It’s coming up on 2 years since I was diagnosed with Hereditary Hemochromatosis.
“HH”, a.k.a. “The Celtic Curse” since it is most prevalent in people of Irish/Scottish/Celtic descent, is an inherited condition where your body has too much of the “ferritin” protein that stores too much iron in your body, leading to iron overload. If left undiagnosed or untreated, the iron begins to accumulate in your vital body organs such as your liver, kidneys, and heart, slowly maing them deteriorate and leading to many other, potentially life-threatening health problems.
My case is somewhat unremarkable as there was no major health crises in my life that lead to a big “eureka!” moment when it was finally caught. It was basically a case of being nagged by family to get in the habit of regular check-ups since I had always stayed away from doctors unless absolutely necessary, and I was getting to the age where shit starts getting real, so to speak, and my little aches and pains were slowly increasing. They began with blood tests that showed elevated liver enzymes, which led to a liver ultrasound, which in turn led to a diagnosis of Non-Alcoholic Fatty Liver Disease (NAFLD), a common ailment with our garbage diets these days. But my PCP wasn’t satisfied with just this result due to I guess detecting iron deposits on my liver, so they also tested my iron levels and ordered a genetic test for HH.
I can’t say that I ever had many of the symptoms that I’ve read about from the accounts of others that have the condition, especially with the ferritin levels as high as mine were initially. How high? Here is a graph from my health provider app that shows the entire history of my ferritin levels since I was first diagnosed, with the green area being the normal levels:
Oddly enough, treatment did not begin for several months after the initial ferritin level test and genetic test confirming the diagnosis. Treatment is easy enough, starting with weekly blood-letting sessions, draining a full pint from me every week for the first year or so. When my ferritin levels were steadily staying under 1000, they switched me to bi-weekly phlebotomies, especially since my hemoglobin levels weren’t recovering nicely with doing it weekly. I’m still on that schedule, and will be until my ferritin level gets to 50, and then I guess they will be switched to a “maintenance mode” and more spread out.
The main symptom I guess I can say I experienced from the elevated ferritin levels, and comparing life now with how it was when I was first diagnosed, is brain fog and energy levels. For many years, despite taking various “nootropics” or “smart drug” supplements for enhancing my memory retention and mental sharpness, it seemed like I had a very hard time picking up and learning new things and retaining the information. Contrast that with the past year and a half with how I’ve come such a long way in learning and working with new things with PowerShell and the Microsoft 365 ecosystem as part of my job, things that I’ve been into for over 5 years now, but it seems my proficiency has accelerated quite a bit in recent times. I was also suffering from a deep depression that just kept getting worse, and having a hard time dealing with and thinking clearly about various life situations that had come to pass. And as for energy levels, it was very hit or miss. I’d get spurts of ambition and get shit done, followed by not wanting to do anything at all for long periods of time. I actually went from lifting weights regularly and going for long bike rides to completely stopping all of that in 2019, but on the other hand that also corresponded to getting a major kick-in-the-nuts-of-life involving a close friend, but that’s another story… However, in the past year and a half it feels as though I’m more willing to dive in and take on new projects around the house involving things that I have no experience with and would previously consider uncertain or “scary”.
I have since found out that I have at least 2 first cousins that had also been diagnosed with HH in the past, and have successfully been treated for it, though with much lower ferritin levels than I ended up with. In my case, I had 2 copies of the gene that can lead to developing the condition, one inherited from both of my parents, which is called being “homozygous” with 2 copies of the 282Y variant of the gene. Though having only 1 copy of the gene can possibly lead to the condition, it is much more rare and less likely to develop compared to having 2 copies. We even think that we have it narrowed down to how it was so prevalent in my branch of the family, with both of my parents having the same great-grandmother, which is my great-great-grandmother. (Insert jokes about Bedford County inbreeding and such…)
Along with the weekly or bi-weekly blood-letting sessions, HH patients also tend to be told to cut out or down on major sources of iron in our diets. Mainly, avoiding alcohol, and known iron-rich foods such as red meat. In come cases they advise that you basically become a vegan. However, one frustrating aspect of HH is that there seems to be several schools of thought on this, even among doctors, in a way comparable to how Lyme Disease is looked at. There are those that say that the diet does not matter, with some even claiming to be following a carnivore diet and still seeing their ferritin levels consistently drop, and saying that the phlebotomies are the main thing that needs to be followed. One thing is for sure, however, is that inflammation indeed raises iron levels in the bloodstream, so avoiding sugary things and eating anti-inflammatory foods is a good idea no matter what one believes about the meat or non-meat diet aspect.
So anyway, just wanted to make a post about this subject since I haven’t posted about it before. Here is where I’m currently at with my ferritin levels, which are getting better:
With any luck, I’ll be in maintenance mode before the end of this year…