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Polycythemia Vera and Nutritional Ketosis

Blood Cancers & Disorders | Last Active: Mar 12 11:17pm | Replies (57)

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@gabbycdp

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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Replies to "I’m at a loss after being told by my dermatologist she believes I have PV. I..."

Dear Gabby, you are very frustrated! I just turned 77 and was diagnosed with PV 5 years ago after having a minor operation where my blood work showed a high PLT count. I refused to take the prescribed Hydroxyurea (I call it the Poison Pill) for 2.5 years until fatigue was interfering with my life. Now, 2.5 years later I am mostly fine, no major side effects from the PP (1000 mg a day) and much better than most people who have PV. I attribute this to my healthy diet and the 14 - 16 vitamins and supplements I take every day. Try to stay positive and investigate fueling your body with healthy and nutritional food, and if you do have PV, try some prescription drugs.