Hmm, I think @1pearl mentioned that her platelet levels are dropping without meds and that she is CALR+, not JAK2.

So, if I'm reading this right, I get why she is hinky about taking HU with platelets that are dropping spontaneously. If you have the CALR mutation, ET, PMF, and MF are sometimes hard to differentiate, and she has asked for a BMB, which seems like a very prudent step to clear up that mystery and to ensure HU is the best med.

Taking baby aspirin is what keeps the clots and strokes at bay. She's neg for vonWillebrand's Syndrome and has been cleared to take baby ASA. If she takes the ASA, that should help curb clot risk until she sees a doc who can give her a clear diagnosis.

And getting a diagnosis can take a long time: My platelet levels were first taken seriously in March 2014 after a cardiology procedure. After doing monthly CBCs for awhile to establish that platelets were going up, GP sent me to hemo in August. I tested neg for JAK2, and she ordered a bone marrow in late Sept. Insurance would not pay for MPL and CALR tests because they were too new, but hemo suspected CALR. I got the BMB results and diagnosis in early Nov and was put on ASA. Following year I got the CALR test and it was positive. Because CALRs don't clot as often as JAK2's and I had no spleen enlargement, doc allowed platelets to run about 800 before starting HU in 2018. By that time, I was really feeling the fatigue, and HU perked me up and, by 2019, kept my platelets in 400s.