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Iron overload, or hemochromatosis

Posted by jenny0218 @jenny0218, Mar 6 5:45pm

Hi, I’m a 65 year old woman. I just had a routine blood lab work and my iron level is 3-4 times higher than it should be. I’m testing tomorrow for the hemochromatosis gene. I’m scared of what this is.
Most of my health complaints I attribute to age as well as the past 5 years of high stress—arthritis, fatigue, depression, and chest pressure.
Thanks for any info and help.

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kathymiami | @kathymiami | Mar 15 12:56pm

Is that the only blood test that is not normal?
My Dr also ran other iron tests...he said one was not enough.

I was just tested for the Hemo Gene...and from my reading the results, I have two of the H63D gene. One gene from my father (who had Hemochromatosis)
and shockingly one gene from my mother - who was barely sick a day in her 92 years. None of my parents' families had/have the illness. I have not met with my Doc yet to review the results.

I was doing some reading from reliable sites and it is common for those with northern European descent to carry one of the 3 different kinds of gene. You can carry the gene but never get symptoms. It seems that "donating" blood is the only remedy.

I hope you get some reassuring answers soon.

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kayabbott | @kayabbott | Mar 16 8:51am

I was tested for hemochromatosis 9 years ago due to elevated ferritin (iron), which can build up in organs over time and cause problems. My test was negative, and the ferritin was due to a medicine I'd been taking for decades that was metabolized by and affected my liver enzymes. I switched meds and my liver was happy again (not sure what a happy liver emoji would look like). I donated blood a few times that year and my ferritin levels went back to normal and stayed there. I'm 70, and the iron buildup was possibly also associated with menopause (an absence of blood letting). With hemochromatosis one can't donate blood for others to use, but it still can be controlled by blood draws. I imagine in the old days leeches would work, but phlebotomists are so much nicer and they give you cookies afterwards.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 17 9:11pm

Hi @jenny0218, did you get the results of further testing? What did you find out?

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kathymiami | @kathymiami | Mar 18 3:51pm
In reply to @kayabbott "I was tested for hemochromatosis 9 years ago due to elevated ferritin (iron), which can build..." + (show)
@kayabbott

I was tested for hemochromatosis 9 years ago due to elevated ferritin (iron), which can build up in organs over time and cause problems. My test was negative, and the ferritin was due to a medicine I'd been taking for decades that was metabolized by and affected my liver enzymes. I switched meds and my liver was happy again (not sure what a happy liver emoji would look like). I donated blood a few times that year and my ferritin levels went back to normal and stayed there. I'm 70, and the iron buildup was possibly also associated with menopause (an absence of blood letting). With hemochromatosis one can't donate blood for others to use, but it still can be controlled by blood draws. I imagine in the old days leeches would work, but phlebotomists are so much nicer and they give you cookies afterwards.

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Hi. I was contacted by mail to donate blood. I used to donate somewhat frequently.
I called them to take me off the list for now until I get his Hemochromatosis figured out,
and I was told that we are able to donate under certain circumstances.

I googled it and found:

Eligibility Criteria:
Must be in good health and meet all standard blood donor requirements.
Must be undergoing regular phlebotomy (bloodletting) treatment for hemochromatosis.
Iron levels must be within the acceptable range for blood donation.
Must have a doctor's note confirming their eligibility to donate.

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