“It could be your life on the line!”
Move over Robert Downey Jr, I am the real Iron Man!
It all started back in 2002 after repeated trips to my family doctor asking “Why am I so tired? Why is my skin grey? Why do my two fingers and knuckles hurt so much if I touch them?”
After getting the regular rolling-the-eyes routine and “What are you here for this time, Rick?” questions, I decided enough was enough and asked to see someone else. After a few months of waiting and being put on iron pills, I met with a doctor who took one look at me and said, “I’m pretty sure I know what’s wrong with you, Rick.” After a bunch of blood work and a DNA test, I was called back in about a week or so later. The doctor’s hunch was dead on: I have hereditary hemochromatosis. He informed me that my ferritin levels were off the charts at 20,000 ng/mL! He said he had never seen such high levels and told me I was lucky I wasn’t dead. If I had been a drinker, I probably wouldn’t be around to write this.
The specialist informed me hemochromatosis mimics other diseases so it was hard for family doctors to diagnose. When your skin turns grey, you lose your hair and have severe liver pain, you know something isn’t right with yourself. That’s why I persisted on going back to the doctor on a regular basis.
For my treatment, I was put on an extreme regiment of going to the hospital every week for about 5 years to give a pint of blood to get my iron levels down. At the same time, I was having liver biopsies and other tests.
After finding out about my inherited disorder, my brothers decided to get checked as well, resulting in one of them also being diagnosed with hemochromatosis but with a lower serum ferritin level. After doing some research they found out my deceased father had hemochromatosis which may have contributed to his cancer and early death.
It’s now 16 years later, and I’ve had two knee replacements and one ankle replacement, and another ankle surgery to come. I have my ferritin levels down to an acceptable 34! I go every two months to Canadian Blood Services to donate, as they accept blood from hemochromatosis patients. It’s great, keeping my levels in check and giving someone help with a donation.
Doing warehouse work all my life, I’ve had to retire early and go on Canada pension disability due to all my joint replacements and ones to come. I now experience pain in my wrists, feet and other joints as the iron overload has destroyed all the cartilage in most of my body joints, making it hard to find work in any capacity. The excess iron has also damaged my spine to the point where it is pinching nerves and causing very bad itching in both my arms. I now get checked two times a year to monitor all my levels and keep the ferritin at respectable levels. Lucky for me I have a caring loving wife who has been by my side from the beginning, helping me watch the type of food I eat and seeing me through all the surgeries.
Lately I’ve found out I have significant scarring of the liver from the past iron overload. What I’m trying to educate people on is if you feel like you have something wrong with your own body, persist with your doctor as I did and do not stop until you have answers. Hemochromatosis is nothing to joke about, and many people die if not diagnosed in time. I’m one of the lucky ones; I now get to spend time with my two beautiful grandchildren and loving family. I sometimes feel depressed not being able to work and being in constant pain, but I always look at the bright side… I’m still here!
If you have symptoms like always feeling tired, an odd skin color, painful arthritis or loss of hair, don’t let your doctor put you on iron pills before getting you to do a proper iron saturation test. It could be your life on the line!