While your platelet count isn't astronomical, Kelli, it's been well above normal for two years. In my opinion, your doctors shouldn't be disregarding it.

Could you ask your hematologist for a referral to an MPN specialist? Although they are blood specialists, what ordinary hematologists don't know about MPNs is shocking.

As nohrt4me says, a bone marrow biopsy could yield essential answers.

It's awful to be a medical mystery, especially since doctors tend to dismiss problems they can't figure out.

You know there's something wrong. Debilitated by headaches and fatigues, still I let a doctor gaslight me for two years. Finally I demanded a referral to an oncologist, who diagnosed my ET right away.

Be braver than I was!