PV Iron deficiency and Endurance

[FourSeasonLover]

I am 65, diagnosed with PV November 2023 (had pulmonary embolus). I am on Hydrea and all blood counts are now normal.

My usual activity has included a lot of bicycling, often long hilly rides (50 miles or more) and multiple days in a row. I asked MD if there was anything that might make me feel more tired than in the past (e.g. I often fall asleep after a 2 hour hike) and he said my ferritin level is low and for someone who exercises as much as I do, the iron deficiency likely has an effect.

I started iron supplements under his careful watch of my HCT.

Is there anyone with PV who does a lot of endurance exercise? Was your iron deficiency treated and did it help?

Thanks!

[Confusingdisease]

probably a mixture of fatigue and iron deficiency. Fatigue is a very common symptom with MPN’s

[hunter5582]

I had the same experience when I became very iron deficient with using phlebotomy to control the erythrocytosis. The exercise intolerance was never a problem with the PV. It was the adverse effect of the treatment. My energy levels restored when I started on the interferons and could let my iron levels get higher.

It is worth noting that fatigue is a common adverse effect associated with hydroxyurea. Just to make it more complicated, fatigue is the most common PV constitutional symptom. Sometimes timing is the only clue as to what is causing the symptom.

Wishing you all the best and success moving forward.

[ainslie]

it’s probably a combo of things contributing to fatigue, 92% with PV are fatigued, HU can add to fatigue, low ferritin might add to fatigue depending on how your other iron counts look. If on meds your iron numbers should recover to an extent if not completely depending a bit on which meds you are on. I am on Rux for PV , it took a while for all iron markers to recover from venisection only but now my ferritin, MCV etc are good, I think ferritin is 90 as opposed to maybe 8 on venisection. However I know some long term venisectors who have single digit ferritin but don’t report fatigue, I find that strange because allegedly one needs decent ferritin levels for thyroid to function optimally.

[Bariton]

My treatment during the first 25 years was a phlebotomy every 6 weeks and aspirine. Iron levels were far below the normal minimum and that has not bothered me. The idea is that hemoglobine protein is 'built' around an iron atom, and so if iron is less present in your body, your HCT will stay low. Iron supplements for a PV patient seem like a mistake to me. I ran twice a week 12 or 15 kms. I am 70 years old now and I reduced my exercise, but we walk and cycle. Staying fit is my way to cope with this disease. The last few years I started to feel fatigue but for me low Iron is not the cause. I am on a combination of 1 Hydrea per day and a phlebotomy every 2 months.