It’s been a little slow-going around here with furniture projects, as I’ve been in and out of doctors offices for the past month. As a nurse, I can’t not mention this if it helps even one person.
It still feels like a dream, but after a 10-15 year battle, I’ve learned that I have hemochromatosis, a condition where the body doesn’t know when to stop absorbing iron. Excess iron oxidizes and damages the organs, unless you know you have it, and then it is treatable.
Hemochromatosis is most common in people of Northern European decent. Obvious symptoms don’t usually occur until it’s too late; when the skin turns bronze and the heart and liver damage are extensive. But, there are early symptoms, which include fatique, depression, joint and abdominal pain. I had every one of them for the past 10+ years, but they were vague. Feeling generally icky became my new normal, and I pushed myself harder to prove it was all in my head. I’m also a happy go-getter inside an iron-overloaded body, so that prolonged my denial and my diagnosis. But, every year my inner voice would nudge me to try a new doctor, and I was easily convinced with each one that it was highly unlikely I had it, because that’s what I wanted to hear. So, I stuck my head back in the sand until the symptoms begged me to try a new one the next year. And the next.
My symptoms were the ones they heard day in and day out. The same tests were run over and over and over. Insanity. The only possibility they could come up with was hypothyroidism and anemia. Everything was normal, especially my impressive iron level. “You’re definitely not anemic!” is what I heard when they called to give me the ‘good’ news. I now look back and wonder where these docs went to medical school. I looked healthy. Everything was normal, except for what they weren’t checking for; what I ASKED them to check, but they didn’t. Finally, I gave up.
I owe my diagnosis to my sweet friend, Karen, whom I shared all this with one evening. She urged me to try one more time. I was done trying, but she sent me texts until I made an appointment with her doc, who humored me, and ordered the tests I asked for. I cannot express how grateful I am for her. She is an angel to me.
Hemochromatosis is the most common genetic disorder, yet the most under-diagnosed. It shouldn’t be this way. I am petitioning health care providers to routinely screen for these simple lab tests that would help so many people – ferritin, total iron binding capacity, and transferrin saturation.
I hope to put this genetic condition on the map. And to encourage everyone that if your body is telling you something, there is a reason. And to keep at it until you find out what it is. I start treatment in a few days, which is to routinely take off a unit of blood. I can’t wait to be anemic.
I do not know the extent of the damage for me, since I have further testing to do, but a preliminary liver ultrasound came back abnormal. I trust the Lord with the outcome and with my life that He has perfectly planned. All I know is that I have a lot of reasons I need to get healthy and stick around…The Little Women, and of course, my Romeo, Kevin.
