Hi @cindyem I just read another comment you posted about having PV and anemia. From information I’ve read, anemia can be associated with PV. Here’s an excerpt from Merck Manual https://www.merckmanuals.com/professional/hematology-and-oncology/myeloproliferative-disorders/polycythemia-vera

“Iron deficiency may eventually occur because of the increased need for iron to produce RBCs. In the presence of iron deficiency of any kind, RBCs become increasingly smaller (microcytic erythrocytosis) because the red cell hemoglobin concentration (MCHC) is defended at the expense of red cell volume (mean corpuscular volume [MCV]). Although patients with iron deficiency from other causes become anemic, patients with polycythemia vera have increased RBC production and thus even when iron-deficient initially have a normal hematocrit level but an elevated red cell count and microcytic RBC indices; this combination of findings is a hallmark of polycythemia vera.”

I can sure understand your confusion though with being diagnosed with PV and yet having low hemoglobin. That’s contrary to anything I’ve read or know about Polycythemia Vera. By definition it’s a blood disorder where the body makes too many red blood cells. Keeping in mind I’m not a medical professional but my blood cancer and subsequent bone marrow transplant journey thrust me deeply into the fascinating world of blood cancers. So I spend a lot of time helping out other members with research in these diseases.

The JAK2 mutation can cause not only PV but other proliferative neoplasm disorders. https://www.verywellhealth.com/jak2-mutation-5217909

I’d be scratching my head too and wondering if I have the right diagnosis with PV. Any of the other MPNs associated with JAK2 mutations such as essential thrombocythemia (ET), and primary myelofibrosis (PMF) are all treated with Hydroxyurea so your treatment really wouldn’t change. But usually people with PV have the need for phlebotomies and have high hemoglobin and hematocrit numbers.

With your background in hematology and genetics I’m sure this isn’t computing with you. Have you thought about getting a second opinion?