Last year, I presented with iron overload symptoms and was diagnosed with hereditary hemochromatosis. Since making a YouTube video on the best diet for hemochromatosis, I have had hundreds of people share their stories of diagnosis with me.
So, I thought it would now be nice to share my journey with everyone, too. Whether you're dealing with hemochromatosis yourself or simply want to learn more, I hope my story can provide some insight and support.
This post is all about my iron overload symptoms and diagnosis.
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The Celtic Curse
Iron overload or hemochromatosis is often known as the “Celtic curse”, and this is fitting as I am indeed Irish. It's often called this as Ireland has the highest rates of hemochromatosis in the world! However, hemochromatosis can affect people of all backgrounds; it’s just more common among folks with Celtic roots.
Since being diagnosed myself, I have been living in the Caribbean, and to my surprise, I’m not the only one living here getting treatment for hemochromatosis. People from all over the world have shared their experiences with me, which has been really eye-opening.
Discovering my family’s history with Hemochromatosis
Let’s rewind to about 15-20 years ago. My dad was diagnosed with hemochromatosis when I was around 10 or 12 years old. At the time, I didn’t know much about health and disease, but I remember being told that my dad had a serious condition that would need lifelong treatment. Of course, my parents reassured me that it was totally treatable, so I didn’t need to worry. As we dug into my dad’s family history, things started to make sense. It’s likely that some of his ancestors also had hemochromatosis but were never diagnosed because, back then, people didn’t know what it was. Sadly, my grandfather, who I never met, passed away very young, and now we wonder if hemochromatosis played a role.
My dad’s journey to getting diagnosed wasn’t easy. He’d been dealing with really bad headaches and constant tiredness, and he had to go through loads of tests and doctor visits before they figured out what was wrong. But once he was diagnosed and started treatment, he felt a lot better. Usually, when someone is diagnosed with hemochromatosis, other family members get tested too, but we were all so young and didn’t have any symptoms, so we didn’t think much about it at the time.
My assumptions and misunderstandings
Fast forward a few years, and my older brother did get tested for the condition. He didn’t have hemochromatosis but was found to be a carrier. I, on the other hand, never got tested. Partly because I just didn’t take the initiative, and partly because hemochromatosis is often thought of as a “male condition,” since women tend to lose blood (and therefore iron) during menstruation, so they might not show symptoms as early.
Furthermore, two things happened that made me assume I didn’t have the condition.
First, in high school, I went to donate blood. They checked my hemoglobin levels, and I was just on the threshold of being too low to donate. I thought, “Well, if I had hemochromatosis, my iron would be high, not low,” and that was that. But I didn’t realize that hemochromatosis isn’t diagnosed by hemoglobin levels at this time.
The second event was when I was volunteering at a hospital in Africa. A baby needed a large blood donation, and since I have O-negative blood (which anyone can receive), I volunteered. It was a scary experience—I almost fainted halfway through! This, along with my low hemoglobin incident, made me think I was on the low side when it came to iron. Plus, I’ve never been a big fan of red meat, and as a dietitian, I often see iron deficiency in women. So, I just had blinkers on about the possibility of having too much iron.
The diagnosis: Iron overload symptoms
Last year, I made some big life changes. I quit my job, moved across the Atlantic to an island in the Caribbean, started a new job, and moved in with my boyfriend (now fiancé) for the first time. With all these changes, I was feeling super tired all the time, but I just assumed it was due to stress and adjusting to my new life. I also noticed that the food here in Bermuda was different from what I was used to back in Ireland, and I wasn’t sure I was getting a balanced diet. So, I started taking a multivitamin, which had 10 mg of iron in it, thinking it would help.
A few months later, I had a general medical check-up, where they did a lot of blood tests. I work at the hospital where I had the tests done, so I cheekily added a few extra tests to my lab form out of curiosity. When the results came back, I got a shock. My ferritin (which measures your stored iron) was very high, in addition to my total iron binding capacity. This led to me having a genetic test that confirmed I had hemochromatosis.
Living with Hemochromatosis: What I’ve learned
Since my diagnosis, I’ve been on a journey to manage my hemochromatosis I started treatment right away, which involves regular blood donations (called phlebotomies) to get rid of the excess iron. I also had an MRI of my thyroid and liver, which can be affected by iron overload. Thankfully, everything was okay, and my liver tests were fine. I’m really grateful that I’ve never been a big drinker because alcohol can be hard on the liver, especially when you have hemochromatosis.
Diet for Hemochromatosis
As I have previously discussed, diet for hemochromatosis does not need to be complicated. You do not need to make big changes to your diet when you get diagnosed.
I only made a handful of minor changes:
- I immediately stopped taking the multivitamin with iron.
- I don't eat excessive amounts of red meat in general as it's not my favorite so i didn't make any cutbacks here. If I have a craving for something with red meat or another food high in iron, I will usually allow myself to eat it as it's not a regular occurrence.
- I intentionally put on a small bit of weight to help with the blood donations. I have a slim frame which can make the blood withdrawals particularly exhausting.
My advice to others
Even though hemochromatosis is highly treatable, it’s not something you can ignore as it is a lifelong condition. Being diagnosed myself has made me a more vigilant advocate for myself and others with the condition. I am very proactive in reminding my family and others with the condition to stay on top of their regular blood donations and doctor appointments.
It’s so important not to delay treatment, and if you have hemochromatosis, please take care of yourself. Remember, even though diet isn’t the main part of hemochromatosis treatment, keeping a healthy diet is crucial for your overall health, especially for your liver and heart.
So, that’s my story. If you have any questions about hemochromatosis or want me to make a YouTube video on specific complications, let me know in the comments or reach out to me on social media. Thanks for reading and take care!
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This post was all about my iron overload symptoms and diagnosis.
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