Anyone with PV have insensitivity to cold?

Posted by djab @djab, Dec 16, 2022

I was Dx. with polycythemia vera several years ago, and has been managed well with Hydroxyurea, last summer I was unable to handle the heat outside and have noticed this winter I can not feel the cold on my skin, Lately short of breath excersion, Lightheaded in the morning, My MD seems to think it is not related to my DX, asked if the red blood cell is changed with this medication, she said the cell is bigger. Been to a endocrinologist labs totally normal. Now heading to a neurologist. Just wondering if anyone else has had any of these symptoms..

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Colleen Young, Connect Director | @colleenyoung | Dec 16, 2022

@djab, interesting question. I'm tagging other members who have polycythemia vera to see if they have a similar insensitivity to the cold, members like @bluontene @jwn8700 @lindaw123 @tlsantin @hope19 @learnandlive @vmg44 @kibbykyle @buckaroobanzai @fishergramma.

You may also be interested in connecting with other PV-ers in these related discussions:
– Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
– Polycythemia Vera: Is there anything I can do for fatigue at home? https://connect.mayoclinic.org/discussion/fatigue-2/

djab, do you think that the temperature sensitivity and insensitivity might be related to hydroxyurea rather than PV itself?

buckaroobanzai | @buckaroobanzai | Dec 16, 2022

I have not experienced these symptoms and so cannot relate to your situation - which leads me to wonder and ask: Could these be side-effects directly related to hydroxyurea?

pamdg | @pamdg | Dec 17, 2022

Intolerance to heat and cold is definitely a PV problem. People in my support group all complain of this.

randles14 | @randles14 | Dec 18, 2022

So far just heat for me. And I live in the Midwest with heat/humidity. It’s miserable. Lol

djab | @djab | Dec 18, 2022

In reply to @colleenyoung "@djab, interesting question. I'm tagging other members who have polycythemia vera to see if they have..." + (show)

YES, I think the red blood cell has been mutated and does not carry enough healthy hemoglobin to the cells, I started taking Metanx (active form of B12) and has helped so much with fatigue and dizziness. Also mutivitamin is a must also...

djab | @djab | Dec 18, 2022

In reply to @randles14 "So far just heat for me. And I live in the Midwest with heat/humidity. It’s miserable...." + (show)

I have never had a problem with heat until this year and it was completely intolerable, could not go out side after 10am, live in GA.... then I noticed I could not really feel the cold

dale1k | @dale1k | Dec 18, 2022

I seem to have the opposite problem.. Diagnosed in March 2021 with PV and on Hydroxyurea as well.. I can handle the heat but protect against the sun, but I am overly sensitive to the cold.. Specifically, my hands and especially my fingers… Cold weather requires gloves…

nathancarson81 | @nathancarson81 | Dec 18, 2022

I have PV, live in Iowa... It gets cold. I don't feel it. I also have Psoriasis all over my body. I've had Psoriasis for years, was Dx with PV 5 years ago. I can walk barefoot in snow and not feel the cold. So, don't know if it's a combination of both or what. I feel ya.

lildoggy | @lildoggy | Dec 19, 2022

Yes. It seems that blood near the surface of my skin showing almost a flushed appearance also keeps me warmer than other people in my household. There have been many times family members have not understood how I could comfortably be outside without bundling up like they are. An exception would be my feet - they do get cold.

angeluvstrent2022 | @angeluvstrent2022 | Dec 20, 2022

Hi there, I've only just recently been diagnosed with PV and I don't feel the cold at all. I've not felt the cold in 10 years. Not sure how long I've had PV but I'm 46 now. I sweat a lot in the mornings too. I've seen an endocrinologist in the past about the sweats/not feeling cold but they have no answers for me.