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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Jun 17 9:11am | Replies (504)
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@zinsam

I have had high platelets for three years now, anywhere between 479-530. They sent me to a hematologist recently for testing and they didn't find anything. No inflammation, infection, other disorders and my Iron, folate, and B12 are all within normal range. But my Jak 2 was also negative so they said they don't know what's wrong with me. I don't know what else to do now, but I don't want to keep feeling awful for no reason. Can platelets be high for no reason? Should they be looking for something else. My Dr. Said to wait because my numbers were too low.

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Replies to "I have had high platelets for three years now, anywhere between 479-530. They sent me to..."
Colleen Young, Connect Director | @colleenyoung | Jul 10, 2023

Welcome @zinsam, I moved your message to this existing discussion about thrombocythemia so you can connect easily with other members.
- Essential Thrombocythemia: Looking for information and support: https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

You might also be interested in this related discussion:
- JAK2 negative with high platelets https://connect.mayoclinic.org/discussion/jal2-negative-with-high-platelets/

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ger63 | @ger63 | Jul 11, 2023

In my opinion, I would find another heme/onc doctor to get to the bottom of the issue. Perhaps a bone marrow biopsy. Good luck

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nohrt4me | @nohrt4me | Jul 11, 2023

Could you ask your doctor to test you for MPL or CALR mutations that would indicate ET ?

Possible that your doctor wants to see if elevated platelets are a longer term trend before doing a bone marrow biopsy, especially since you don't have JAK.

Not sure what you mean by feeling "awful," but possibly your symptoms aren't typical of ET or your hemo isn't aware of symptoms. My first hematologist was a good diagnostician, and I agreed with her treatment philosophy, but she insisted to the day that she retired that ET was always asymptomatic. After a couple of visits, just said I felt fine all the time because I didn't want to hear her tell me it was the menopause. Your GP might be better at helping you with symptoms. Mine was. Regular moderate exercise, cut-backs on starch and sugar, hydration, caffeine reduction helped with fatigue.

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