Polycythemia Vera

Posted by atir @atir, Nov 30, 2018

Have been diagnosed with polycythemia Vera recently, Any feed back

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?

@JustinMcClanahan

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?

Jump to this post

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.

@atir

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.

Jump to this post

@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.

@atir

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.

Jump to this post

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.

Liked by thlas1971, simple27

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?

@apr931

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.

Jump to this post

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?

Liked by simple27

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.

Liked by simple27

@apr931

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.

Jump to this post

Hello @apr931, you may noticed I merged you discussion with an existing discussion on Polycythemia Vera. I did this so your message would be seen by members like @chadknudson, @atir, and @juiceinjc who have all talked about being diagnosed with PV.

@apr931, asking for a seeking a second opinion in your situation seems reasonable if you are curious about the complex numbers that either confirm or rule out your diagnosis of polycythemia vera. Is this something you would ask your current provider for, or seek on your own?

Hello to all, I am new to this and trying to get a better understanding of PV and the wait and watch scenario vs the let treat and move forward. In late 2017 I had a venous sinous thrombosis on the left side of my brain. After 5 days in ICU it was resolved. During my stay the Drs had decided that I had PV. Thats fine, lets treat it and move forward, Im fine with that, after all I have already kicked the crap out of Oliogostrocytoma a few times. My Hemat was at 62 My Hemo was at 18 RBC elevated WBC elevated etc. I had a few Phlebotomies while I was in the hospital, no big deal. I've done all of my many follow up visits with both primary and hematologist, extensive testing with bone marrow biopsy, special testing that only Mayo can do for genetic testing and everything comes up JAK2 Negative, but yet my number continue to climb every 10-14 days. Within the last 16 months I have had 28 Phlebotomies, which I think is a lot. I have done some research on my own and found were you can be PV Positive with a JAK2 Negative test result. I am lookin for a little guidance on next steps, any help is greatly appreciated. Jeff

@jeffc4365

Hello to all, I am new to this and trying to get a better understanding of PV and the wait and watch scenario vs the let treat and move forward. In late 2017 I had a venous sinous thrombosis on the left side of my brain. After 5 days in ICU it was resolved. During my stay the Drs had decided that I had PV. Thats fine, lets treat it and move forward, Im fine with that, after all I have already kicked the crap out of Oliogostrocytoma a few times. My Hemat was at 62 My Hemo was at 18 RBC elevated WBC elevated etc. I had a few Phlebotomies while I was in the hospital, no big deal. I've done all of my many follow up visits with both primary and hematologist, extensive testing with bone marrow biopsy, special testing that only Mayo can do for genetic testing and everything comes up JAK2 Negative, but yet my number continue to climb every 10-14 days. Within the last 16 months I have had 28 Phlebotomies, which I think is a lot. I have done some research on my own and found were you can be PV Positive with a JAK2 Negative test result. I am lookin for a little guidance on next steps, any help is greatly appreciated. Jeff

Jump to this post

I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased — I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high — my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).

@chadknudson

I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased — I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high — my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).

Jump to this post

Thanks Chad, my threshold is 45 as well. I maintain a very healthy diet as well. I am very fortunate to have a wife that is a RN and yes she stays on my A$$ daily about my intake and exercise. I try to do everything as right as I can but nothing seems to work. There has been a lot of talk with my Drs about starting the Hydroxyurea and I am fine with that. I am just getting a little tired of the wait and see approach as well as all the phlebotomies. I guess I'm also looking for other avenues of therapy. The last thing I want is to throw another clot.

Hi,
Just diagnosed with Polycythemia Vera on Friday. Negative JAK2 test, but other genetic changes noted on bone marrow biopsy. Had my first phlebotomy done Friday as well. Hemoglobin is 18.8, Hematocrit 58.9. Have some of the symptoms, fatigue, bruising, shortness of breath, etc. My first EPO was normal, but late Friday got a repeat back showing high 61. Now I'm not to sure what's going on! Hopefully will speak with the Hematologist on Monday. Haven't gotten the repeat JAK2 back yet either. Just wanted to check in!

@gjb1

Hi,
Just diagnosed with Polycythemia Vera on Friday. Negative JAK2 test, but other genetic changes noted on bone marrow biopsy. Had my first phlebotomy done Friday as well. Hemoglobin is 18.8, Hematocrit 58.9. Have some of the symptoms, fatigue, bruising, shortness of breath, etc. My first EPO was normal, but late Friday got a repeat back showing high 61. Now I'm not to sure what's going on! Hopefully will speak with the Hematologist on Monday. Haven't gotten the repeat JAK2 back yet either. Just wanted to check in!

Jump to this post

@gjb1 – My EPO is high as well. In my case the high EPO makes sense, given my hematocrit is anemic. I'm still confused by my PV diagnosis, given now the only criteria I meet is that I have the JAK2 mutation. Feels a bit to me like an "eeny-meeny-miney-mo" diagnosis. It could be possible that I'm in early stage PV, but, currently there is no bone marrow biopsy to confirm that, and two of the bloodwork parameters (hematocrit/hemoglobin and EPO levels) are contradictory to the diagnostic criteria.

@apr931

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?

Jump to this post

@apr931 Hi there! I wanted to chime in on your question regarding the number 32. I have no idea where that came from. As of your post that I am responding to, where your hemoglobin was 10.7 and hematocrit 33, both of those results are below normal. For a man and for a woman. Polycythemia vera diagnostic criteria includes one of which that is a highly elevated hemoglobin and hematocrit. Which you do not have. However, another diagnostic criteria for PV is the JAK2 mutation. I'm guessing your PV diagnosis was based solely on the JAK2 mutation, which would be inaccurate according to your hemoglobin & hematocrit levels. Throughout my extensive research into PV and myeloproliferative disorders in general, your particular results seem to point more towards essential thrombocythemia (ET), or primary myelofibrosis (PMF). Your low hemoglobin and hematocrit point away from PV. The diagnostic criteria for PV was recently-ish revised in 2016, and still your low hemoglobin/hematocrit levels point away from PV. Bless you & fight the good fight! Just trying to provide some (hopefully) helpful information. 🙂

@apr931

@gjb1 – My EPO is high as well. In my case the high EPO makes sense, given my hematocrit is anemic. I'm still confused by my PV diagnosis, given now the only criteria I meet is that I have the JAK2 mutation. Feels a bit to me like an "eeny-meeny-miney-mo" diagnosis. It could be possible that I'm in early stage PV, but, currently there is no bone marrow biopsy to confirm that, and two of the bloodwork parameters (hematocrit/hemoglobin and EPO levels) are contradictory to the diagnostic criteria.

Jump to this post

A high EPO is indicative of secondary polycythemia. Those with polycythemia vera (primary polycythemia) have low EPO levels. Cheers! 🙂

Please login or register to post a reply.