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Essential Thrombocytosis symptoms
Blood Cancers & Disorders | Last Active: Feb 13 1:02am | Replies (170)Comment receiving replies
In 2004, I was diagnosed with Essential Thrombocythemia (ET) at the age of 32. This diagnosis came after being referred to an oncologist/hematologist due to a high platelet count. At that time, I was informed there was no cure for ET, and the only available medications carried a risk of potentially leading to leukemia. My platelet count was notably high at 1000.
Given the lack of effective treatment options and the associated risks, I decided to manage my condition without medication. Fast forward 21 years, and my current physician reached out regarding my recent bloodwork. She indicated that my platelet count was elevated, it was now at 517. I found this improvement encouraging, especially considering my earlier count exceeded 1000.
After discussing my results with my doctor, I expressed an interest in researching natural remedies for reducing platelet levels rather than consulting an oncologist at this time.
Replies to "In 2004, I was diagnosed with Essential Thrombocythemia (ET) at the age of 32. This diagnosis..."
I am impressed that you not only took your diagnosis when you were in your 30’s and have managed to live this long . I am 69 , just got Diagnosed and was told it’s an “old persons disease “ and I have 15 - 20 yrs . Now you have the platelets down and you are again trying to manage it on your own . I strongly advise ( I am not a dr) that you begin taking medication as the platelets are thickening in your bone marrow and could cause thrombosis and stroke . Good luck !
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Hi micheletx ,
What you posted is very interesting. How did you manage your condition and get your platelets down to 517 with no meds? You are younger than I, but I am very hesitant to take Hydrea and still have not filled the Rx as I only learned I had this high platelet problem from a primary care visit with blood work onDecember 11, 2024. By January 10, 2025 I had an oncology/ hematologist prescribing me twice per day Hydrea 500mg for life! I did not fill it and went home to have a quick course on all this and was grateful to have found this group as it has given wonderful insight. I have done genetic testing and have CALR mutation only with no symptoms. I am doing a bone marrow biopsy in two days. Like you, I do not like knowing the treatment ultimately may cause leukemia. I would really like to find another alternative and manage my platelets myself. Mine did go down on their own 362 which is a large amount in about four weeks I thought. I would think another measurement of platelets would be appropriate before starting any Hydrea in my case. I know this is a slow cancer so no rush before knowing what is going on I feel. You are fortunate to be a bit more than ten years younger than I am, so I learned age is some huge risk factor which I really do not agree with personally, but that is how doctor view it.
Thanks for posting and sharing how you lowered your platelets so much on your own as mine would be just fine if I could manage to do that. Do you know how long it took for you to lower them to that great level?