I was diagnosed in 2019 with ET. Once the platelets got down to reasonable numbers things were ok until last year I noticed them rising again, slowly, and then in 3 months they took a significant spike (up 100). I'm now getting 6 weekly bloods and the numbers are down a little. I may need to up the hydroxy but not sure yet. Has this happened to other ET people? I admit I was really down about it, more than I thought I'd be. Clinician is supportive but clearly they don't know why it's happening.
I'm just back from holiday and although I had a good time I'm just fed up with having had to take a day or two to recover during the holiday from doing very little! Sorry - I know I'm moaning and people are so much worse than I am, but I can get a bit gloomy in facing that I can't do all the stuff I used to before. Sometimes it hits you in the face like a wet kipper..
Thanks for listening.
Skaro
Hi Skaro good to hear that you had a good holiday. Let’s see if any group member have had the same rising platelets level problems.
As always out nurse team in our Ask an Expert section are good as they will do a little research before coming back to you.
