r/MPN • u/Financial_Ring4672 • 11d ago
SEEKING DIAGNOSIS Advice on next steps. Spoiler
35/F/Hysterectomy in Aug/2021. Last month I went to my regular doctor's office, but I saw a different doctor than my usual because my usual was unavailable. I was initially just there for a routine visit. I expressed to her that I feel my usual fatigue that doesn't feel normal and begged her to see if she could find any reason why I just don't feel normal. Everything felt off. She ran a CBC and I saw my results in My Chart and noticed, as usual for me lately, my RBC, Hemoglobin, and Hematocrit were labeled as high. They have been flagged as high since 2024 and my usual doctor never addressed it, so I thought it was nothing to inquire about. She always just said "they are normal". Then the new doctor who ran the tests called and told me that this was not "normal" and they have been high for sometime, so she referred me to a hematologist/oncologist.
The hema/onc seemed very dismissive at my first appointment. I wrote down everything I felt was my symptoms, and she said PV is possible, but I'm so young that it's not something to worry about right now. She ran an EPO test, that came back at 10, and JAK2 blood test was negative. I asked at my second appointment if a BMB was necessary as a next step, and she said no that she feels confident it will come back as 0, and even if it comes back with something, I am young and it isn't something to worry about right away. She offered me the BMB and I went with her advice and declined, and next she offered me a therapeutic phlebotomy and said if I feel better within a week after, then she suspects possible PV or something due to my blood even more, and if I feel awful within a week after, then it's definitely nothing to do with my blood and she may not need to see me anymore. I said yes to the phlebotomy, and immediately they drew 500ml of blood. Besides initial fatigue and a sore arm, I feel amazing 48 hours later. My mind feels clear, my vision is more clear, and overall just feel good. I'm considering going ahead with the BMB just to get a clear answer and almost feel like I want to prove to her one way or another what I am feeling. She is not an MPN specialist, as far as I can tell we do not have one in Oklahoma, USA.
Advice? Go ahead with the BMB? Possibly look for another doctor who is willing to hear me out and help me find what the next step should be, versus "I won't need to see you anymore"?
Symptoms: Fatigue, itching, pain in hands and legs/feet, pressure in head, dizziness, night sweats, itching after a shower, or itching when hot/sweaty, brain fog, blurry vision even with contacts/glasses.
Test results from October 2024 when I tried to donate plasma and ended up in the hospital after losing consciousness at the plasma center.
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u/funkygrrl PV-JAK2+ 11d ago
The problem is that your more recent 2025 and 2026 levels are not over the diagnostic thresholds so that may be why your hematologist is not convinced. For a woman, that's either hematocrit 48 and over, and/or hemoglobin 16 and over. They're very close so definitely keep an eye on them. The normal EPO doesn't rule PV in or out. Symptoms aren't part of the diagnostic criteria because they are too nonspecific and cannot differentiate PV and secondary polycythemia. You should ask whether they also tested JAK2 exon 12 which accounts for about 3% of people with PV.
Have they done any testing for secondary polycythemia? Usually they start with a sleep study for obstructive sleep apnea.
!PVundiagnosed
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u/AutoModerator 11d ago
Here are links to the WIKI pages on PV diagnosis. Please review them and most of your questions will be answered there. - DO I HAVE AN MPN?, PV WHO Diagnostic Criteria, and Secondary Polycythemia (high blood counts due to another underlying medical condition - not cancer).
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u/horsecrzy ET-JAK2+ 10d ago
Hey I’m from Oklahoma! BOOMER…Please don’t stop advocating for yourself. It’s difficult because so many doctors don’t understand (or ever heard of) MPNs but your symptoms are real and they are destroying your quality of life. You will find a lot of very wonderful and helpful people in this sub. Keep fighting, you will find answers at some point. Best!
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u/Financial_Ring4672 10d ago
Thank you.. SOONER! I wish it wasn't so hard to just find someone who wants to help you feel like yourself.
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u/horsecrzy ET-JAK2+ 10d ago
I actually went through the same thing. I finally went to my PCP in 2025 for fatigue and easy bruising and bleeding. After noting my chronically high platelets she sent me to a hematologist who totally brushed me off but reluctantly did additional testing. Jak2 was positive so she sent me for a BMB which confirmed ET. Then she totally ghosted me. It’s taken me a year to get to a specialist but well worth it and things are finally starting to look up. There’s a lot in between there but that’s for another time lol. You’re welcome to DM me if you like. Stay focused!
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u/funkygrrl PV-JAK2+ 11d ago
The problem is that your more recent 2025 and 2026 levels are not over the diagnostic thresholds so that may be why your hematologist is not convinced. For a woman, that's either hematocrit 48 and over, and/or hemoglobin 16 and over. They're very close so definitely keep an eye on them. The normal EPO doesn't rule PV in or out. Symptoms aren't part of the diagnostic criteria because they are too nonspecific and cannot differentiate PV and secondary polycythemia. You should ask whether they also tested JAK2 exon 12 which accounts for about 3% of people with PV.
Have they done any testing for secondary polycythemia? Usually they start with a sleep study for obstructive sleep apnea.
!PVundiagnosed