Heads up! I’m NOT a doctor or nutritionist. I’m not giving you any medical advice or dietary recommendations here. Check with your doctor before you make any changes to your lifestyle, diet, or supplement regimen.

When I first got diagnosed with hereditary hemochromatosis, I'd never even heard of it before!

It seemed like such a strange and unlikely cause of all my symptoms.

My aching joints, bloated belly, sporadic bouts of dizziness, and a feeling of just being tired...all caused by IRON? 

I thought - hasn't everyone been telling me my whole life how important iron is for women? How most women are on the brink of becoming anemic?

How can too much iron even be possible?

And it felt even more unusual that I somehow inherited it from my parents, who had no symptoms. 

There's one gene that causes hereditary hemochromatosis (called the HFE gene), and a person needs to inherit a specific mutation of that gene from both their mom and dad in order to develop the disorder.

In my case, both my parents were carriers of the genetic mutation but neither actually had the disorder. They each passed the gene onto me.

If you're like me and you receive the HFE genetic mutation from both of your parents, then the gene can take effect and "turn on."

The HFE gene convinces your body to absorb too much iron from the food you eat.

If you're anything like me, you might be thinking...

What's wrong with that? Don't we all need more iron anyway?

Unfortunately, we know a lot about anemia and iron deficiency but not many of us are clued in to what happens when the scales get tipped the other way.

The big problem when you've got hereditary hemochromatosis is that your body absorbs up to 4x the amount of iron than it's supposed to - it doesn't know what to do with all the extra iron, so it deposits the iron into your organs which causes them to stop functioning.

Some of the early symptoms of hereditary hemochromatosis include...

• stomach pain
• joint pain
• weight gain/weight loss
• dizziness
• bronzing of the skin (aka looking super tan)
• mood swings
• depression
• loss of body hair
• heart flutters
• memory fog
• weakness
• fatigue

Hereditary hemochromatosis affects over 1 million Americans.

1 in 8 people of European descent is a carrier of the gene.

But the reality is that not many people know much (if anything) about it.

A few months before I got diagnosed, I visited a doctor to discuss my bizarre health issues - sporadic stomachaches that came and went without any rhyme or reason, a bloated belly and weight gain around my middle, occasional moments of dizziness, random times when I had weak and shaky hands, a left hip that ached like I was an old lady, and needing more sleep (and being more tired!) than anyone else I knew. 

At that point, I'd Web MD'd the sh** out of my symptoms and thought I could have anything from multiple sclerosis to lupus to ovarian cysts to mold poisoning (hemochromatosis did not come up once in my frantic internet searching). 

I have to admit, I felt pretty self-conscious as I explained my symptoms to the doctor because I realized that saying "I'm fatigued, bloated, and I gained a little weight...and I sometimes feel dizzy, but just sometimes....and my hip and hands feel a bit achey on some days...but it's sporadic" probably wouldn't get me very far.

In all honesty, A LOT of people would probably say they have those symptoms.

That’s one reason why it took me forever to finally admit to myself that there was something actually wrong with me.

But my symptoms, however innocent they seemed, had persisted for too long. Even though I'd convinced myself that some of my symptoms were “no big deal,” my moments of dizziness and weakness were too scary to ignore them any longer.

I knew there was a problem and I had to figure it out.

When I went to the doctor, I was ready for anything. I braced myself for tests and procedures that would ultimately lead to some bad news about my health. But oddly enough, that doctor's appointment resulted in... nothing.

Maybe it was my doctor, maybe it was my own self-consciousness, or perhaps a combination of both, but she quickly brushed off my concerns, asking me about anxiety and telling me to get enough sleep, saying we could do a generic blood panel if I really wanted to, leaving me embarrassed and worried that I was making something out of nothing. 

After my meeting with that doctor, a big part of me feared I was becoming a hypochondriac who was too sensitive to everyday aches and pains.

I second guessed myself and thought, "maybe it's all in my head."

But I had to stamp out that thought with "I AM NOT CRAZY."

And I forced myself to go get checked out again (with a different doctor).

I took a different approach this time and I saw a naturopathic doctor. I didn't know what to expect and was a little scared that she'd be too woo-woo, telling me to take Chinese herbs or meditate, and while I think that stuff is pretty cool, I knew I was way beyond that...I needed a REAL answer. 

Fortunately for me, after talking for almost an hour, this new doctor and I agreed to a thorough blood panel that would test everything from vitamin and mineral deficiencies to antibodies in my blood to hormone levels to the size of my red blood cells. 

A few weeks later my results came in, and I heard the words I had been both dreading and dying to hear: "I have answers for you."

And that's when I got my hemochromatosis diagnosis. My doctor said that after she saw the high numbers from my iron tests, she asked the lab to do one extra test - the genetic test for hereditary hemochromatosis, which came back positive. I had two copies of the C282Y mutation, the most common mutation on the HFE gene that leads to iron overload.

And that was the end to my mystery.

I later learned how lucky I was to get diagnosed at a young age. 

Often misdiagnosed or undiagnosed until the damage is irreversible (resulting in diabetes, liver cancer, heart failure, and even death), the beginning symptoms of hereditary hemochromatosis are easily confused with symptoms of other health issues.

In fact, hemochromatosis is MOST commonly diagnosed at autopsy...after the person has died from complications of a disorder they never even knew they had.

I’m fortunate to have found out early enough that I can prevent damage to my organs.

Since my diagnosis, I've had to make some changes...

I started getting phlebotomies (fancy word for "bloodletting") on a regular basis.

Losing blood is the only real treatment for hemochromatosis because it forces the body to create fresh new blood that isn't tainted by excess iron.

I also cut out unnecessary iron from my diet.

Goodbye, cast iron pans. So long, steak sliders.

It took time (as well as an MRI, an ultrasound of all my abdominal organs, an endoscopy, and multiple visits with a nutritionist) for me to actually start feeling better.

That's because there were a few things keeping my from just jumping back into health...

One problem was that my iron saturation levels were "stuck" on being high even though my iron storage levels went down to normal. My iron saturation levels started off at 82%, and even after several months I still couldn't get them even close to 45%! (under 45% is normal...anything over 45% is considered too high).

High iron saturation, even with normal iron storage levels, can still cause symptoms.

I also had a few other things going on...

My joints were achey from chronic inflammation, my digestion wasn't working right, my liver enzymes were a bit off-kilter, my thyroid hormones were straggling, and my cortisol levels (that's the stress hormone) were too high, messing with my sleep.

Nothing was so far off that I needed a second diagnosis of thyroid disease or a liver biopsy or anything like that, but it was enough of a red flag to show me and my doctor that things still weren't right. 

Were these issues caused by iron? Or by the stresses of everyday life? Or a combination of both? Or some other cause? I have no idea.

Regardless, I ended up having to cope with more than just extra iron on my "healing journey." And it took time.

But the good news is...with diet changes, blood donations and some work, I eventually got there. I got to the point of feeling HEALTHY again!

My dizziness disappeared, my hands felt strong again, I lost that dang muffin top that had refused to go away, and I felt clear-headed.

And because it's a genetic disorder, everyone in my family got tested. One of my sisters found out she also has hereditary hemochromatosis. My mom sent a letter out to our extended family letting them know hemochromatosis is genetic so they should get tested if they experience any symptoms. My mom's cousin, who'd been feeling sick for years and hadn't been able to figure out what was wrong, read the letter, went to the doctor immediately, and got diagnosed with hemochromatosis too.

That's my story, and I'm curious to know yours.

If you have hemochromatosis, comment below and share, or go to my SHARE YOUR STORY page so others can learn from your experience!

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