to research the vitamin C angle. If your able to use AI it's invaluable..im 77 close to 78 if I can use AI so can anyone else, it's very easy..AI pulls from major academic institutions..Information is power.
I was diagnosed with polycythemia Vera in February 2026. Currently on 1000mg of hydroxyurea and 81 mg aspirin daily.
I also have hypothyroidism - 20 plus years - and on 100 mcg levothyroxine daily. My TSH levels have been stable for years. Last result in September was 3.76. In prep for my annual physical I had the usual lab tests ordered last week. My TSH levels jumped to 6.86, out of normal range.
Reading up on drug interactions with HU, there doesn’t appear to be any issues with levothyroxine. I take the levothyroxine in the morning and the HU at night.
Has anyone with PV experienced problems with their thyroid?
@petoskeyb I was diagnosed with PV 4 years ago and have been on HU (500mg) since.
Have had no issues with my Thyroid, but I do now have an enlarged Spleen.
@petoskeyb I was diagnosed with PV 4 years ago and have been on HU (500mg) since.
Have had no issues with my Thyroid, but I do now have an enlarged Spleen.
@beebo
Thanks for your input.
Had my first ultrasound in March. Spleen looks fine but liver slightly enlarged and gallbladder full of stones - no symptoms from that.
Sometimes I think the more they test the more they find - whether related to PV or not 😆
PV JA2 is not an easy disease to live with..I was diagnosised 3 years ago but im sure I had it before then. with doctors blaming the increasing hematocrit on dehydration. Finally I had a TIA. It makes me wonder how many of us die from a stroke or heart attack without being diagnosed with PV...it's not like they can cut out a tumor..PV affects your entire body....Please, please drink plenty of water to keep the blood as thin as you can. Get under the care of a cardiologist ..ive researched this disease to death and understand it's not for the weak. I read in one of the posts that taking vitamin C resulted in less Thereputic phlebotomies. I find that interesting since my hematologist specially told me not to take vitamin C and iron..I need to research the vitamin C angle. If your able to use AI it's invaluable..im 77 close to 78 if I can use AI so can anyone else, it's very easy..AI pulls from major academic institutions..Information is power.
@jackiecarey I was diagnosed with PV last year in November. I’m almost 80 and consider myself in good physical health. I was on 500mg hydrea but last week after my hematologist visit he bumped me up to 1000mg when my platelets went up 50 points. My platelets are hovering close to 600. I have 1 pint of blood drawn every 30 days and drink at least 96 ounces of water daily. I’m hoping when my platelets numbers drop below 400 that I can get back to 500mg hydrea daily. I regularly do Pilates weekly on a reformer and strength training 3 times a week and try to get 4 days of 1 hour of cardio weekly. Generally this is walking with some rowing. It is important to do this I know for your heart health and MENTAL health. All of us with this blood disorder have to remember that our glass is always half full. And my best friend is AI. What a great tool we all have in this!!!
To the person who asked about AI. there are several out there. ive tried several and I settled on Grok and then moved to Super Grok..I use apple products...Go to your App Store and download ( don't let the word download scare you ) it actually says "get"Grok and start using by asking questions. I progressed to super Grok as time went on Grok is free, Super Grok is I think 20 dollars a month. One caveat I would check with your hematologist before any major changes. BTW I now use Grok for everything..understanding lab work, ...fixing things around the house really just about everything..it will write emails for you, offer suggestions to ask your hematologist at your next appointment.... I promise you, you won't be disappointed, I love it. BTW I asked Grog about vitamin C supplements and it was a big no, please check with your hematologist ....
I was diagnosed with polycythemia Vera in February 2026. Currently on 1000mg of hydroxyurea and 81 mg aspirin daily.
I also have hypothyroidism - 20 plus years - and on 100 mcg levothyroxine daily. My TSH levels have been stable for years. Last result in September was 3.76. In prep for my annual physical I had the usual lab tests ordered last week. My TSH levels jumped to 6.86, out of normal range.
Reading up on drug interactions with HU, there doesn’t appear to be any issues with levothyroxine. I take the levothyroxine in the morning and the HU at night.
Has anyone with PV experienced problems with their thyroid?
@petoskeyb
Same situation as you. Taking 100 synthroid for hypothyroidism for years and normal TSH results. Started HU 500 daily last June for PV. Just had thyroid tests and TSH has doubled to 7.6 since last year's thyroid test but T3 and T4 results remain the same.
Oncologist doesn't want to address this since HU working well on blood counts. So my PCP has increased synthroid to add 1/2 pill on Sat and Sun. I don't want to keep increasing synthroid because I also have osteopenia. HU has had many more unwanted side effects so I'm adding another to my list. I might decide to see an endocrinologist.
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I was diagnosed with polycythemia Vera in February 2026. Currently on 1000mg of hydroxyurea and 81 mg aspirin daily.
