Hemochromatosis is the most common genetic disease in the Western world and, if undiagnosed and left untreated, can be life-threatening. It was for me. My story of cycling with hemochromatosis.
Hemochromatosis is the most common genetic disease in the Western world. Two hundred fifty thousand people of European ancestry in the UK and a million in the US are affected. I’ll never forget the day I became one of them. The day cycling with hemochromatosis almost killed me and how it saved me.
A medical assistant led us through a maze of hallways and past the examination rooms to her boss’ office. It was a summer day in 2010, and I was a young father with a thriving PT practice—invincible. My thigh stuck to the fake leather chair, and the room smelled of the scent of a discarded lunch container I noticed in the shadow of the half-drawn shade.
You never forget the day someone tells you you’re going to die. The oncologist didn’t look my wife or me in the eye as he began to speak. “You have the worst case of hemochromatosis I have ever seen,” he stated abruptly and without a hint of inflection in his voice, “and it will kill you.”
What is Hemochromatosis?
Hemochromatosis is a hereditary disease that causes your body to absorb too much iron from the foods you eat. Your body has no natural way to rid itself of excess iron, so it gets stored in its tissues and organs.
The normal range for blood ferritin, a protein that contains iron used in blood tests to indicate your body’s iron stores, is between approximately 25 and 335 micrograms per liter. “Yours is over 1,800,” the doctor mumbled through the side of his mouth as he walked out the door.
Tests showed that the lining of my liver, among other organs, contained high levels of iron. That’s where the “you’re going to die” part came in. If left untreated, I would develop cirrhosis and other deteriorative conditions. My body was rusting away from the inside out. It wasn’t always this way.
My Cycling With Hemochromatosis Story
I was an athlete growing up, but not an endurance athlete. Soccer was my sport, and I supplemented my fitness by lifting weights-heavy ones. My body weight when I played soccer was about 50 pounds more than my current race weight, and there was little that wasn’t muscle. I bench-pressed double my weight back then and squatted considerably more.
My final game in college was the last time I touched a ball with seriousness, but I kept up with the weights. My wife was pregnant with our first child when it all changed. Conor, our son, never met his grandfather, who died suddenly of the only heart attack he ever had.
The same was true of his father, his father before him, and my mother’s dad too. If I were going to be around to see my children’s children, I would need to find a more sustainable fitness outlet. The stationary bike at the gym evolved into purchasing a used mountain bike.
Stepping Over the Top Tube of a Road Bike Changed my Life
My life changed when a colleague lent me his road bike and convinced me to join him for a ride. The sights, the sounds, the smell of the pine trees as we rode along, covering more ground than I ever dreamed possible at speeds I couldn’t comprehend on my second hand Schwinn.
The exhilaration hooked me, and I experienced the euphoria of pushing my body to places it only went during the late stages of hotly contested soccer matches. My fitness improved as I spent every spare moment flattening the learning curve.
Building a private practice and raising a family left little spare time. Ill-equipped with the knowledge of experience, I made the same mistakes that many eager athletes have. Inadequate recovery, excessive training volume, and questionable nutrition choices caused me to get run down.
My Body Was Rusting Away From the Inside Out From Cycling With Hemochromatosis
I was rarely sick but determined not to repeat my dad’s mistakes, and I found a generic doctor to check me out. Basic bloodwork showed anemia that the doctor said could be hereditary or the result of my training. She handed me a prescription for iron supplements and sent me on my way. Routine blood work did not include ferritin.
For over a decade, I poisoned my body on a doctor’s orders and believed that if it made me ride better, I would take it daily or more. The very thing indirectly rusting my life away also proved to be my guardian angel. When I awoke in an intersection looking up at a few of my cycling buddies, I knew it was time.
Cycling Saved My Life
From what they told me, we stopped for a traffic light after a tough stretch of our group ride, and I fell over unconscious. It was the wake-up call I needed and set the healthcare carousel in motion. Eventually, it landed me in the oncologist’s office and the 1,800 hemochromatosis diagnosis.
If you know what you are looking for, hemochromatosis is easy to diagnose with a simple blood test. Hereditary hemochromatosis is present at birth, but most people don’t exhibit signs or symptoms until after 40 for men and 60 for women.
Signs, Symptoms, and Treatment of Hemochromatosis
The symptoms vary due to the diversity of organs and tissue affected and include joint pain, abdominal pain, fatigue, weakness, diabetes, bronze or gray skin color, and memory fog. Untreated cases can result in heart and liver failure.
