This is a hidden disease which is so common, yet many people have not even heard of it.
My story begins in Northern BC, in Prince George, where we are fortunate to have our University Hospital. My knowledge of hereditary hemochromatosis began in June of 2018. But wait a minute – it started to affect my health way before that.
I am currently 66 years old, and visit my family doctor (GP) on a regular basis. I had been diagnosed with high blood pressure and Mr. Gout (inflammation in joints in my toes) a few years ago, and have been on medication for a while. I have a complete physical exam annually.
In 2015, during a regular visit, my doctor asked me how much alcohol I consumed, as my liver enzymes were higher than normal. High alcohol use can cause elevated liver enzymes and signal possible liver damage. My consumption did not coincide with the elevated liver enzymes but he may as well have called me a liar. This question was asked of me many times over months as he must have thought I was not telling him the truth. You might be asking WHY I am telling you this. My answer is because hereditary hemochromatosis is a stealth condition that can lead to other diseases. But I felt great!
Over the last 5 years I had exhibited some of the more common symptoms for hemochromatosis, such as joint pain, fatigue and elevated liver enzymes. I assumed that was all a normal part of the aging process. I had not been physically active during my life, unless you count hitting the links.
Needless to say, I packed around a few extra pounds for many years. My GP had always tried to get me to lose weight. In the spring of 2018, my wife and I went to see the doctor, together. On this particular day he asked, “How can I help you to exercise more?”
It is embarrassing to admit that we have addictions; mine is food. To answer his question I replied, “Well, if my feet were not so frigging sore with seemingly thousands of needles poking into the soles of my feet, I might want to do more walking, hiking, etc.” He listened intently as he knew I did not walk the golf course anymore, but rather rode a motorized cart. Then my wife piped up and said, “He is tired all of the time and lays around.”
Boom! It was like the light came on, and my doctor’s mind went elsewhere. He sent me in for more blood work. The next week I went to see him again. He told me he wanted another test to confirm results, and sent me for a DNA test for hereditary hemochromatosis.
After a couple of weeks he called us into his office, where he had the longest face on. All I could think was “Is it cancer??” He informed us it was hereditary hemochromatosis. By this time I had read up on the disease and I was not surprised. I was comforted that we now had an answer. He immediately referred me to an internist. His recommendation was to get my ferritin level down to between 50 and 100 ng/mL, closer to 50. I went in for an ultrasound within weeks, but the results were not conclusive so a CT scan was ordered. There appears to be no permanent injury to my liver. If the iron overload was left undetected, there might have been serious damage.
Before my first phlebotomy my ferritin level was at 2100 ng/ml. Within a few days of my confirmed diagnosis, my weekly phlebotomies started (which is having a pint of blood removed from me), for a duration between June and December. On Dec 18, my ferritin level had dropped to 40 ng/ml. I would rather do this than the chemical chelation. The RNs here at University Hospital of Northern BC were awesome. They had to be patient with me and my hidden veins. My time there was enjoyable; I was getting to be known as the “Iron Man”. We all must keep our humour no matter what diagnosis we receive. Now my ferritin has increased slowly to 52 ng/ml.
Upon reflection over the past few months and years, I have found that since my iron levels have been lowered, the following has happened:
- Itchy abdomen has disappeared
- Chronic splits on my finger-tips which would bleed have stopped
- Pins and needle sensation on my feet has disappeared
- I have more energy
- Anger mood swings have disappeared
Were these directly attributed to my iron levels? I am not sure.
My family doctor strongly recommended that my sister and children be checked out. My sister does not have hemochromatosis. My youngest son’s genetic test results came back positive for the mutated genes while my other kids have not yet been tested.
I recommend reading about a recent study in the UK that uncovered a higher number of cases of disease than originally thought was caused by hemochromatosis. The article can be found on the Canadian Hemochromatosis Society’s website, toomuchiron.ca, where you can find further good reads. This is a hidden disease which is so common, yet many people have not even heard of it. I hope my story helps prevent any disease in your future that would have been caused by undetected hemochromatosis.