I am a woman of Ukrainian, Austrian, German and Italian descent. I recently retired from nursing due to health issues. Neither of my parents showed any obvious signs of hemochromatosis, although two of my brothers and I have two gene mutations, while a third brother carries one mutation. My brother Ray, who had two mutations, died from pancreatic cancer in 2008. Brother Ed who is the carrier is disabled and has liver disease. We feel his illness is caused by iron levels which are too high, but the levels are considered acceptable by his doctors. Brother Al was originally diagnosed with hemochromatosis when he turned “grey”. His ferritin was in excess of 3,000 ng/mL when he was diagnosed in the late 1990s. We had then all been diagnosed. Al is still having routine phlebotomies. His medical issues include having both hips replaced when he was 50 yrs old, no cartilage in his shoulders, gout and GI problems. He works but his job has been modified to accommodate his condition.
I was lucky in the sense that I was female and menorrhagic (who knew it was my saving grace although incredibly inconvenient). My ferritin was only around 98 but so was my transferrin saturation, at 98%. Four weekly phlebotomies brought my ferritin down to 4 ng/mL.
For years, I had no issues giving blood at the blood bank. Then, after I was post-menopausal, I donated blood and became septic a week later. The next time I donated, I developed GI problems which persisted for months. I eventually ended up in the Emergency room with severe abdominal pain to the point that I had stopped eating. The doctor said I had a slight inflammation of the liver on palpitation, and other than a high inflammatory marker, nothing showed in the bloodwork and ultrasound.
Since then I was hesitant about going to the blood bank. I inquired with my hematologist about having less blood removed during my phlebotomies, but was told to go to the blood bank. He felt my illnesses were just a coincidence. I mentioned my problem to my Naturopath who then offered me customized phlebotomies. We tried to arrange a regular schedule, but I almost fainted when 150 cc was removed, so unfortunately I stopped.
In the meantime I devolved severe contact dermatitis of the hands. With treatment it resolved. Two months later, I developed severe airborne contact dermatitis in the face and appeared to be spreading systemically throughout my body. In 2019, things were getting desperate. I was not well. I felt swollen and bloated. My blood was very dark. My Naturopath said my liver was compromised and my GP was telling me my iron was too high and needed to be addressed. Blood bank again? No, not an option at this point!
I started getting serious with health issues. I went on an anti-inflammatory diet. I can now tolerate a 150 cc monthly phlebotomy and seriously considering increasing the amount. It is essential that I get my ferritin levels down. I am fortunate in that I can afford to have it done privately, at least for now. This is a necessary procedure for me, and after all I have been through, I wonder why no one believes me when I say I become ill when the phlebotomy volume is too high?
In 2019 I had another medical crisis in June. Tests showed that I had an old heart attack, whatever that means. I recalled that a few years ago I was having a problem with blackouts, a.k.a. vasovagal syncope, not related to drugs or alcohol. I am wondering if my not-that-high ferritin of less than 200 ng/mL caused my health issues in the past and is still causing them in the present.
The problem with hemochromatosis is that it is silent and insidious. If you look at my brothers, it is a depressing scenario, even with phlebotomy treatments. My ferritin has never been higher than 200 ng/mL that I am aware of and yet I have cardiac and liver problems. Physically I am in better shape than my brothers. Or am I? Would we have been in better shape if the condition been diagnosed earlier in our lives?
I have been reading a book by Dr Steven Gundry, The Longevity Paradox, mainly because he addresses the problems with iron and inflammation. He also suggests that it may be possible to mitigate some of the damage. I think we all would like the simple single answer to our health issues. Wouldn’t it be great if by simply controlling our iron intake and having regular phlebotomies, all our problems associated with iron would be solved? But we have to remember that we are complex human beings. Trillions of biochemical reactions. It is possible that iron and who-knows-what does damage that we currently are not aware of.
At this point in my complicated health journey, my suggestion for you is to know your lab result numbers. Use the Canadian Hemochromatosis Society as a resource for information. It is your body and your responsibility to take care of it. The buck stops here.