Hi there. I’ve just joined myself and have been living with ET since 2006. Reading yours and other peoples stories, I feel I have been very lucky! I was diagnosed after a routine blood test and immediately put on low dose aspirin and Hydroxycarbamide. I have had a few ups and downs trying to get the dose right. At one point a registrar decided to take me off hydroxycarbamide with near disastrous results. I lost feeling in both my hands and my platelets went way over 1000. However, overall I have had no serious side effects, apart from tiredness. I would say it’s vital to be as healthy as possible with a good diet and exercise, but don’t overdo it. When I overdo it I feel my whole body had shut down I have had a number of consultants and been to four different hospitals over the years. One thing I would say is that if you find a good consultant stick with him/her like glue! I currently have regular blood tests (yuk) and see my consultant every three months. Fingers crossed, I’m still stable and no bad side effects. Wishing you all the best and take care of yourself.

Hi, 

i asked my consultant if I could go on the hydroxcarmabide but he was reluctant due to my age. My concern is that the treatment I am on at the minute is more of a trial than something tried and tested. I’m pleased to hear you managing your symptoms - that’s given me some hope that mine will settle down too. The tiredness is hard isn’t it? I find that my body feels as though it’s going to give up but nothing happens - I just feel physically drained throughout the day most days.

Thank you so much for replying to me - I just wanted to hear from as many people as possible. I often feel a bit out of my depth with the consultant and almost as if I am being hurried along.

Thank you! Yes they said had I been older they would recommend the hydroxycarmabide but they said the risks are higher if I was to use that treatment long term (starting in my 20s) 

I met with professor Harrison in London who specialises in these disorders. And she basically told me very much the same as my consultant had already told me.

hioefully things start to get easier. All the best with your treatment 

I have had essential thrombocythemia for 20  years now,i inject intron a twice weekly,i was on hydroxycarbamide but decided to stop this after about 10 years after reading studies that long use of it can bring on leukemia and have been on intron a and my platelets have remained about 400 so its controlled,if anybody needs any advice just drop me a line