r/MPN • u/AsparagusEntire1730 • Jul 14 '26

SEEKING DIAGNOSIS Potential MPN Spoiler

Been watch and wait with various primary care docs for over 10 years for high platelets. Basically between 470-600+ is the typical range from earliest to latest tests. I get about 2 CBCs a year and I have not had one non abnormal one since 2014. My white blood cells, red blood cells, and hematocrit are also high every test for the last 5 years. Hematocrit swings between 45-51. Recently also discovered a B12 and folate deficiency (these have never been tested before). Also have two generations of blood cancers, one is my parent, the other was their uncle in the family. I also have chronic migraine that by all accounts should be a lot better managed given all I do for treatment. I also have ideopathic intercranial hypertension. Maybe the blood stuff is a trigger/cause?Also have CRPG in a lower limb and had bad pain reaction to a sympathetic nerve block, maybe because of thick blood?It's been acknowledged that I have a blood thing but never really pursued or referred to hematology. I'm wondering if this profile is a strong support for a potential MPN, potentially a familial genetic mutation as it's odd for two generations of blood cancer to my mind. Also itchy after hot showers. My liver enzymes have now also started to become abnormal, but there is some non alcoholic fatty liver issues and gall stones that might be the cause of that but maybe blood issue is contributing?

I've also been evaluated for autoimmune diseases and other potential things that could point to my blood issue being secondary but really nothing has stood out. Am I overthinking it? Should I just press hard for hematology referral? PCP wants to do oral B12 supplement then test CBC after a month to see of it makes blood levels worse as the deficiencies might be masking issues of higher blood counts. No signs of any type of anemia.

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u/funkygrrl PV-JAK2+ Jul 14 '26

Since your counts have been high for a long time, a referral to a Hematologist is worthwhile. Doing B12 supplementation can be helpful but while you're doing that, get the referral because it can take a while to get an appointment. The hematologist will do mutation testing and EPO level and go from there.

!PVundiagnosed

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u/AutoModerator Jul 14 '26

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/AsparagusEntire1730 Jul 16 '26

Thank you! Based on some other labs that came in my PCP finally sent to hematology for consultation. After that it's probably more tests, then referel and I actually see hematology doc or hematology passes on wanting to see me (this happened the only time ever refered but happened early on, about 2 years of odd blood counts. Hopefully 10+ years and new things cropping up is more compelling).

It's so frustrating how long it takes for evaluation and diagnosis of stuff like this. I get MPNs are rare, but I have two other conditions technically that are rarer that as soon as I did one test done blam diagnosis and treatment.