@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.
@mw2023 Nice to know I’m not alone!
Just got a message from my primary this week when she saw my elevated TSH asking if I’m still taking my same dosage - sigh - after all these years !
So I go in to see her for my annual exam soon and will ask her if I need to be referred to an endocrinologist. Don’t go back to the endocrinologist until next month to hear their opinion on it.
Barb
@petoskeyb
Hello friend! Just a brief comment from someone cares about BLOOD ILLNESS PALS !
I would not just dismiss the GALBLADDER filled with stones ! See a GI SPECIALIST! Or even a stomach surgeon! Those stones can get infected and make very sick !
I had my gallbladder removed many years ago before they did the short surgery , forgot the name
We all have enough serious issues without additional ones popping up!
Thank about it ! Research
Go see a doctor who treats this ! It will not be your oncologist! Hanya
@hanya Thanks for your insight.
Yes the oncologist NP just said if they don’t bother you we don’t like to touch it.
Seeing my primary this week for my annual exam and will question her about this.
I have noticed that if a symptom is not in their wheelhouse, specialists either dismiss it or try to make it fit in their specialty.
Barb
@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 😆
@petoskeyb
Hello friend! Just a brief comment from someone cares about BLOOD ILLNESS PALS !
I would not just dismiss the GALBLADDER filled with stones ! See a GI SPECIALIST! Or even a stomach surgeon! Those stones can get infected and make very sick !
I had my gallbladder removed many years ago before they did the short surgery , forgot the name
We all have enough serious issues without additional ones popping up!
Thank about it ! Research
Go see a doctor who treats this ! It will not be your oncologist! Hanya
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.
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 ....
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!!!
@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 😆
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.
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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Helpful
Hug
@mw2023 Nice to know I’m not alone!
Just got a message from my primary this week when she saw my elevated TSH asking if I’m still taking my same dosage - sigh - after all these years !
So I go in to see her for my annual exam soon and will ask her if I need to be referred to an endocrinologist. Don’t go back to the endocrinologist until next month to hear their opinion on it.
Barb
@hanya Thanks for your insight.
Yes the oncologist NP just said if they don’t bother you we don’t like to touch it.
Seeing my primary this week for my annual exam and will question her about this.
I have noticed that if a symptom is not in their wheelhouse, specialists either dismiss it or try to make it fit in their specialty.
Barb
@petoskeyb
Hello friend! Just a brief comment from someone cares about BLOOD ILLNESS PALS !
I would not just dismiss the GALBLADDER filled with stones ! See a GI SPECIALIST! Or even a stomach surgeon! Those stones can get infected and make very sick !
I had my gallbladder removed many years ago before they did the short surgery , forgot the name
We all have enough serious issues without additional ones popping up!
Thank about it ! Research
Go see a doctor who treats this ! It will not be your oncologist! Hanya
@jackiecarey
Hey Jackie! I am the one who asked about AI and how to research ! Thank you for great explanation! I will download the free Grock
@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.
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 ....
@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!!!
@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 😆
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Hug
1 Reaction@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.
@jackiecarey
Hello again friends !!
NEED TO MAKE CORRECTIONS
TYPO 🤮 I have been dealing with PV FOR
20 years not 30 years!!