Hemochromatosis Has No Borders

Posted February 8th, 2014 by webadmin

twitter-iconCory King of York, Pennsylvania, answered our Twitter call for stories about living with hemochromatosis. Whether a person is living north or south of the 49th parallel, or anywhere else in the world, hemochromatosis can be silently and dangerously manifesting in his or her body, as it was in Cory’s, despite living a seemingly healthy life. Become familiar with the risk factors, and contact CHS if you have questions.

Here is Cory’s story:

I am a middle school special education teacher, and a part-time college wrestling coach. I work out daily, and depending on the time of the year, sometimes 2 or more times a day.

In November of 2012 my wife and I had decided to switch life insurance carriers. Previously in 2008/2009 we signed up for life insurance. In that initial test I failed my liver function test, but when retested at my doctor, my numbers passed and my wife and I attributed the initial high numbers due to drinking energy drinks the day of the test.

Fast forward to the 2012 test, I was no longer drinking energy drinks. Once again I failed my test and was referred to my family doctor. They retested my blood three weeks later and this time my liver function numbers were lower, but still too high for an acceptable range. We decided to wait and retest again in 6 weeks time. My numbers were higher than the first time. I was then referred to a gastroenterologist.

From the beginning of November to when I started my treatments I was experiencing some characteristics of HHC, although unknowingly. I get up daily at 5am to go to my school and run 2 miles and lift weights. In the afternoon, I practice with our wrestling team. However, in both cases of working out, 10 minutes in, I would get an overwhelming feeling like I was about throw up uncontrollably and my heart would race. Continuing through the duration of the workout would be difficult to accomplish, but growing up a wrestler, I was stubborn, and kept telling myself to push through it. In wrestling we are always taught that our minds will quit before our bodies ever do. I took this situation as no different, and once the situation died down, I would continue my work until I was done. During this time though I noticed that once I completed a workout, I was tired beyond belief. Teaching became a struggle, and functioning at home at night after practice with my 2 year old daughter while my wife was at work was an insurmountable obstacle. On the weekends I began taking multiple naps throughout the day, and no matter how much I slept, I would look tired and feel worse. My wife and I initially thought I was experiencing low testosterone and was tested, which I did not have. We at one point felt this was the process of aging.

Thankfully, failing consecutive liver function tests pointed me in the right direction. My new doctor ran a serum ferritin test and told me that a normal range for this test would be between 50-150 ng/ml. My test number came back at 1692 ng/ml, which he calmly said was a bit on the high side, but provided no further comments. I began my therapeutic phlebotomies every two weeks in February of 2013 and by June I was able to drop down to once a month, a schedule which I am currently keeping as my ferritin level has come down to 400 ng/ml.

During the same time I was being tested for HHC, I was also experiencing heart palpitations and chest pain throughout the day. I was sent to see a heart doctor, and he admitted it was uncommon to see a healthy 30 year old male in his office with heart concerns. He attributed my symptoms to the recent diagnosis of HHC, but ran his own testing to rule out other factors or damage due to HHC. All tests fortunately came back negative, but he felt that if I went on undiagnosed with HHC any further, and the chest pains and palpitations were to continue, I would be at a severe risk of having a heart attack or possible stroke in the forthcoming months, and that I should consider myself lucky that my wife decided to switch our life insurance carrier. My doctor suggested that the consequences of not knowing what I had would more than likely to manifest in a severe way in the near future.

Now, I feel like I’m 20 again and still competing in college. I can make it through a full workout with having to stop, and multiple ones a day without being at total exhaustion for the remainder of the day. I also cannot recall the last time I’ve felt the need to take a nap since I began my treatments. I still want to nap, but no longer do I need to!

Overall, knowing my body was going through some physical changes for a few years, to some serious health concerns, only to be diagnosed by a chance life insurance switch, I feel thrilled to be where I’m at today, knowing what could have been otherwise.