ET and high ferritin levels with increase fatigue

Posted by alikay @alikay, Jan 30 7:40am

Diagnosed with ET 9/25. On hydroxyurea and 81 mg aspirin. Had an iron infusion in mid September. Now ferritin is above 550 and iron high.
Have increased fatigue, extreme arm weakness and burning feeling in my feet.
Anyone else experience this?

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janemc | @janemc | Jan 31 6:43am

Hello! Just wanted to say, fatigue is built into ET and all the other MPNs.

As our mis-programmed bone marrow produces too many cells, we're drained of our energy.

Accept it, let yourself rest when you need to. Take breaks, take a nap, give yourself more time to accomplish tasks.

I hope that as it did for me, HU will bring down your platelet count and restore your strength.

Also hope others with high iron or ferritin levels will chime in to share their experiences.

nohrt4me (Jean) | @nohrt4me | Jan 31 7:26am

Burning feet is called erythromelalgia. I also get it on the palms of my hands sometimes. Extremities can also get icy cold. Very common in ET patients.

I have an exercise bike I use for 30-45 minutes a day while I read. This improves circulation and reduces severity of erythromelalgia. You might also consider wearing compression stockings. I keep a hot water bottle filled with cool water in my bed so that if my feet flare at night, I can put them on that and get back to sleep.

Basically keep your extremities clean, warm, and moisturized. I knitted some half mitts to wear if I'm just sitting around the house in winter. Made the cuffs extra long. I also lined my house slippers with wool felt insoles. Keeps feet at uniform temp.

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