I’m a new user looking for some advice - I have recently discovered my blood platelets are raised and looking back at my medical records I can see that they have been above range for nearly 15 years. Results seem to fluctuate but they are normally between 500 to 600. I was referred to a hematologist who didn’t seem concerned due to my age (under 40) but had my blood tested for Jak2 (and the other mutations) which has come back clear. The consultant advised, due to this I DO NOT have ET, but just a raised platelet count? After researching this I have seen that any continuous result above 400 is considered ET and 50% of people diagnosed with ET have Jak2 negative results anyway.
I am having regular blood tests and can see the platelets are always high and above normal. As I pushed the consultant, he reluctantly suggested a Bone Marrow Biopsy, however kept asking me if I was sure, as the procedure is quite invasive. I have yet to decide, however would like to know if anyone else has come across the following:
Is Jak2 negative but has still been diagnosed with ET at a platelet count of 500-600?
Had Jak2 negative blood test results, but positive on a bone marrow biopsy?
Also can anyone describe their experience having a Bone Marrow Biopsy, I have read this can be very painful and can lead to problems later in life due to the excision.
Any advise or past experiences would be greatly appreciated. Thank you.