Essential Thrombocythemia: Looking for information and support

I Linda. I also have ET and have been on Hydroxyurea for over 20 years as well.
Lately it has been playing havoc with my blood counts. My platelets are way down, and my white count and hemoglobin too.

I'm 68 have had ET for 12 years. Doing ok on hydroxy and aspirin. Fortunately was caught before any clotting events.

I do have abdominal discomfort at times, fatigue is a pain, but I have learned that it improves if you keep moving and learn to plan activities around higher energy times during the day. I don't do mornings or late night things. This was much harder to deal with when my son was still in high school and I was working, and my hat is off to other parents and folks working. Hang in there! Get as much good sleep as you can and stay hydrated.

If I could change just ONE thing at the hematology/oncology office it would be for them to stop asking me to rate my pain and depression on a scale of 1-10, and to instead rate my fatigue levels.

I hate retirement (former English prof), miss my students. The pandemic was hard, but I think we are all doing better now. I am learning to cope with the new normal.

My dad also had ET. His was diagnosed when he had his first clot. He lived to be 82 and died of something else, but ET did pose some quality of life challenges and it does complicate other morbidities.

Hydroxyurea like hall chemo will have an effect on your blood work. It’s only been in the last month or two that my white count has dropped along with my hemoglobin.They decreased my Hydroxyurea. Now my plateletsare313.

Hi my name is Cathy and I am 74 years old. I have thrombocytosis and have been on hydroxyurea for 20 years.
When my platelet count was almost 1 million, they started the med.

Thank you

Hello Marylynda...I too have ET and have fatigue. Like you, the fatigue used to be extreme but I have been on Hydrea for three years having it increased recently and slowly the fatigue lessened and my energy increased slightly. It takes time for the hydrea to catch up with the disease. My best advice is to do what you need to do in the morning and save the afternoon for resting.
I think we will always have fatigue so we have to really take care of yourselves. That is all I can say for now.....hope this helps....Claire

Two years on Hydroxy and my energy level is low though that may be due to other meds but my suspicion is Hyd, Hard to know if it's mid 70's age?

I have had ET for about 3 yrs . Had bone marrow biopsy cause platelets so high.
Et and pv both were mentioned in report.
I have been on Hydroxyurea since . Platelets back in range but didn't know if that could effect right side of head.

Ache behind eye , temple and bone behind ear.
Had eye exam and dr could not see any reason behind eye to hurt.

Did blood work and it's ok just shows some inflammation in the sed.test

Hi MaryLynda, I moved your question to this exiting discussion about ET so you can connect with others who have essential Thrombocythemia like @shenriq @claire39 @lefsequeen @sstillwell @zeffirino @mpt77 and @huronshores.

MaryLynda, it looks like your message got cut off before you finished it. Can you explain more about what is happening with your eye and the right side of the head? When were you diagnosed with ET?