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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 19 hours ago | Replies (399)

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@christinepcv

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?

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Replies to "Hello I was diagnosed 5 years ago. I am a 59 y/o female. My platelets are..."

Welcome Christine, I moved your "just diagnosed" message to this existing discussion of the same name:
- Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/

I did this so you can read previous posts and connect easily with members like @pv17082022 @buckaroobanzai @jerrlin @lindaw123 @jwn8700 @fishergramma @hope19 @stljack @mattymatilda and many more. They may also be able to give feedback on your numbers, itching and fatigue tips.

You may also be interested in these related discussions:
- Polycythemia: Primary or Secondary? https://connect.mayoclinic.org/discussion/polycythemia-primary-or-secondary/
- PV Itching Not After Bathing https://connect.mayoclinic.org/discussion/pv-itching-not-after-bathing/
- Polycythemia Vera: Is there anything I can do for fatigue at home? https://connect.mayoclinic.org/discussion/fatigue-2/

What helps relieve the itching?

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.