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Hi, my name is Carlavan and I to have ET with JAK2 mutation, my initial complaint to my primary was always extreme tiredness, headaches, and itchy dry skin. I too, thought thyroid. But after repeated blood workup & over time, she noticed elevated platelets and ordered a referral to a hemotologist who did the extreme blood testing at a lab in Texas. The diagnosis of ET and mutation was given and I was put on Hydroxya and 81mg aspirin. It is a chemo pill that destroys platelets and brings my counts within a normal range under 400,000. I am still tired, but I go great until about 7:00 at night. Skin is still a problem and the occasional headache. But all and all, I look around me each day and know it could be much worse. Good luck to you and I would seek a second opinion. I would want treatment if I were you.

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Replies to "Hi, my name is Carlavan and I to have ET with JAK2 mutation, my initial complaint..."

hey carlavan. i am soo sorry to here about you but i can feel you because i was also diagnosed by ET with JAK2 mutation and i had a special condition know as bud chiary syndrome. I was 17 when i got to know about it and it was a severe condition as i had a leakage in my oesophagus. now i am on my blood thinners and last year in dec went through a venoplasty. i have an enlarged liver nd spleen that i am worried about and yeah i also feel confused, lost, tired, and meaningless some days. its 3;36 am right now and i am stressed about my health and wondering if i will have a normal life or life at all.