I also have hypothyroidism - 20 plus years - and on 100 mcg levothyroxine daily. My TSH levels have been stable for years. Last result in September was 3.76. In prep for my annual physical I had the usual lab tests ordered last week. My TSH levels jumped to 6.86, out of normal range.
Reading up on drug interactions with HU, there doesn’t appear to be any issues with levothyroxine. I take the levothyroxine in the morning and the HU at night.
Has anyone with PV experienced problems with their thyroid?
@thli'm being cared for in a major academic institution which if I named it, it would garner instant respect..After mine was drawn it seems many weeks with no word..Then I had an appointment with my primary Doctor and she asked if ii wanted to know the results..Of course I said yes..It was positive...my hematologist didn't want to hear my questioning their delaying short, keep asking.
PV JA2 is not an easy disease to live with..I was diagnosised 3 years ago but im sure I had it before then. with doctors blaming the increasing hematocrit on dehydration. Finally I had a TIA. It makes me wonder how many of us die from a stroke or heart attack without being diagnosed with PV...it's not like they can cut out a tumor..PV affects your entire body....Please, please drink plenty of water to keep the blood as thin as you can. Get under the care of a cardiologist ..ive researched this disease to death and understand it's not for the weak. I read in one of the posts that taking vitamin C resulted in less Thereputic phlebotomies. I find that interesting since my hematologist specially told me not to take vitamin C and iron..I need to research the vitamin C angle. If your able to use AI it's invaluable..im 77 close to 78 if I can use AI so can anyone else, it's very easy..AI pulls from major academic institutions..Information is power.
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Like -
Helpful -
Hug
2 Reactions@jackiecarey
Hello PV FRIEND!! I have dealt with this for almost 30 years ! Unfortunately now it’s progressed into MF MYELOFIBROSIS!
I am 73 years old! But I do not know how to use AI to get most recent and advanced information about
Treatment for MYELOFIBROSIS!
I use MAYO S WEB SITE AND RESEARCH THERE !
So if anyone want to teach me how to use AI ! I would love to attempt! Thank you
Good luck with PV
FEEL FREE TO ASK ME ANY QUESTIONS
YOUR FELLOW PV ! Hanya
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Like -
Helpful -
Hug
1 Reaction@jackiecarey
Hello again friends !!
NEED TO MAKE CORRECTIONS
TYPO 🤮 I have been dealing with PV FOR
20 years not 30 years!!
@petoskeyb I was diagnosed with PV 4 years ago and have been on HU (500mg) since.
Have had no issues with my Thyroid, but I do now have an enlarged Spleen.
@beebo
Thanks for your input.
Had my first ultrasound in March. Spleen looks fine but liver slightly enlarged and gallbladder full of stones - no symptoms from that.
Sometimes I think the more they test the more they find - whether related to PV or not 😆
-
Like -
Helpful -
Hug
1 Reaction@jackiecarey I was diagnosed with PV last year in November. I’m almost 80 and consider myself in good physical health. I was on 500mg hydrea but last week after my hematologist visit he bumped me up to 1000mg when my platelets went up 50 points. My platelets are hovering close to 600. I have 1 pint of blood drawn every 30 days and drink at least 96 ounces of water daily. I’m hoping when my platelets numbers drop below 400 that I can get back to 500mg hydrea daily. I regularly do Pilates weekly on a reformer and strength training 3 times a week and try to get 4 days of 1 hour of cardio weekly. Generally this is walking with some rowing. It is important to do this I know for your heart health and MENTAL health. All of us with this blood disorder have to remember that our glass is always half full. And my best friend is AI. What a great tool we all have in this!!!
To the person who asked about AI. there are several out there. ive tried several and I settled on Grok and then moved to Super Grok..I use apple products...Go to your App Store and download ( don't let the word download scare you ) it actually says "get"Grok and start using by asking questions. I progressed to super Grok as time went on Grok is free, Super Grok is I think 20 dollars a month. One caveat I would check with your hematologist before any major changes. BTW I now use Grok for everything..understanding lab work, ...fixing things around the house really just about everything..it will write emails for you, offer suggestions to ask your hematologist at your next appointment.... I promise you, you won't be disappointed, I love it. BTW I asked Grog about vitamin C supplements and it was a big no, please check with your hematologist ....
@petoskeyb
Same situation as you. Taking 100 synthroid for hypothyroidism for years and normal TSH results. Started HU 500 daily last June for PV. Just had thyroid tests and TSH has doubled to 7.6 since last year's thyroid test but T3 and T4 results remain the same.
Oncologist doesn't want to address this since HU working well on blood counts. So my PCP has increased synthroid to add 1/2 pill on Sat and Sun. I don't want to keep increasing synthroid because I also have osteopenia. HU has had many more unwanted side effects so I'm adding another to my list. I might decide to see an endocrinologist.