Will I Run Again?
Running with a Rare Disease
When Too Much Iron is a Bad Thing
My last real run was Thanksgiving Day. It was a 5K competitive race. Conditions were great — cool, low humidity, and a flat course. I did relatively well — a 7:27 pace and 11th in my age group. However, I felt like I was being held back, like I couldn’t quite shift into the next gear. Post-race, I quickly deteriorated. Initially, I felt good and energetic. Once home, however, I felt sore, disoriented and short of breath. I got into and stayed in bed for two hours.
Unfortunately, this wasn’t new. Since August 2020, I had experienced a range of unusual symptoms including heart palpitations, sore fingers, extreme fatigue, loss of concentration and mood swings. It was difficult to establish a pattern to or correlation with anything happening in my life. I would have a couple weeks feeling normal and then, inexplicably, be laid out in bed for several days, lacking energy and interest to move. On the worst days, the house could have been burning and I wouldn’t have cared.
My daily runs during this period were frustrating. I would often hit a wall by the fourth or fifth mile, either slowing down or outright stopping. The start would feel normal — steady breathing, good energy, mentally focused. However, my breathing would eventually turn labored, like insufficient oxygen was getting to my muscles. Then I would lose interest. Some days, I would walk more than I had run. In retrospect, the fact that I ran as well as I did Thanksgiving Day is pretty remarkable considering what was happening in my body.
“Iron Man”?
The heart palpitations spurred me to talk to my primary care physician (PCP). In late August, I had experienced several unusual instances of my heart racing while doing low key runs. My PCP referred me to the cardiologist who ran several tests — blood work, an echocardiograph and a heart monitor. All were fine. Or, at the very least, the problem wasn’t with my heart. From there it was speculated that my symptoms could be related to anything from using Afrin nasal spray, hypothyroidism to a previous, undiagnosed COVID-19 infection. Slowly, but surely, all were ruled out. And depression? Probably not — I already took an anti-depressant and a stimulant for ADHD. Since August, it seemed like both medications simply stopped working, like a switch had been flipped.
Fortunately, I have an outstanding PCP. She kept listening to me and progressively moving through the lab work. My unusual condition post-Thanksgiving Day race — sore abdomen and extreme fatigue — spurred her to order additional tests. After nine vials of blood were drawn in early December, we had a lead — high ferritin. Ferritin is not a typical test ordered by physicians; I had never heard of it before. It is an indirect measure of how much iron is stored in the body, not just in one’s circulating blood. My ferritin was roughly eight times what was expected for a normal, healthy adult male. She retested me two weeks later — still high. By the end of December, I was seeing a hematologist.
A diagnosis finally came in mid-January — hemochromatosis, a hereditary iron overload disorder. Without getting too much in the weeds, iron absorption is not properly regulated leading to excessive amounts retained in the body. It is genetic, working in the background since birth. Most people with the condition will not experience their first symptoms until their late 30s. When symptoms do show up, they are usually non-specific — fatigue, loss of concentration, joint pain — all conditions common with getting older. They are also difficult for PCPs to base a diagnosis on. Typical blood tests, like a Complete Blood Count (CBC) and Comprehensive Metabolic Panel (CMP), do not measure ferritin. For many people, especially men, they will simply try to push through the symptoms, but as iron saturates the body severe, irreversible conditions set in like liver cirrhosis and heart failure.
Additional lab tests found that my blood was saturated with iron. Not only was my body storing extra iron in my organs and joints, my blood had about four to five times more than what a healthy adult required. I will not suggest I am an expert and can properly explain the pathophysiology. In general, the extra iron my body was stashing was causing inflammation and disrupting my basic biological processes like metabolism, movement of oxygen and neurochemicals. Iron was everywhere and had nothing to do. Like an aggrieved proletariat working class, they were rioting, lighting bonfires in the streets and disrupting production.
When the treatment is as bad as the disease
Fortunately, the treatment for most cases of hemochromatosis is simple — medieval-style blood-letting. Clinically referred to as “phlebotomy,” giving blood is the most straightforward way to lower the amount of iron stored in the body. When the body loses blood, bone marrow begins to generate new red blood cells, which must be paired with iron. Over time, there is a net reduction of iron in the body and life returns to normal.
Except, not really. What I failed to appreciate when my doctor placed me on an initial plan of weekly phlebotomies was that my body would become anemic. Instead of feeling tired from too much iron, I would be too tired from too few red blood cells and hemoglobin carrying oxygen around. And the immediate lower volume of blood in my body after each phlebotomy forced my heart to beat faster in order to meet the same oxygen needs.
By my fourth phlebotomy in as many weeks, over 1.5 liters of blood had been removed. To put that in context, the average adult has about five liters of blood in their body. Most blood banks only take 1/2 liter at a time and restrict donations to every two to three months. Over the span of four weeks, I had given over 30% of my average total blood volume or a year’s worth of donations. While my body was rapidly replacing the lost volume with new plasma, it can take weeks to replace red blood cells. Each phlebotomy was making me increasingly anemic.
I was exhausted and still couldn’t pay attention to my work some days. I had to take naps in the afternoon. My few attempts at running were feeble — what was traditionally an easy two mile run felt like a marathon requiring frequent breaks. I started to despair — would I get better? Was there a light at the end of this dark, depressing tunnel? And, increasingly, would I run again?
When can I run again?
Since that fourth phlebotomy, I’ve started to have some hope. I skipped the next one, allowing my red blood cells to rebound a bit. My latest labs showed that my ferritin was now only three times the target level — safer but still elevated. Along with that decreased ferritin, my mood and concentration had started to improve. I’ve been able to work and be more productive. More importantly, I’m able to be a good, present husband and father again.
Running is on hold for the moment. Even on days I feel great, I’m not bothering with it. My red blood cell count is just too low and will remain low until I get my ferritin down to the target. I love running but I hate when it hurts. It should be fun and rewarding — I don’t want it to be a struggle and feel dangerous with my heart racing, gasping for air. On the upside, the future should be bright. This insidious disease has been with me for years, likely holding me back in work, life and running. If it is under control, maybe everything will be better — a better runner and a better me.
