Author: Myia Miller

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 had 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 really 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. A few days after my appt, I received a call with my test results. My doctor explained that my iron levels 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 should do in this circumstance, and I spent hours on the internet stressing out about my hemochromatosis test and what the results meant. Over the next two weeks, I learned everything I could about iron overload - HH while waiting for the genetic testing results for hereditary hemochromatosis icd 10.

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 of hemochromatosis or iron overload include fatigue, hair loss (yes, hemochromatosis causes hair loss), joint pain, and even loss of sex drive. Because this can be mild, it can be written off or attributed to stress. 

Symptoms become more serious when the iron level 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 as a simple blood test checking ferritin, saturation rate, iron, uibc and tibc numbers can be excellent indicators.

Getting back to Training with Hemochromatosis.

The treatment for hemochromatosis 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 can be difficult, depending on how much iron has been stored in the body, and I went through two periods of giving a pint of blood a week for several weeks.

After the initial treatment phase lasting about 18 months, I was able to enter “maintenance.” I have my levels tested every three months, and phlebotomy is ordered based on those numbers, and my training and racing are primarily 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.

Follow Myia's Journey at @ironmyia