I just got diagnosed with ET a month ago...went to the doctor because I felt so tired. I'm encouraged to hear that for most of you this is your experience and not just in my head.
My platelets are about 800 and all I take is an aspirin a day. At what level were your platelets when you started chemo?
Thanks!
Hello Mary and welcome to our forum.
My platelets were only 500 when I was prescribed hydrea along with aspirin.
Your haematologist will determine which risk group you are in ie., low, intermediate or high. Age (over 60) is a factor for high risk, as was the case with me - hence the hydrea.
Fatigue is something that is expressed so often on this forum, so you're not on your own! I feel really fatigued today - but I can't complain as it's the first time I've felt like this for quite awhile.
Feel free to ask any questions as someone will always respond.
Mary x
Thanks, Mary. It's just so good to connect with someone with ET. I am just recently diagnosed and still trying to get my head around this.
Mary
My platelets were about 850 when I was diagnosed with ET at 53 years old but due to other medical problems that they found at the same time I was classed as high risk and was put on Hydroxycarbamide
Hello Mary, welcome to our forum. You are not alone, as you can see, most of us have fatigue in varying degrees of severity, so understand how you are feeling. Starting medication like Hydroxycarbamide, depends on many factors, not just the platelet levels, so your consultant will take into account your levels, past and present medical history/conditions, weight, BP, and risk factors, and symptoms, and then decide whether or not you need to start taking it. Have a look at our website mpnvoice.org.uk for lots of very useful information about ET and medications, and lots more. Best wishes, Maz
Hi Mary. in my case it was the tiredness/fatigue combined with my raised platelet count that triggered the testing for ET. In a way it was good to hear the diagnosis as I finally got an answer why I had these energy issues and it wasn't just me being a hypochondriac! I've just returned from a holiday in Portugal, the heat would have normally finished me off but with the advice of staying hydrated and my mini aspirin prescription it's been one of the best ever. I had quite a few naps along the way but it was managed a lot better than normal and I didn't have a major energy crash which is what normally happens!
I hope you find an improvement in your health with your medication and minor tweaks to your lifestyle.
Sunny
Thanks Sunny! I, too, was diagnosed because of fatigue and lightheadedness. I nap frequently but can't really do that at work. I find that I have to sit rather than stand for longer periods of time. I wonder or if you get accustomed to it and feel less lousy because of it or if it is a persistent problem.
Mary
Hi Mary
I work in the automotive trade and have a very physical job. I wish having a nap at work was an option, I like them quite a lot ha ha. for me when I have an energy slump it's not something I can get accustomed to as my head can really go which can be quite dangerous. Prevention is always better than cure they say and for me this rule totally applies. The one single thing that has helped me the most is drinking plenty of fluids. I notice on days when I don't I do feel a lot worse for it.
All the best
Sunny
Hello Mary, my platelets levels were 750 when I started Hydroxy four years ago. I also take aspirin daily. I haven’t experienced any side effects as yet, which I’m grateful for.
RR
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