Avoiding the Inevitable?
Hello all!
I’ve been luring here for a few weeks now in hopes that I would feel the need to post here but, here I am.
36/M
Reason for doctor suspecting MPN: previous unexplained DVT
High Blood Levels: since February 2025, but since have come down to normal as of march 2026
I was hospitalized last February (2025) with a blood clot near my liver. (Categorized as a Deep Vein Thrombosis)
I was out on blood thinners and the hematologist assigned to me was very thorough in her testing and investigation of the why I got a DVT. Ultimately I was negative for everything. I was put on Elequis (blood thinners) and was eventually told that I would have to get a Bone Marrow Biopsy. Which I did. The test results came back inconclusive. The BMB study had said that it wasn’t a particularly good sample to begin with apparently but my bone marrow did not clearly fit a specific diagnosis like PV though the changes in my marrow seem to suggest a type of MPN. They decided to call it NOS (Not Otherwise Specified)
My doctor ultimately recommended that I get a second opinion from a Benign Hematologist.
I eventually found one not too far from me in the medical center of Houston, TX.
I was put on Therapeutic Phlebotomy to get my blood back in normal range. Once my blood was back in normal range she put me on Hydroxyurea. She didn’t really explain as to why we’re not looking for secondary causes. She stated that all my results highly suggest that I have PV so we’re moving forward with that diagnosis and seeing how I react to taking the Hydroxyurea.
Since the phlebotomy my hemoglobin and hematacrit have been on the higher end of normal but still within range. My platelets have not ever been over 300. What am I missing here?!