Welcome to Connect, @patpambern. Having itchy skin seems to be pretty common with Polycythemia Vera. There are a few members in the forum going through the same thing with their PV and share their experiences about how to quell those itches!
Here’s one of the discussions that might be helpful:
My hgb is around 16.8 and hct around 49 for the past 2 years. Jak2 is negative but haven't done bone marrow biopsy . It's quite surprising that the CBC results are all normal if I took 1 litre of water before the test. Please kindly suggest what I should do.
Hi all. In December, I was diagnosed with a JAK2 mutation. Finally had my appointment with hematologist/oncologist today. They gave me a definitive diagnosis of Polycythemia Vera. I found this shocking, given that I am always slightly anemic (Hemoglobin is in 10-11 range, Hematocrit averages around 34-35. My white blood cell count is always a bit high- in the 15-25K range, platelets are typically in the high-end of normal range. Does this make sense to be diagnosed with Polycythemia Vera with anemic blood counts? I asked for the rationale, and was told (a) PV affects all blood cell types, not just RBCs, so that's why your white count is high (or those counts could be due to stress alone they said. (b) They kept emhasizing that the DIAGNOSTIC criteria for PV is "any hematocrit over 32" -- which just doesn't make sense to me, that an anemic hematocrit would indicate PV. Maybe this is just a diagnosis of exclusion? I'm very confused by this diagnosis. Thinking about needing a second opinion, in any case.
My hgb is around 16.8 and hct around 49 for the past 2 years. Jak2 is negative but haven't done bone marrow biopsy . It's quite surprising that the CBC results are all normal if I took 1 litre of water before the test. Please kindly suggest what I should do.
Hi @rosereb. Hemoglobin and hematocrit are based on whole blood numbers and are dependent on plasma volume. So if you were dehydrated, both hgb and hct would generally read higher on blood work. If you consumed a litre of water before you test that may have been enough to lower their actual level.
From your comments it looks as though you’ve been tested for a JAK2 mutation to see if that could be a cause for your elevated hgb and hct levels. There are other conditions which can cause these elevated numbers such as sleep apnea, kidney issues, living in high altitude, dehydration, to name only a few.
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How to manage the itch related to Jak-2 Mutation
Welcome to Connect, @patpambern. Having itchy skin seems to be pretty common with Polycythemia Vera. There are a few members in the forum going through the same thing with their PV and share their experiences about how to quell those itches!
Here’s one of the discussions that might be helpful:
PV itching, not after bathing!
https://connect.mayoclinic.org/discussion/pv-itching-not-after-bathing/
How long ago were you diagnosed with PV? Are you on any treatment plan for this such as phlebotomies or taking hydroxyurea?
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1 ReactionMy hgb is around 16.8 and hct around 49 for the past 2 years. Jak2 is negative but haven't done bone marrow biopsy . It's quite surprising that the CBC results are all normal if I took 1 litre of water before the test. Please kindly suggest what I should do.
It may be due to false lab result. Please repeat the test in another lab. I believe the result will turn negative
Hi @rosereb. Hemoglobin and hematocrit are based on whole blood numbers and are dependent on plasma volume. So if you were dehydrated, both hgb and hct would generally read higher on blood work. If you consumed a litre of water before you test that may have been enough to lower their actual level.
From your comments it looks as though you’ve been tested for a JAK2 mutation to see if that could be a cause for your elevated hgb and hct levels. There are other conditions which can cause these elevated numbers such as sleep apnea, kidney issues, living in high altitude, dehydration, to name only a few.
Here is a good article from Mayo Clinic regarding elevated hemoglobin and hematocrit.
https://www.mayoclinic.org/symptoms/high-hemoglobin-count/basics/causes/sym-20050862
Has your doctor checked for the possibility of sleep apnea?
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