At what age did you get diagnosed with iron overload / hemochromatosis?

50

At what age did you start feeling symptoms?

49

What were your symptoms?

• Pain in joints like hips or knees
• Heart flutters / abnormal heart rhythm
• Insomnia
• Liver problems

How frequent were your symptoms? Which symptoms affected you the most?

I experienced pain in joints for years, but I always thought my days as a runner was the reason. My heart fluttering started 3 months before my diagnosis.

Did your symptoms affect your daily life, such as your ability to do your job or your relationships?

The pain in my joints has always made it hard for me to do normal activities but I have always pushed through the pain. The anxiety and fear of the diagnosis has had its effect on my relationships and normal life. My diagnosis is very new so I am still working through all of the feelings that come with it.

How did you discover you had iron overload / hemochromatosis?

I was experiencing heart flutters and irregular beating and my doctor recommended doing blood work and we found elevated iron levels and T sat.

If you know your test results from when you first got diagnosed, would you be willing to share those numbers so other people can compare?

• 200 Serum Iron
• 57% T Sat
• 74 Ferritin

Did you get a genetic test for iron overload? If yes, what were the results of the test?

1 copy of C282Y

When you got diagnosed, what was the treatment plan your doctor gave you? Did you make any diet or lifestyle changes?

My doctor and I have not yet come up with a plan, however I have changed my diet significantly on my own.

How did your family, friends, and peers react when you told them you have iron overload / hemochromatosis?

My siblings and immediate family reacted with empathy. My mom, on the other hand, acted uninterested but she is willing to take a test to find out if the gene came from her.

Did you continue to experience any symptoms after your diagnosis? How do you feel today?

I continue to experience joint pain and I am scheduled for an MRI of my liver and heart so I feel very nervous about those results. We are looking to see if there will be iron deposits in those organs and that scares me very much.

Do you have any tips or advice for others struggling with iron overload / hemochromatosis?

I am very new to all of this but I would say inform yourself as much as you can.