@simple27 -- Agree that my anemic hematocrit points AWAY from PV. I wish I could convince my oncologist of how ridiculous this diagnosis is. Almost like saying "you are obese because you weigh 80 pounds." I suppose it is POSSIBLE to have masked polycythmia vera, but that's usually only true if there is substantial, consistent bleeding. But, in any case you cannot DIAGNOSE PV BASED on a low hematocrit-- it makes no sense.
My EPO levels also point away from PV, as they are high. So, yes, my brilliant oncologist diagnosed me with PV based solely on the JAK mutation, while I am the OPPOSITE of two of the other criteria, and have never had a bone marrow biopsy.
@simple27 -- Agree that my anemic hematocrit points AWAY from PV. I wish I could convince my oncologist of how ridiculous this diagnosis is. Almost like saying "you are obese because you weigh 80 pounds." I suppose it is POSSIBLE to have masked polycythmia vera, but that's usually only true if there is substantial, consistent bleeding. But, in any case you cannot DIAGNOSE PV BASED on a low hematocrit-- it makes no sense.
My EPO levels also point away from PV, as they are high. So, yes, my brilliant oncologist diagnosed me with PV based solely on the JAK mutation, while I am the OPPOSITE of two of the other criteria, and have never had a bone marrow biopsy.
I just hope this isn't preventing you from getting the correct treatment/relief. I would imagine it does and understand your frustration. I have the exact opposite situation. High hemoglobin and hematocrit, low EPO but no JAK2 mutation. According to a DNA report that I just ran the other night, I do have variants in my JAK2 genes so I emailed my hematologist to ask if that would be helpful in a diagnosis. I'm pretty sure he doesn't like me much because I am VERY proactive in my healthcare. Have to be. I'm just a number to these doctors.
I just hope this isn't preventing you from getting the correct treatment/relief. I would imagine it does and understand your frustration. I have the exact opposite situation. High hemoglobin and hematocrit, low EPO but no JAK2 mutation. According to a DNA report that I just ran the other night, I do have variants in my JAK2 genes so I emailed my hematologist to ask if that would be helpful in a diagnosis. I'm pretty sure he doesn't like me much because I am VERY proactive in my healthcare. Have to be. I'm just a number to these doctors.
@simple27 I took my promethease jak2 variant information with me to my Dr appointment. I’m showing three areas of increased risk. I’m now waiting for Jak2 lab results. Blood was drawn last Thursday (feb14) at Mayo, any idea on the turn around time for results there?
@simple27 I took my promethease jak2 variant information with me to my Dr appointment. I’m showing three areas of increased risk. I’m now waiting for Jak2 lab results. Blood was drawn last Thursday (feb14) at Mayo, any idea on the turn around time for results there?
For everyone’s info, I messaged through the patient portal and was told up to 10 days for Jak2 results. But the nurse suggested I check in at 7 days in case it is available. Wonder why it takes so long.
@simple27 I took my promethease jak2 variant information with me to my Dr appointment. I’m showing three areas of increased risk. I’m now waiting for Jak2 lab results. Blood was drawn last Thursday (feb14) at Mayo, any idea on the turn around time for results there?
For everyone’s info, I messaged through the patient portal and was told up to 10 days for Jak2 results. But the nurse suggested I check in at 7 days in case it is available. Wonder why it takes so long.
I am a healthy 26 y.o. male. Last week, I went to my doctor for my annual check-up and a CBC was run. RBCs (6.13), hematocrit (50.3%), and hemoglobin (18.4) values were all slightly elevated. WBCs, platelets, and all other lab values were normal. The doctor mentioned that this could potentially be hemochromatosis or PV, and referred me onto a hematologist for further evaluation.
Is it possible that these lab results were due to lab error or dehydration when the blood was taken? My CBC from last year had very similar results in these values, yet WBCs were elevated at that time as well. Also, would blood values be expected to be a lot higher than what mine are to become a concern for a PV diagnosis?
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@simple27 -- Agree that my anemic hematocrit points AWAY from PV. I wish I could convince my oncologist of how ridiculous this diagnosis is. Almost like saying "you are obese because you weigh 80 pounds." I suppose it is POSSIBLE to have masked polycythmia vera, but that's usually only true if there is substantial, consistent bleeding. But, in any case you cannot DIAGNOSE PV BASED on a low hematocrit-- it makes no sense.
My EPO levels also point away from PV, as they are high. So, yes, my brilliant oncologist diagnosed me with PV based solely on the JAK mutation, while I am the OPPOSITE of two of the other criteria, and have never had a bone marrow biopsy.
I just hope this isn't preventing you from getting the correct treatment/relief. I would imagine it does and understand your frustration. I have the exact opposite situation. High hemoglobin and hematocrit, low EPO but no JAK2 mutation. According to a DNA report that I just ran the other night, I do have variants in my JAK2 genes so I emailed my hematologist to ask if that would be helpful in a diagnosis. I'm pretty sure he doesn't like me much because I am VERY proactive in my healthcare. Have to be. I'm just a number to these doctors.
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3 Reactions@simple27 I took my promethease jak2 variant information with me to my Dr appointment. I’m showing three areas of increased risk. I’m now waiting for Jak2 lab results. Blood was drawn last Thursday (feb14) at Mayo, any idea on the turn around time for results there?
For everyone’s info, I messaged through the patient portal and was told up to 10 days for Jak2 results. But the nurse suggested I check in at 7 days in case it is available. Wonder why it takes so long.
@thlas1971 Hi there! Sorry for the late reply. I uploaded my 23 and Me raw data onto livewello and these are my JAK2 results...
Results meaning...
@thlas1971 My results took 4 days...
See dates...
I came back negative for jak2 v617f, CALR and MPL. I’m waiting for directions on next steps.
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1 ReactionHello all.
I am a healthy 26 y.o. male. Last week, I went to my doctor for my annual check-up and a CBC was run. RBCs (6.13), hematocrit (50.3%), and hemoglobin (18.4) values were all slightly elevated. WBCs, platelets, and all other lab values were normal. The doctor mentioned that this could potentially be hemochromatosis or PV, and referred me onto a hematologist for further evaluation.
Is it possible that these lab results were due to lab error or dehydration when the blood was taken? My CBC from last year had very similar results in these values, yet WBCs were elevated at that time as well. Also, would blood values be expected to be a lot higher than what mine are to become a concern for a PV diagnosis?
Thank you for your time!