Good afternoon dear people,
I have been today for my 3 months appointment with my haematologist. So today my platelets number is 433 from 580 in June. I am taking only aspririn for now. I don't know if I should be happy about this or more worried. My platelets haven't been grater then 600 and I am just wondering if I am misdiagnosed in this moment. Anyone else having platelets in this range and has been diagnosed with ET? I am also Jack 2 +.
Thank you and wish you all the best!
I would be thrilled. For me ever since I was diagnosed my platelets only went down with medication. Long may it continue xxx
My last blood results were 465, my consultant wants it down to 450. I am Jack 2 +, ET & MF. I always feel better in my self when my platelets are in the 400.
Yes they go up and down too. I’ve started to take B12 tablets, iron tablets, folic acid, vitamin D, along with aspirin, Hydroxy,Anagrelide.
I just take one day at a time. I have a lot of bone ache, along with arthritis in both knees. Tiered every day, part of ET and back full time.
Take care.
There certainly are people with ET who have thrombocytosis that is lower-grade and occasionally drops below 450K. It is normal for platelets to cycle by as much as 100K in a single day in response to what is going on in your body. It is important to remember that with ET the issue are not just the number of platelets but how your blood cells behave. Thrombosis is not the only risk as hemorrhage and microvascular symptoms can also occur.
Many people with ET do not need cytoreduction. Aspirin and monitor is all that is needed. There is not real benefit to making platelet levels "normal." There is benefit to controlling symptoms. These two goals are not the same thing.
If you are symptom-free and your platelets cycle under 600K then you likely have a relatively indolent case of ET. That is how my ET presented for most of 20 years. I never had a single incident of thrombosis. I did not have any significant symptoms until the ET progressed to PV. Hope you find that you have a symptom-free ET too.
Thank you very much for your reply, it really makes sense what you say. I am happy that we have you here and always here when we need. Thanks Hunter! Wish you all the best!
I think they make a diagnosis based on the presence of JAK2 and no other reason for platelets to be high.
I am about 5 weeks in on Hydroxy one 500mg per day but it has been upped to two on a Saturday. My platelets were 550 in June and I was on aspirin only until HU commenced. Next test they went down to 532 and last week down to 514 so I am hopeful they will continue to drop steadily. The consultant said his aim is to get them down to 400/450. Another test in two weeks so I am really hoping they may get down to 500 or just under by then. My diagnosis is ET + Jak2. Hope all sorts itself out for you.
It is more the long-term trend over time, rather than single readings, that matters most. Do you have any record of your platelet counts before your diagnosis? Did you ever have a CBC done years ago? What did it show then?
Very similar to you, ET JAK2+ since April 2021. Platelets 470-520 fluctuating. Hematologist has me on aspirin which helped with joint pain. Still get fatigue occasionally (1-2 times per week, often combined with stress) like someone rips the batteries out and I need to crash. Going in next month for another check-up.
Continuing to try to figure out the symptoms, what's ET and what's an unrelated issue or just me getting older... will take some time.
This are exactly my symptoms aswell! I am sorry to hear that you have to go trough this symptoms.. Wish you all the best!
My platelets were 480 when I was diagnosed after a bone marrow biopsy. They went up to 590 the following month and the last one after 7 wks interferon was 419
Update - appointment with cons. haematologist (Dr Mark Drummond)
Updated , 12 wk appointment today , !!!
Waiting call from haematologist 
Haematologist Scotland 
