I am curious: What symptoms did everyone have in the beginning for PV?

Two years ago, at age 78, I noticed severe itching after bathing. A physicians assistant noticed elevated hematocrit. (58) and elevated bilirubin and referred me toa hematologist. Eventually my jak2 was found mutated on bone marrow biopsy (painless) so we did phlebotomies and hydroxyurea to maintain good levels.
Itching is gone, but I was treated for skin cancer this year. I agree that a good hematologist matters. I have had several gout attacks this year, but no one knows why, they just increase the allopurinol. jjd

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Sooo... I'm really not sure if this is whats going on with me or not. But here's what I've been experiencing since March:

I am a very active person. Prior to these symptoms I would wake up early, take care of the animals, make lunches, go to the gym, head to work and walk up to ten miles, then go out with friends or hike after work.
Slowly I began to notice it was getting harder and harder for me to wake up and stay awake in the mornings. I would go take care of the animals and then curl up back on the couch to sleep until I had to get ready for work. I didn’t really think too much about this, I just figured maybe I was coming down with something and my body needed the extra rest. But this happened most mornings in the beginning of March, and if I want to be completely honest, I can back track this to the end of February.
Now, I am realizing that walking, or too much exercise will often trigger some of the symptoms, mainly the chest pain, dizziness/lightheadedness, and the weird feeling in my lungs. The next day I will end up needing to sleep or lay down all day. Even walking my dog can trigger some of the symptoms, and because that’s usually no more than a 30 min walk, I use that to gauge how I may feel the rest of the day. I have been avoiding the gym, and trying to be mindful of my activities overall to minimize the fatigue and these symptoms.
And yes, I am following up with a cardiologist first because this leans more toward heart problems.
The only thing that has been popping up really odd is my bloodwork. The first CBC I had when them symptoms began was a high Hemocrit.
Friday was really bad, and I went back to urgent care, expecting everything to show up normal like usual. But all three of my CBC were high: RBC, hemocrit, and hemoglobin.

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Sooo... I'm really not sure if this is whats going on with me or not. But here's what I've been experiencing since March:

I am a very active person. Prior to these symptoms I would wake up early, take care of the animals, make lunches, go to the gym, head to work and walk up to ten miles, then go out with friends or hike after work.
Slowly I began to notice it was getting harder and harder for me to wake up and stay awake in the mornings. I would go take care of the animals and then curl up back on the couch to sleep until I had to get ready for work. I didn’t really think too much about this, I just figured maybe I was coming down with something and my body needed the extra rest. But this happened most mornings in the beginning of March, and if I want to be completely honest, I can back track this to the end of February.
Now, I am realizing that walking, or too much exercise will often trigger some of the symptoms, mainly the chest pain, dizziness/lightheadedness, and the weird feeling in my lungs. The next day I will end up needing to sleep or lay down all day. Even walking my dog can trigger some of the symptoms, and because that’s usually no more than a 30 min walk, I use that to gauge how I may feel the rest of the day. I have been avoiding the gym, and trying to be mindful of my activities overall to minimize the fatigue and these symptoms.
And yes, I am following up with a cardiologist first because this leans more toward heart problems.
The only thing that has been popping up really odd is my bloodwork. The first CBC I had when them symptoms began was a high Hemocrit.
Friday was really bad, and I went back to urgent care, expecting everything to show up normal like usual. But all three of my CBC were high: RBC, hemocrit, and hemoglobin.

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Time to see a hematologist along with your cardiologist.

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They will need the Jak2 test to confirm but usually with all of those labs high AND the Jak2 test positive, diagnosis will be PV. Your blood is thick and is causing many issues. Def follow up with cardiologist, but I’m hoping once treated your symptoms will subside. Good luck!

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Thank you.
I honestly didn't think those 3 values spiking high once would warrent me going any further with this. But I looked at old bloodwork over the last 9 years and my hemocrit has never been below 40 and it just started slowly going up in 2021.

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Been searching for over 2 years, one hematologist oncologist has diagnosed PV. 1 test for jak-2 negative did not repeat, no biopsy despite AVN right hip now needing hip replacement due to pain and imminent collapse of femoral head, no know cause for AVN, diagnosed in 2014! I began having highly hemocrit, hemoglobin and red blood count in May 2022, kept wanting wait and see for 6 months, only suggestion baby asprin, no blood draws? Started with sweating 4 years, night sweats, swollen lymph nodes, fatigue, double vision, rashes red dots, blisters on skin and toes, now itching is maddening! Numerous blood tests, CT SCANS of brain, neck, pelvis and chest still no diagnosis but possible cancer? Appointment on June 12 with new hematology/oncology by primary with request for bloodwork and a PET scan. Possible lung cancer, blood or bone marrow cancer and so many doctors and specialists getting gaslighting only! I’m just about done with western medicine! Still losing 2-3 lbs weekly despite eating healthy and need help! Thanks and good luck guys! This is ridiculous trying to get answers!

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