Non-HFE hemochromatosis (or high iron levels) while having Anemia

Posted by paulphoenix @paulphoenix, Dec 5, 2025

As a start, I am wondering if there are others with non-hereditary hemochromatosis who are also anemic. It seems a paradox to have two opposing conditions. While phlebotomies were working well to reduce my iron levels, the procedure appears to be worsening my anemia (reduced hemoglobin levels) to the point that, for the time being, I cannot safely receive a phlebotomy until my hemoglobin levels rise. Is anyone else in a similar situation? If so, I would like to discuss how you are being treated. It would be great if I could compare notes with others who are managing a similar scenario.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Colleen Young, Connect Director | @colleenyoung | Dec 18, 2025

@paulphoenix, what a paradox. It sounds almost impossible to have both hemochromatosis (iron overload) and anemia (iron deficiency).

What level do you hemoglobin levels have to reach before you can treat with a phlebotomy? What symptoms do you have due to the hemochromatosis as you wait?

paulphoenix | @paulphoenix | Dec 19, 2025

Hi Colleen, thank you for your response.

My condition seems to have perplexed more than one physician. There is enough information available online to suggest that I am not alone in experiencing this.

Previously, my hemoglobin needed to be at least 11 in order to receive phlebotomies, and that approach worked well for about a year. When my hemoglobin levels stopped reaching 11, my doctor adjusted the threshold to 10.5, which again worked for roughly another year.

For the past six months, however, my hemoglobin has not reached 10.5 and is currently around 10. While my iron levels continue to rise, I am unable to receive phlebotomies due to the hemoglobin cutoff, leaving me in a difficult position.

I am not experiencing any symptoms, which makes this even more perplexing. My elevated iron (283), iron saturation (>94%), and ferritin (193)—current values—were discovered while trying to better understand longstanding anemia, which I have had for many years.

I will be seeing my doctor again in about a month, but in the meantime this situation is concerning, as I am being told that this excess iron needs to be removed from my body (in my layman’s terms). That’s why I was interested in learning, through Mayo Connect, how others with a similar condition are being managed.

It’s also important to note that I do not carry the HFE gene mutation; my diagnosis is non-HFE hemochromatosis.

Thank you again for taking the time to read and respond.

Please sign in or register to post a reply.