Diagnosed at age...?

40

Started to feel symptoms at age...?

39

What were your symptoms?

• Pain in joints like hips or knees
• Abdominal pain
• Weight gain
• Dizziness
• Muscle weakness
• Brain fog
• Memory problems
• Skin discoloration
• Anxiety
• Depression
• Low sex drive
• Diarrhea
• Bloat
• Fatigue / feeling tired
• Insomnia
• Over-sleeping

Explain your symptoms.

The symptoms were constant. I was exhausted and depressed and in pain that I couldn't really explain to anyone.

It was so hard to stay motivated to work hard, raise my son and just keep up with life. I would see other people and just wonder how the hell they did it. How did they have the energy, or more importantly, why couldn't I do it!

How did you discover you had hereditary hemochromatosis?

My doctor thought I might have a thyroid issue and ran a panel. My iron level came back very high and so she ran more tests. Finally I had the genetic test and am homozygous C282Y.

Initial iron panel results:

• Serum Iron: 192
• Transferrin Saturation: 70%

Treatment plan from your doctor?

Limited alcohol and advised switch to a vegetarian diet. I am still waiting on liver enzyme tests and then we will talk about phlebotomies.

How did people in your life react to your diagnosis?

Everyone thought it was so odd. No one except a few MD friends had ever heard of it. My family was tested and they are all carriers but I am the only one with two copies.

Tips for others with hemochromatosis?

Research as much as you can and reach out to people.