Hemochromatosis is a word I had never heard until the winter of 2014. I finished my triathlon season with a good, but not great, race at IM Wisconsin. I spent time resting and attempting to recover, but I wasn’t bouncing back.  Weeks post-race, I still felt tired and generally ill. As a triathlete, this troubled me.

My First Approach to Hemochromatosis.

Upon my coach’s suggestion, I made a doctor’s appointment and asked to have my iron checked. It’s typical for female athletes to have low iron leading to many symptoms, including fatigue and difficulty recovering. Being a vegetarian, I was prepared to hear that I had developed anemia and needed an iron supplement. I received a call a few days after my appointment with the test results. My doctor explained that my iron numbers were extremely high, toxic even, and he wanted to do a DNA test for Hereditary Hemochromatosis.

Of course, I went home and did what we all do in this circumstance. I spent hours on the internet stressing out. Over the next two weeks, I learned everything I could about iron overload- HH while waiting for the genetic testing results. 

What is Hemochromatosis?

Hemochromatosis is a metabolic disorder causing a person to accumulate excess iron leading to organ damage. One in 300 people in the U.S. is believed to have the disease. However, it often goes undiagnosed, leading to organ complications and death. Early symptoms include fatigue, hair loss, joint pain, and loss of sex drive. Because these can be mild the complaints are often written off or attributed to stress. Symptoms become more serious when the iron accumulates and deposits in the heart leading to arrhythmia or heart failure, in the pancreas to diabetes, in the liver to cirrhosis, and in the joints to arthritis. Early detection isn’t difficult. A simple blood test checking ferritin, saturation rate, iron, uibc and tibc numbers can be excellent indicators.

Getting back to Training with Hemochromatosis.

Thankfully the treatment for HH is simple and free. After my diagnosis, I saw a Hematologist who set me up with regular phlebotomy sessions until my iron levels were in a normal and healthy range. The initial treatment phase was difficult. I went through two periods of giving a pint of blood a week for several weeks. After the treatment phase, lasting about 18 months, I entered “maintenance.” Currently, my levels are tested every three months and phlebotomy is ordered based on those numbers. Generally, training and racing are unaffected. I share this disorder with as many people as I can. Likely, my father passed away from a heart attack caused by undiagnosed HH.

Triathletes Race Ironman: Don’t Become One

If you find yourself with unexplained fatigue and reach for an iron supplement under the assumption that because you are female you need it, please call the doctor first. A straightforward blood test can prevent all the damage iron can do to your system.  As triathletes, let’s race Ironman not become one, literally.

For more information on Hemochromatosis, visit Irondisorders.org