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Hereditary Hemochromatosis, what you need to know

There is a very common yet rarely diagnosed genetic condition called Hemochromatosis. It can be serious yet it is very treatable. Here is what you need to know:

(Disclaimer: I am no doctor, only sharing my experience. I hope this helps to save a life!)

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I always thought my healthy habits would protect me from any crazy diagnosis. I thought growing my own food, ordering fancy vitamins, and drinking lots of water meant I was bullet proof. I guess I also thought I was in control.

Hemochromatosis, it’s a genetic blood disorder where your blood holds onto more iron than it should. And I have it. There is nothing you can do to prevent it and nothing you can do to cause it. It is inherited.

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Suspecting I had a food allergy, my doctor decided to do some blood work. Thankfully he also did a complete iron panel (not regularly checked). My iron levels came back WAY above the normal range. There are very few reasons anyone’s iron would be elevated, and the most common is hemochromatosis.

When my doctor asked me if I had ever been tested for it, I just said, “Hemo chroma wha????”

He ordered another blood test where we discovered I do indeed cary one gene copy of this genetic condition.

I (naturally) read EVERYTHING i could possibly find online, bought a book about it, and annoyed my doctor until I finally got some answers.

I figured having too much iron was a good thing. But I was wrong. When it comes to iron it is all about balance. When there is not enough you become anemic and your blood doesn’t have enough iron to perform properly. When you have too much your vital organs (mainly your liver and heart) are essentially poisoned and it can eventually be fatal.

The good news is it is super treatable! Just by donating blood!

But for me it wasn’t that easy. My Ferritin (bound iron) was on the low side of normal and my iron saturation was high. So giving blood would just aggravate the issue. The good news is my fasting blood work was MUCH better than my non fasting which is a clearer picture of my levels. I also only have one gene copy making the possibility of me getting “iron overload” less likely. For now the doctor just wants to monitor my diet and have regular lab work to watch my iron levels. Typically this condition is not discovered until patients are much older, if at all. I am fortunate to be aware of this in my young 30’s so we can be proactive.


How does this apply to you?

The main thing I have found is how common this is yet how RARELY it is diagnosed. In fact 1 in 4 people of Caucasian decent has at least one gene copy. Yet it is often labeled heart problems, arthritis, depression even diabetes.

The symptoms are very vague (another reason it is so commonly misdiagnosed) but include: feeling tired, achy joints, constipation, bronzing or “melasma” of the skin, and feeling depressed. Lots more info here.

Unless you are anemic be cautious of taking any multi-vitamins with iron. Women’s multi vitamins, especially pre-natal are LOADED with iron. Most women do need more iron than men but eating a healthy diet is typically an adequate supply.

Next time you have a check up ask for a COMPLETE iron panel. Not just your hemoglobin but your iron saturation, total iron count, ferritin etc.

Statistics show that people who donate blood on a regular basis (men in particular because they don’t have a monthly cycle) are 25% less likely to die of a heart attack. I am willing to bet this is the reason why!!

If you do not discover you have hemochromatosis and it goes untreated there is a high risk of liver disease, heart disease, diabetes, and others.

If you find out you have it early enough and it is properly treated, those who have hemochromatosis will live a long and healthy life.

Despite my original FREAK over the situation it is really a very good outlook.

My goal in this post is to educate as many people as I can so they can help prevent serious results from such a treatable condition! Tell your friends and get your iron checked, it could save your life!