“If your doctor is stumped and they can’t figure out what your health issue is, get a Ferritin test.”
In early 2013, I started having brain fog and total exhaustion. I would wake up and be so exhausted I couldn’t really function. Doctors said it was depression, but I was really starting to worry.
My doctor sent me to the psychiatrist, who I was already seeing for depression. The funny thing is that he had just happened to read a book by Marie Warder, the founder of the Canadian Hemochromatosis Society, about her husband’s experience with the disorder.
He sent me out for a battery of tests, and he included a Ferritin test. When it came back, my Ferritin level was off the charts. It was up over1,300 ng/mL when you should normally have about 200. At that time, he was pretty sure I had hemochromatosis and so he sent me for the DNA test, and sure enough it came back with a double match.
After diagnosis, the problem was I didn’t know what to do next. The doctors were pretty uneducated about the condition, and they just said “go get your blood checked” and donate blood.
My doctor referred me to a blood specialist but the appointment was more than 11 months away. In the meantime I did as they said and went to donate blood at Canadian Blood Services, but they allow people to give blood only once every two months. In hindsight, the donations weren’t frequent enough to do me any good because I had so much iron in my system that it was starting to really cause major health problems for me.
I ended up suffering through most of the summer before I discovered the book my psychiatrist had talked about, The Bronze Killer. Once I read it I realized, “Wow, I have to do something. This is pretty bad.” I had to take the next steps into my own hands.
I called the Canadian Hemochromatosis Society, and they were phenomenal. I was pretty nervous about the disorder but they put all my fears to rest. They told me what I had to do next. They said, “You need to get in to see a specialist and you need to get de-ironed.”
I had to go back to my doctor and insist on a referral to a particular specialist at VGH. When I went to see him, he scared the pants off me at first because he told me I had five years to live. I’m a young man, being 50 at the time, and all I could think of was “Oh, no.” But I believe he scared me intentionally so that I would take my health into my own personal care and make sure I got through this.
The de-ironing process is very difficult because you have to remove blood every week. I was already exhausted, and these bloodlettings made me feel worse. But I persevered because I had no choice. Now I am de-ironed, and have been maintaining my proper iron levels for two years. I’ve made some other tremendous health changes so that I don’t have to give blood as often anymore.
My message to you is that if your doctor is stumped and they can’t figure out what your health issue is, get a Ferritin test. It’s such a simple check. The Canadian Hemochromatosis Society was my biggest champion. I want people who think they may have this disorder – or who have just been diagnosed – to know that they’re there for you. They’ll answer your questions and provide support.