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Hemochromatosis - Patient Experience

Updated: Jan 26

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I have Hemochromatosis.

What was funny was I had no idea I had it. I decided to get the Ancestry Health DNA tests. Here is a link to get one of your own. Getting this test was a great choice for me.

Surprise! Luckily, I wasn't showing many signs, but it did turn out that I had some. Finding out this information, actually helped me to better direct my treatment plan for other issues, as it made us (my doctors and I) question and re-evaluate my diagnosis for other issues.

Hereditary Hemochromatosis Diagnosis from Ancestry Health
Hereditary Hemochromatosis Diagnosis from Ancestry Health

The results showed that I had a genetic disposition. I asked my doctor what it meant. He had me get my iron and ferritin levels checked. Sure enough, mine was a little high, but not bad. Luckily, a streak of luck, I caught it early.

As I had been complaining of achy joints, abdominal pain, feeling tired, and having lost some weight, my doctor checked for multiple issues, as those symptoms also are similar to so many others.

Symptoms of having too much ferritin and iron (hemochromatosis, or iron overload) include:

  • Painful joints.

  • Heart issues.

  • Unexplained weight loss.

  • Abdominal pain.

  • Loss of body hair.

  • Lack of sex drive.

  • Fatigue or loss of energy.

According to the Cleveland Clinc's website on May 17, 2022

Here is a test you could do from the safety of your own home.

It's always better to get a doctor involved early in this, but there are times it's easier.

I was then sent to a hematologist who ran some additional tests and made the decision to begin blood draws. As I have other medical issues, which do not allow me to donate blood, and I didn't want to take yet another pill... I agreed to the doctors suggestion of blood draws.

Blood draws are yet another story for another time. Research shows that regular blood letting for some people can actually improve the immune system and kick start it back up. More on that in another post.

So that is the story of my journey to find out I had hemochromatosis. Since then, I have changed some of my eating habits.

I found that if I want to eat red meat, I need to:

  • Eat a tums, some calcium, or drink some milk right before. The calcium binds directly with the iron and ferritin in the stomach and it doesn't get digested.

  • I should avoid drinking alcohol or acidic drinks at the same time I eat red meat. The alcohol or acid will break down the iron and speed it into the blood stream.

I have several other things to factor in also due to some off my other medical issues, but this that is also another story.


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