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

@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?

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.

Hello
I am just starting phlebotomy treatment this week for Hereditary Hemochromatosis (with the HFE gene). My Ferritin is 500. I also have Thrombocythemia (high platelets/ Jak2) and I am taking Hydrea 500 mg daily for last 6 weeks. I'm curious how this will progress, as Hydrea is already reducing my blood counts (RBC, WBC, and HGB along with platelets) and the phlebotomy will (I think) do the same. Currently my HGB is good (13) and I understood I can have phlebotomies until it reaches 11. The plan is to have a phlebotomy every 3 weeks if the blood count numbers permit. The goal is to get Ferritin in the 50 - 100 range. Please share any insights or advice. I'm also curious how often you have phlebotomies, and how much does the Ferritin drop with each? Does it cause ongoing fatigue? thanks!

Hi:

Thanks for sharing. Our situations are a bit different beyond the hemochromatosis, so I can really only speak to phlebotomy from my own experience.

Mine were spaced anywhere from 4 to 12 weeks, depending on my blood counts. Because I also have anemia, getting my hemoglobin up to 11 was difficult, so my doctors used 10.5 as the threshold.

I did phlebotomies for about 3 years. They were effective at lowering my iron, but we eventually had to stop because they made me too anemic.

I never had issues with the procedure itself and generally felt fine afterward. I was told lowering iron can help with fatigue, and that seemed true for me.

My case is non-HFE with anemia, so it may be managed a bit differently than yours, but I hope this helps.

@jfranz60 I have HH and yes my doctor wants my Ferritin between 50 and 100. Initially I had 250cc taken or about 1/2 pint. I’ve had 500cc taken. I’m told it isn’t uncommon to get faint from this amount . From my experience I was fatigued after the 500cc. Myself and others have also felt really good after a phlebotomy. Good to read your getting treatment.