Polycythemia Vera: Just been diagnosed

@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
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

@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

I have had PV cancer since 2021 and take 2 500 capsules of hydrozyurea daily. I rarely have to have a flotonomy because my numbers on blood test are great, but in 2026 I am having trouble with my TSH results. My thyroid blood tests indicate that my thyroid itself it working fine but maybe the hypothryodism is being caused by the hydrozyurea. I am sleeping too much and am tired which I think is caused by the hypothryodism issues.

I took thyroid pills for a couple of months and no difference in TSH results. So we discontinued those.
I have tried diet changes (I am also Type II diabetic but do not take insulin and maintain 6.5 to 7 AIC. )
I was walking 3 miles a day but stopped that two years ago after Hurricane Helene when I moved back to the midwest from Florida and do not have a great place to walk and of course Midwest winters. I will return to Florida eventually and start beach walking again but am trying to get back into the habit of walking here
A friend who also has PV cancer and is 83 had the same issue with her thyroid. She did the cancer test on her thyroid and found out that although the TSH results are off (like mine) she does not have thyroid cancer. So I don't want to go through cancer tests on thyroid if I can avoid it.
What has worked for you if you have any of these symptoms?

I am currently having issues with arthritis and my knee and am taking cortisone shots. I don't want to have knee replacement if I can avoid it and am doing cortisone shots and physical therapy twice a week.

If you have had TSH abnormal tests but normal thyroid function tests are normal what have you done to take care of the thyroid issue. I am 76.

@petoskeyb
Did you have your May appt to discuss thyroid meds? I don't like taking the extra 100 mg on the weekend given by PCP but have to wait to end of July for my endocrinologist appt since a new patient.

Neither my primary or oncology nurse practitioners seemed concerned about the increased TSH and needing toincrease my dosage of levothyroxine. I’ll get my TSH rechecked the middle of June after 8 weeks on the increased dosage
So, wait and see if it’s back to normal.
Meanwhile, my hematocrit and platelet levels have hit their targets, so the NP oncologist has decreased my hydroxyurea dose to 500 on MWF, and 1000 the rest of the week. I don’t know if that will throw in another variable with my thyroid. It’s always something 😆

I was diagnosed with PV in February 2021. For the first few years I had to do phlebotomies. Around November of 2024, my doctor started me on a course of hydroxyurea. Originally began because a gentleman on here was describing how taking it he was able to increase his time between phlebotomies. In my case, from the get-go I havent had any need for phlebotomies and I have no side effects. I see my hematologist every three months and all he does is adjust my dosage and Im good to go. I have no other outstanding health issues. Im active and walk and play tennis and eat a healthy diet. Im 62 and extremely grateful to all of the staff at my local facility . In fact I live exactly one mile from there .

@darryl12000 whenever they increase your dose, do you notice an increase in tiredness until a few weeks later when your body adjusts to the increase? Or is it just me?

They say this is a good cancer because it does not kill you if you get the right tablets or they may blood let I have got good tablets