Essential Throbocytosis

Hi,

  I was diagnosed with ET 6 years ago.

I had heart stent placement and lost hearing in my right ear.

Then I started feeling dizzy.  When I kept telling my doctors something was wrong, they started making me feel like it was "all in my head".

I passed out one day and was seen in the ER.  They are the ones that figured out my problem and referred me to a hemotologist.

I had a bone marrow test in the Dr. office.  It was not that big a deal and not that painful.

Started on Hyrdea 1000 mg/day.  Am now up to  1500 mg/day.  I do get very tired, but nothing that stops me from doing what I need or want to do.  The Hydrea has knocked my RBC/Hgb low is all.

Anyway, would be more than happy to encourage anyone to ask questions.  Thanks for listening.

I have had ET since 1998 when I was 46. It was found during a routine physical. I take anegrylide for it. I do have issues with being anemic, and do get a little tired, but like you it doesn't stop me. I have had no other symptoms. So I guess I am really lucky. I would like to hear from someone that has had it a lot longer and what they have experienced.