Iron overload, or hemochromatosis

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.

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.

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

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.

I feel for you. I have only one of the genes. However I developed porphyria cutanea tarda and have been receiving phlebotomy treatment for several months. My iron is now down to the correct level. I've been told that the level will probably go up again since iron is in so many foods. Best of luck to you.

I was diagnosed with hemochromatosis when I was 32. I would highly recommend you go to the iron disorders Institute website.

For the best information and forms to give your doctor about specific tests that should be performed. Many patients do not get the full number of tests and the condition is either misdiagnosed or not properly addressed.

If treated correctly you should see relief from many of your symptoms over the next 3 to 12 months. All of your symptoms are common with hemochromatosis.

As noted by others in this thread, phlebotomy is the most common treatment. Where doctors who aren’t fully aware of how to treat this condition make mistakes is in the frequency of the treatment and often ignore the hemocrit or transferritin levels. It is very easy to over treat or under treat the condition, especially for somebody who is newly diagnosed which is why a hematologist with experience in treating hemochromatosis is very important. Good luck and while it is a serious illness, it can be managed and is actually fairly common at your age.

Arthritis, fatigue, and depression. Oh, I didn’t forget stress.Yes you have many symptoms of hemochromatosis there are many many more which you will be finding out if you have hemochromatosis plus as you read on, you’ll see some of us with hemochromatosis will let you in on how we’ve been suffering over the years here’s just more to throw at you brain fog!! It sucks I feel as if I have dementia after your first phlebotomy which will be one of many I was diagnosed in 2003 and once a week I would get a phlebotomy this lasted 64 weeks yes once a week for like 15 months that’s how long it took to get my iron levels down now I go and get what they call maintenance phlebotomy I go every 6 to 8 weeks about 6to 8 a year

Welcome to Connect, @cakes. After reading your bio this morning, I so very sorry for your loss. I can’t imagine losing a child and you’ve received a double blow of both a daughter and son! There’s nothing that can prepare us for a tragedy of that proportion. I hope you find peace and healing over time.
Thank you for sharing your experience with hemochromatosis. It sounds like you’ve gotten iron levels to a reasonable level with the frequent initial phlebotomies and now down to just maintenance phlebotomies. Do you have any dietary restrictions?

Yes I have many dietary restrictions starting with red meat, vegetables fruit the list goes on and on everything we eat has iron in it basically like everything we it must be in moderation or a little less than moderation. That’s one way your iron intake can be lowered.

They suspected my son had hemachromatosis.. labs showed positive.. I was tested. Showed positive. Mayo checked his labs and was not genetic type. I have no symptoms.

Fred Hutchinsons did fsrther testing and he showed Neg for hemachromatosis. Talk about confusion..

I did remove all high iron foods with him.. Iron levels normal. Now they say he needs liver transplant from non alcoholic fatty liver.. AND Spleen removal... keeps enlarging. Ascites which draimed on its own which is not heard of.. Seems ER visits and high steroids, gcsf shots to raise his white cells, are all causing more problems.. are they absolutely positive you have this and not on some additional treatments?. And curiois, is this an underlying cause? I get more confused to docs wanting to inject infusions and not find the underlying condition to stop adding more symptoms to my son..