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.
As a follow up to my question, I searched for diagnostic criteria for PV (since they kept emphasizing that DIAGNOSTIC criteria is a hematocrit over 32." They kept using "32" as some magical number. I know that internet resources aren't always accurate, but EVERY paper I have found in the peer-reviewed literature states that one of the major diagnostic criteria for PV is: "Hemoglobin >16.5 g/dL in men and >16 g/dL in women, or hematocrit >49% in men and >48% in women, or red cell mass >25% above mean normal predicted value" (reminder, my hemoglobin today was 10.7, and hematocrit 33, my red cell mass has never been studied." So, where did this magical number of 32 come from? And, does it make sense considering that value would make me anemic (not polycythemic)? Not sure if this is the case, but OLD criteria (from 1970 group), included as one of the major diagnostic criteria as "Category A criteria are as follows: Total red blood cell mass ≥36 mL/kg in males or ≥32 mL/kg in females" I'm wondering if I was literally just diagnosed with PV based on the WRONG measurement (as I have never had red cell mass measured), from an old set of criteria. This would explain the PV diagnosis, which is seemingly contradictory with my (albeit slightly) anemic hemoglobin/hematocrit. Any thoughts on this explanation, or, just in general about if/ow a definitive diagnosis of PV can be made based on just the JAK2 mutation and LOW RBCs?
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.
Because of polycythemia had a heart attack,because of sluggish blood.but after an attack was diognised.I am a vegetarian so Keto diet might not be suitable.Did u have a weight problem?
I have been recently diagnosed and had a heart attack,partly the reason being of high red blood cell count.Wanted to know if anyone with this blood abnormalities, how often they went for phelebotomy and what were their count of haemoglobin.
I was diagnosed with Polycythemia Vera three years ago. I was experiencing symptoms akin to high blood pressure. Historically, I have never had any issues with high blood pressure. I was having occular migraines -- seeing "floaters" moving through my field of vision, something I was familiar with because of migraines but I was having them without getting an actual migraine. My blood pressure was elevated and when I checked it, I found it to be considerably higher than normal. I went to the doctor and they ran a complete panel and when the results came back they referred me to oncology which I thought was really strange but later on it all made sense. My blood pressure was elevated due to my body simply producing too many red blood cells and in addition to the excess red blood cells I also had elevated platelets. After running tests found JAK-2 mutations, the diagnosis was polycythemia vera. My oncologist has set a threshold of 45% for my hematocrit, so when routine blood labs show a hematocrit higher than that I have a plebotomy. I was on a six week schedule for those initially, and then it moved to about every four weeks. After I went on a diet that put me into nutritional ketosis, I noticed that the time between phlebotomies increased. I have been able to go 8 and 12 weeks between them while in nutritional ketosis. I can't say whether or not there is a direct correlation, but that is what I've observed myself. Others may experience different results.
I have been recently diagnosed and had a heart attack,partly the reason being of high red blood cell count.Wanted to know if anyone with this blood abnormalities, how often they went for phelebotomy and what were their count of haemoglobin.
Hello @atir, welcome to Connect. I'd like to invite @chadknudson, @mwear, and @juiceinjc to this discussion as they have all mentioned having polycythemia vera here on Connect. @atir, if you don't mind me asking, what sort of feedback are you looking for from other members? Were you recently diagnosed?
I have been recently diagnosed and had a heart attack,partly the reason being of high red blood cell count.Wanted to know if anyone with this blood abnormalities, how often they went for phelebotomy and what were their count of haemoglobin.
Hello @atir, welcome to Connect. I'd like to invite @chadknudson, @mwear, and @juiceinjc to this discussion as they have all mentioned having polycythemia vera here on Connect. @atir, if you don't mind me asking, what sort of feedback are you looking for from other members? Were you recently diagnosed?
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As a follow up to my question, I searched for diagnostic criteria for PV (since they kept emphasizing that DIAGNOSTIC criteria is a hematocrit over 32." They kept using "32" as some magical number. I know that internet resources aren't always accurate, but EVERY paper I have found in the peer-reviewed literature states that one of the major diagnostic criteria for PV is: "Hemoglobin >16.5 g/dL in men and >16 g/dL in women, or hematocrit >49% in men and >48% in women, or red cell mass >25% above mean normal predicted value" (reminder, my hemoglobin today was 10.7, and hematocrit 33, my red cell mass has never been studied." So, where did this magical number of 32 come from? And, does it make sense considering that value would make me anemic (not polycythemic)? Not sure if this is the case, but OLD criteria (from 1970 group), included as one of the major diagnostic criteria as "Category A criteria are as follows: Total red blood cell mass ≥36 mL/kg in males or ≥32 mL/kg in females" I'm wondering if I was literally just diagnosed with PV based on the WRONG measurement (as I have never had red cell mass measured), from an old set of criteria. This would explain the PV diagnosis, which is seemingly contradictory with my (albeit slightly) anemic hemoglobin/hematocrit. Any thoughts on this explanation, or, just in general about if/ow a definitive diagnosis of PV can be made based on just the JAK2 mutation and LOW RBCs?
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2 ReactionsHi 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.
-
Like -
Helpful -
Hug
2 ReactionsBecause of polycythemia had a heart attack,because of sluggish blood.but after an attack was diognised.I am a vegetarian so Keto diet might not be suitable.Did u have a weight problem?
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Like -
Helpful -
Hug
1 ReactionI was diagnosed with Polycythemia Vera three years ago. I was experiencing symptoms akin to high blood pressure. Historically, I have never had any issues with high blood pressure. I was having occular migraines -- seeing "floaters" moving through my field of vision, something I was familiar with because of migraines but I was having them without getting an actual migraine. My blood pressure was elevated and when I checked it, I found it to be considerably higher than normal. I went to the doctor and they ran a complete panel and when the results came back they referred me to oncology which I thought was really strange but later on it all made sense. My blood pressure was elevated due to my body simply producing too many red blood cells and in addition to the excess red blood cells I also had elevated platelets. After running tests found JAK-2 mutations, the diagnosis was polycythemia vera. My oncologist has set a threshold of 45% for my hematocrit, so when routine blood labs show a hematocrit higher than that I have a plebotomy. I was on a six week schedule for those initially, and then it moved to about every four weeks. After I went on a diet that put me into nutritional ketosis, I noticed that the time between phlebotomies increased. I have been able to go 8 and 12 weeks between them while in nutritional ketosis. I can't say whether or not there is a direct correlation, but that is what I've observed myself. Others may experience different results.
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6 Reactions@atir, while we wait for some members to join us, you may find @chadknudson's post on polycythemia vera and nutritional ketosis https://connect.mayoclinic.org/discussion/polycythemia-vera-and-nutritional-ketosis/ interesting as he talks about regular phlebotomies as well.
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2 ReactionsI have been recently diagnosed and had a heart attack,partly the reason being of high red blood cell count.Wanted to know if anyone with this blood abnormalities, how often they went for phelebotomy and what were their count of haemoglobin.
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Helpful -
Hug
2 ReactionsHello @atir, welcome to Connect. I'd like to invite @chadknudson, @mwear, and @juiceinjc to this discussion as they have all mentioned having polycythemia vera here on Connect. @atir, if you don't mind me asking, what sort of feedback are you looking for from other members? Were you recently diagnosed?
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Helpful -
Hug
2 Reactions