Hi all, my name is Sam and I am new to the group. I have been suffering with high platelets for the last two years, but most recently the last six months they have been between 500 and 600. They have done numerous blood tests and my JAK2 mutation was negative. My inflammation markers are all normal as are all my other bloodwork. I now have a bone marrow biopsy booked in for the 2nd of September the results of which I will have on the 19th of September. Anyone have any idea what this could be or anyone similar to me? Thanks all.
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Hi Sam, sorry to read your experience.
My daughter is 2.5 and also had high platelets since found randomly at 8m (she passed put triggering a blood test and they were 1,200) we have ine had tests every three months, the last year has been more stable at 575-590.
Her iron was a bit low but after a year of supplements they are happy with the iron ad dot thik that is causing her high platelets.
She also had a lot of others tests like you.
They wont do a bone marrow biopsy as they say she is too young.
But at the end of this month they are repeating the JAk2, CALR and MPL tests as she was negative a year ago.
The bmb I hear, is supposed to help rule in or out an Myeloproliferative neoplasms (MPN) diagnosis. I heard you can ask for sedation. I hope yours goes well.
I haven’t yet found many other people 2 years in with no clear answer, we have found it really tough being in limbo, hope you are holding up ok! i found some facebook groups for Essential thrombocythemia (ET) which is what i have been suspecting for a while thay my daughter might have (but not confirmed) which have been useful hearing from others with and it helped me learn what tests to ask for. good luck
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