I have been following this forum since I was diagnosed with ET calr in 2015 at the age of 41 but this is my first post, so here goes!
At diagnosis my platelet count hovered around the 600's but since then they have fluctuated between the 800 and 900's. I got the results of my last blood tests the other day and they have jumped up to 994, which has set all sorts of alarms bells ringing. I am an extremely anxious person. I know that with the calr mutation platelets tend to be higher but is it normal for platelet counts to fluctuate like this? Have asked my Consultant about this in the past but never got a straight forward answer! Hoping you lovely people can help.
Thanks
Whacks x
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Whacks
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I really don’t think there’s anything to worry about. Infection, inflammation and some people claim anxiety can even elevate your platelet count. Many people with ET have periods of fluctuating counts. Mine are usually stable, but I had a heavy cold/cough during one blood test. The platelet count at that time had significantly elevated; however, at the next clinic they had returned to ‘normal.’
The positive factor here is you’re well below the 1500 risk level, you’re also Calr (the better mutation), and under 60 years of age.
Random question , but have you been taking a zink supplement, mine had risen , three months ago , the only thing I had done differently was to take a zink supplement , I stopped it immediately, now three months later just had my blood results and they dropped by 30 points , just a thought .
When I was diagnosed last year at 38 with ET jak2+ my numbers were at 750 they spotted a pre diagnosis blood count of 825 that had never been picked up, I was stable at 750 for about 5 months when I had a pretty nasty car accident. I walked away without a scratch amazingly but suffered shock for 2 days. My next blood count about 3 weeks later had me at 1100!! My Cns couldn’t say definitively if the shake or shock of the accident had caused it! But my numbers stayed about 1000 for the next 9 months until I started Interferon Peg. I’ve been on it for 6 weeks and numbers have dropped to 800. I don’t know what the rhyme or reason for the increases in my case were but I’m sure glad they’re coming down again 😊
Hi there, I have ET calr and have just had to increase the hydroxy again because they keep rising and although my numbers aren't that high I do get symptoms. Up to 11 a week now, don't know why they keep rising. I am 57,
Brings up a good point with anxiety, as I truly believe this is affects our platelets and curious if that is happens to others?? Its a circle as we get anxious with this disease and trying things to bring it down, not to mention starting any new treatment gives me alot of anxiety. Ive noticed I tend to be so more dizzy when anxious/stressed and then get stressed about that too, so it just becomes this vicious cycle for me. My numbers started lower too and continue to rise, which ofcourse drives me nuts, and in between trying difference treatments now.
Hi, I was diagnosed with ET about 7 or 8 years ago, when I was 57, my platelets fluctuated a lot, then when I was 60 they really jumped up and stayed up so I was put on hydroxy, which I was terrified of, however it turned out not be as horrendous as I had feared, I got a few side effects but my body got used to the drug, for about 3 years then I had a bigger reaction to it, so I've been on Anagrelide for the last couple of years. If/when you are put on a drug you will be monitored closely, so try not to worry too much about it - easier said than done. I was really scared of starting medication but I have yet to grow another head or glow in the dark! Some people have been on drugs for over 20 years. I have a lot more trouble from my arthritis than the ET.
I am 62 years old with ET JAK2+. Last year I stopped taking hydroxycarbamide and then I went to see a private doctor in Harley Street. My platelet count had shot up to 1130 and I really did not feel any different but nevertheless started taking 2x500g Hydroxy again because of fear of the unknown, not having the full picture. Do you have any symptoms with the rising platelet count? Maybe you worry too much. Maybe your doctor is vague because he/she does not have a full picture, either. Maybe nobody has a full picture. It is frustrating not really knowing. This is the problem with these rare conditions, at least with Diabetes, for example, you would know about disease progression.
Hi whacks I’m ET Calr. I was diagnosed with platlets just under 800. I became stable for about 6 months with platelets around 450. Then I dropped 1 tablet a week to 11. Wham for the last 2 years they have steadily climbed and so have my meds. Now I’m on 17 a week.
It goes to show how important regular blood tests are.
You don’t say what meds you are on. Maybe an increase is needed.
I would be very worried about the clot risk.When my numbers were worse than yours I asked for another opinion, now take 1500 daily for 7 yrs and dont worry if my count was over 500 my consultant would take action to get it down asap.Good luck I know you feel vulnerable but this fight is for your life .
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