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!
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.
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.
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.
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 husband has been diagnosed with PV for 24 years. His has been treated with frequent phlebotomies and medication successfully. His oncologist keeps a close watch on his labs and reviews symptoms every 3 months. There are advances in treatment that can prolong life expectancy so I have learned to only review stats written within the last few years.
Recent update: I was diagnosed 3 years ago/ Jak2 mutation. I had already had a small TIA and was diagnosed with CVST. I’ve been fortunate as these last 8 months I’ve had no need for any phlebotomies and I chose not to go on Hydroxyurea, Very happy I didn’t. I was just at my hematologist and sometimes wonder if perhaps I’ve been misdiagnosed or my PV is very mild. I’m on blood thinners and will probably be on them for life, but that’s fine with me. I have blood work done every three months to gauge my hematocrit level, so far it’s good, will see where it is come Feb.
My husband has been diagnosed with PV for 24 years. His has been treated with frequent phlebotomies and medication successfully. His oncologist keeps a close watch on his labs and reviews symptoms every 3 months. There are advances in treatment that can prolong life expectancy so I have learned to only review stats written within the last few years.
This makes me feel some relief! I’m 57 and was diagnosed this past January. Took about 8 months to get the Hydroxyurea dosage right but for now my numbers are good. It’s key to keep up with the labs and check your numbers. So happy for you that he still going all these years later!
<p>I was diagnosed with pv and put on hu plus baby asprin. Had a few phlebotomy done, ok foe a while also has cll which by some miracle is now in remission with no meds. My dr did a pbs and did not tell me results and now has done another. My cbc was very high platelets and high rbc. they had ne do a phletomy and since i did not hear from dr assume all is well. Does any one know if there is any hope for pv?</p>
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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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2 ReactionsHey 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.
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 ReactionIt may be due to false lab result. Please repeat the test in another lab. I believe the result will turn negative
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.
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 ReactionHow to manage the itch related to Jak-2 Mutation
Recent update: I was diagnosed 3 years ago/ Jak2 mutation. I had already had a small TIA and was diagnosed with CVST. I’ve been fortunate as these last 8 months I’ve had no need for any phlebotomies and I chose not to go on Hydroxyurea, Very happy I didn’t. I was just at my hematologist and sometimes wonder if perhaps I’ve been misdiagnosed or my PV is very mild. I’m on blood thinners and will probably be on them for life, but that’s fine with me. I have blood work done every three months to gauge my hematocrit level, so far it’s good, will see where it is come Feb.
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4 ReactionsThis makes me feel some relief! I’m 57 and was diagnosed this past January. Took about 8 months to get the Hydroxyurea dosage right but for now my numbers are good. It’s key to keep up with the labs and check your numbers. So happy for you that he still going all these years later!
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2 ReactionsHi @bharty615, I moved your post to this active discussion about PV.
- Polycythemia Vera: Just been diagnosed
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can read through some of the previous posts and connect with other members living with PV.
You may also wish to use the Search function to find more discussions related to PV. For example, see this list:
https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=+Polycythemia+Vera+&index=discussions
How are you doing with this new diagnosis?