I understand you don't want to take meds until you are satisfied you have been properly diagnosed.

I will say that, besides lowering clot risk, benefits of HU also include lowering the chances of spleen enlargement (Dad had this uncomfortable and disfiguring condition until he started meds) and keeping LDH within normal parameters, basically keeping your liver from getting overworked is how it was explained to me. My LDH was high until I started HU. I also felt less fatigue on HU.

No, HU won't cure ET or stop progression to MF or AML. But it may slow things down, especially if your diagnosis comes after age 50.

I feel that I was carefully and properly diagnosed 10 yrs ago. But I don't feel that I get much quality doc time or info. Oncology offices are full of acute cancer patients, and the medical system is set up to short-sheet chronic cancer patients like us because we are not on the verge of a crisis or death. For example, I waited 45 minutes in the exam room at my last visit because the oncology nurse was dealing with a kid with leukemia and her parents.

When I wandered out to the nurses station to make sure they hadn't forgotten me, there were five PAs returning phone calls or calling people with lab results and trying to sked appointments.

They were also short-handed because it was December and the hematologists were all at the ASH conference. (Note to self: Don't let them sked you for Dec appts.)

Also, COVID drove a lot of people out of health care in my area, and it exposed a lot of worker safety issues that have led to labor disputes.

Add to that the general stinginess of most health care insurance or advantage plans.

All that affects the care we get.

You can go to alternative medicine clinics where they have relaxing music, aromatherapy, and lots of sympathy. But the treatments are expensive and don't work.

So: I get that you are frustrated and angry and you want confirmation of your diagnosis with a bone marrow biopsy.

None of us, of course, is capable of getting into the weeds interpreting your test results or explaining a sudden drop in platelets without meds.

Only thing I can suggest is to you ask your GP to refer you for a second opinion. I sure wish I could help more.