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.
Hello
I was diagnosed 5 years ago.
I am a 59 y/o female.
My platelets are now over 700
My ferritin is 5.
My Doc does not seem concerned.
I deal w a great deal of itching and fatigue...
Are these numbers safe?
Hey Christine...I am 49, diagnosed with PV about a year and half ago. Have very similar symptoms. My platelets are also just over 700, my ferritin is 4, my iron is 39. My hemoglobin last check was 12.6 and hematocrit was 45. In the past, I've been able to go 9 months w/o a phlebotomy with just taking 162mg of aspirin a day. The difficult part of all of my symptoms is the fact that I am also perimenopausal. Joints hurt occasionally, brain fog, and the worst is the hot flashes and sleeping. Im really fidgety at night when trying to fall asleep. I was told by my hematologist that I could take iron suppliments 3 times a week and could take medication to help with hot flashes and such. I was also told by my good friend who is an oncology PA that the reason my platelets are high and Im so fidgety is because my iron is so low. She questions why I haven't had an iron transfusion. I just don't know what to do, as I have also read that you don't want to take any iron suppliments. My doctor said that we will be monitoring and adjusting for a long time and if numbers rise we'll just do a phlebotomy. I did watch a female doctor who has PV and went through menopause that hormone therapy is fine as long as it's topical and not ingested. Would love to hear others that are in the same boat.
Hey Christine...I am 49, diagnosed with PV about a year and half ago. Have very similar symptoms. My platelets are also just over 700, my ferritin is 4, my iron is 39. My hemoglobin last check was 12.6 and hematocrit was 45. In the past, I've been able to go 9 months w/o a phlebotomy with just taking 162mg of aspirin a day. The difficult part of all of my symptoms is the fact that I am also perimenopausal. Joints hurt occasionally, brain fog, and the worst is the hot flashes and sleeping. Im really fidgety at night when trying to fall asleep. I was told by my hematologist that I could take iron suppliments 3 times a week and could take medication to help with hot flashes and such. I was also told by my good friend who is an oncology PA that the reason my platelets are high and Im so fidgety is because my iron is so low. She questions why I haven't had an iron transfusion. I just don't know what to do, as I have also read that you don't want to take any iron suppliments. My doctor said that we will be monitoring and adjusting for a long time and if numbers rise we'll just do a phlebotomy. I did watch a female doctor who has PV and went through menopause that hormone therapy is fine as long as it's topical and not ingested. Would love to hear others that are in the same boat.
Wow! Finally a person on here who has PV and is going through menopause! Girl it has been a crazy ride! I was diagnosed two years ago this Jan. I am 58. I had a hysterectomy with ovaries left in, in my 30’s and began menopause late at 55. The aches and pains, hot flashes and crazy pins and needles, tingling have just made my PV worse. PV can cause all kinds of crazy stinging and burning, especially in your extremities so I haven’t a clue which is causing what? It doesn’t matter except if it’s menopause I can hope it will go away at some point. As far as any kind of hormone therapy, I was told a big NO from my oncologist. Even creams absorbed through the skin can increase clot risk and we are already at high risk for blood clots. Please ask your doctor about taking Clonidine .5 mg for the hot flashes. It has lessened mine by about 70% Its a very low dose BP med that’s been around forever. My BP has always been normal and it just lowered it slightly so I’m doing well with it. Taking it for about 10 months. One in morning and one at night. Also it’s very cheap if you don’t have prescription coverage.Theres a non hormonal one that just came out but can effect your organs so I wouldn’t want to take that one. Stay positive and try not to worry. I’ll check back to see how you’re doing. Good luck!
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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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1 ReactionHey Christine...I am 49, diagnosed with PV about a year and half ago. Have very similar symptoms. My platelets are also just over 700, my ferritin is 4, my iron is 39. My hemoglobin last check was 12.6 and hematocrit was 45. In the past, I've been able to go 9 months w/o a phlebotomy with just taking 162mg of aspirin a day. The difficult part of all of my symptoms is the fact that I am also perimenopausal. Joints hurt occasionally, brain fog, and the worst is the hot flashes and sleeping. Im really fidgety at night when trying to fall asleep. I was told by my hematologist that I could take iron suppliments 3 times a week and could take medication to help with hot flashes and such. I was also told by my good friend who is an oncology PA that the reason my platelets are high and Im so fidgety is because my iron is so low. She questions why I haven't had an iron transfusion. I just don't know what to do, as I have also read that you don't want to take any iron suppliments. My doctor said that we will be monitoring and adjusting for a long time and if numbers rise we'll just do a phlebotomy. I did watch a female doctor who has PV and went through menopause that hormone therapy is fine as long as it's topical and not ingested. Would love to hear others that are in the same boat.
Wow! Finally a person on here who has PV and is going through menopause! Girl it has been a crazy ride! I was diagnosed two years ago this Jan. I am 58. I had a hysterectomy with ovaries left in, in my 30’s and began menopause late at 55. The aches and pains, hot flashes and crazy pins and needles, tingling have just made my PV worse. PV can cause all kinds of crazy stinging and burning, especially in your extremities so I haven’t a clue which is causing what? It doesn’t matter except if it’s menopause I can hope it will go away at some point. As far as any kind of hormone therapy, I was told a big NO from my oncologist. Even creams absorbed through the skin can increase clot risk and we are already at high risk for blood clots. Please ask your doctor about taking Clonidine .5 mg for the hot flashes. It has lessened mine by about 70% Its a very low dose BP med that’s been around forever. My BP has always been normal and it just lowered it slightly so I’m doing well with it. Taking it for about 10 months. One in morning and one at night. Also it’s very cheap if you don’t have prescription coverage.Theres a non hormonal one that just came out but can effect your organs so I wouldn’t want to take that one. Stay positive and try not to worry. I’ll check back to see how you’re doing. Good luck!
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