Treatment for hemochromatosis is simple too. Much of the body’s iron resides in our red blood cells, and the systematic removal of blood from the body slowly lowers systemic iron levels. Diet modification and education are essential. Simple, yes, but a relative case of the cure being worse than the disease for a driven cyclist.
Once a week, I sat in a large room of my oncologist’s office as nurses siphoned the lifeblood from my veins for two years. It started at two units, but it went to one when my hemoglobin level dipped into the low teens. Some weeks, when my levels plunged to single digits, the nurses turned me away.
I refused to leave until they took some of the life-sustaining fluid stealing my life. I felt like a wrung-out sponge, but I was the only one in the room with a smile on my face. As long as I kept riding my bike, there was light at the end of my tunnel, and each drop into the blood bag was a turn of the pedals.
Conclusion—When Faced With a Life-Changing Health Event it Sorts Your Priorities and Sharpens Your Perspective
My bag was the only one that had color, though. All of the others were clear chemotherapy treatment, and now my perspective was too. You never forget the day someone tells you you’re going to die. You also never forget the moments surrounded by others who know the odds are against them and fight with every drop they have.
The experience changed me in profound ways. I never miss the chance to tell a family member or friend to remember to get their ferritin checked. Now I never pass up an opportunity to weigh all my decisions on the quality of life scale.
Mine starts with time, then family, health, community, cycling, and way down the list are work, money, and possessions. If anyone had asked me, ‘before that day I would never forget,’ the order would have been much different, almost reversed. I’m thankful to have been given a chance never to forget what is most important to me.
The value of experiences and empathy guide me now and will be forging my path as I fulfill my cycling dream of riding across the country. I’ll be rolling out soon for The DIRT Dad Fundo Across America and if interested you will find details here.
To support Chris in his effort to raise awareness of The DIRT Dad Fund, the non-profit he created to assist members of the worldwide cycling community, check out this link to learn more.
Find out where you can pledge a donation and subscribe to The ZOMs newsletter to follow along on the journey.
Did you know?
Were you aware of the prevalence of the genetic disease hemochromatosis and the potential danger it poses? Comment below. Your fellow virtual cyclists want to know.
To subscribe to the Zommunique and receive more informative and entertaining articles like this one sent directly to your inbox, click here!
Semi-retired as owner and director of his private Orthopedic Physical Therapy practice after over 20 years, Chris is blessed with the freedom to pursue his passion for virtual cycling and writing. On a continual quest to give back to his bike for all the rewarding experiences and relationships it has provided him, he created a non-profit. Chris is committed to helping others with his bike through its work and the pages of his site.
In the summer of 2022, he rode 3,900 miles from San Francisco to New York to support the charity he founded, TheDIRTDadFund. His “Gain Cave” resides on the North Fork of Long Island, where he lives with his beautiful wife and is proud of his two independent children.
You will read him promoting his passion on the pages of Cycling Weekly, Cycling News, road.cc, Zwift Insider, Endurance.biz, and Bicycling. Chris is co-host of The Virtual Velo Podcast, too!
I was diagnosed at the end of last year. I’m having bi-weekly phlebotomy. I was a competitive cyclist for years. I still ride and still want to race, my power is down roughly 25%. I presume this is due to the loss of blood and lack of red blood cells.
Great article and one which I can relate to.
The kind words are greatly appreciated, Mr. Graham. Congratulations on your diagnosis. So many endurance athletes like us don’t get the privilege and go undiagnosed. I felt like a wrung-out sponge for the two-plus years I underwent treatment. My energy and performance were significantly compromised. It was a time of self-reflection and an opportunity to reassess my priorities. I spent the time focused on enjoying my time on the bike rather than obsessing over power numbers and performance. Both of which made me more upset. The short answer to your questions is “Yes.” Your RBC, hemoglobin, and hematocrit levels will drop with phlebotomy treatment. The symptoms will be fatigue, malaise, and limited aerobic endurance. The good news is that once the treatment successfully got my ferritin under control, I built back up, and now I’m riding better than ever. Please feel free to reach out directly if you have any other questions. My best, my friend.
So glad to hear that your riding is better than ever!! What performance supplements are you taking if any to assist in muscle recovery?
Thank you for the kind words, Ron! I’ve been feeling great on the bike and off. I don’t take supplements and rarely ever have in my life. I eat clean and fuel for health, wellness, and recovery. Of course, paying close attention to my dietary iron intake, which at this point is a lifestyle. Cheers and thanks for your comments.