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Polycythemia Vera and Nutritional Ketosis
Blood Cancers & Disorders | Last Active: Mar 12 11:17pm | Replies (57)Comment receiving replies
Hello I was recently diagnosed with Polycycemia Vera?I will be transparent I'm a health care professional more more importantly I believe in this old guy called Socrates who said "I don't know anything, question, question question! It's in y nature, too. I noticed that my hemoglobin, hematocrit and platelets were slowly increasing over time..I would mention it to my medical Internist who would say its dehydration several times. Then in December I had a total black out in my right eye. I was able stay calm and timed it, it lasted about a minute before it completely resolved..I knew that is a TIA or mini stoke so I went to the ED..They did everything known to man looking for the root cause..Nothing was found. The neurologist put me on an aspirin...When on got home I went on MY Chart and notice that now my H &H and Platelets were now over normal. I said enough and made an appointment with a hematologist. On my first visit the hematologist walked into the room, sat down and sat you don't have leukemia and then said you have polycythemia vera..I was utterly shocked. The blood work didn't support leukemia and I had never heard of Polycyceia Vera..Even with my background. Apparently PV is so rare many Doctors have never heard of it. It was a surreal day...Shock, fear...They drew my blood then to identify the JK2 gene mutation, it came back positive as expected. I'm in a holding pattern but not for long I suspect..I'm getting a second opinion but not sure why probably not to wish I had later on....The Hematologist is a PV specialist at MDAnderson and I see her in two weeks. I'm 75 and wonder if anyone else has been diagnosed with PV at this age and what their experience
has been? I'm very open and willing to share or support in any way I can.
Replies to "Hello I was recently diagnosed with Polycycemia Vera?I will be transparent I'm a health care professional..."
And how are you doing now? I was diagnosed with PV about 7 months ago at 72– very similar story about problem eyes, looking at old test results, etc. I too never heard of PV, and I’m pretty medically savvy also. I’m thinking of MDAnderson for another opinion too. Currently phlebs and low-dose aspirin and many supplements to keep the clotting away. Might you share your experience at MDAnderson? It would be a long trip for me, but my life is worth it!
I’m at a loss after being told by my dermatologist she believes I have PV. I go to the cancer clinic in a week. I retired at 60 because I could feel life being sucked out of me since around 57. After constantly seeing my PA for fatigue she increased my thyroid medication. My indigestion and choking was getting worse so my stomach doctor stretched my esophagus and increased my medication. He also diagnosed me with hemochromatosis!! Donate blood and avoid iron products. Now TG 2024 I felt like death warmed over! I struggled to breathe, trouble eating and the uncontrollable itching! So off to my PA. Hum, no clue. Pump me full of steroids. OMG!! I started breaking out and clawing my skin. No sleep. Uncontrollable sweating day and night. I could barely bathe myself. January 2025, I see my dermatologist she prescribes more oral steroids, skin and hair steroid products, too. Eventually it somewhat clears up by symptoms still there. She had also taken a skin scraping and biopsy. My return appointment she started treating me for scabies although the tests were not positive and she took a lot of blood to send off. My final visit was when I received my blood work and was told she believed me to have PV!! I had been begging and pleading with my PA for years to research further. I saw another doctor only to be told it was menopause. Seen a gynecologist and put on a very mild dose of hormones. No help. Told it was my age. Stayed teed off because I was always extremely active yet I had the itching, nose bleeds and feeling of fullness for years!! I’ve dealt with fibromyalgia and even had histoplasmosis. It took an eye doctor to tell me that when I was trying to get over uhm bronchitis 😳Some azz of a doctor told me I was a medical mystery!! This may not post because of the length I know it’s long just get so aggravated because doctors won’t listen or seem to question years of changes in your bloodwork or voicing your concerns. Please let me know more about what you are dealing with and anything that helps you.
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What did you recently learn from your hematologist regarding diet and exercise?