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

19

At what age did you start feeling symptoms?

17

What were your symptoms?

• Loss of menstrual cycle / period
• Hair loss

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

Always had period problems, but it stopped in August of my freshman year of college. It didn't return for almost a year later. A couple months before that, my hair started to fall out and get really thin. Doctors misdiagnosed me with endometriosis, PCOS, and iron-deficiency anemia until my blood work came back abnormal.

How did you discover you had iron overload / hemochromatosis?

Doctors thought I was anemic, so I got a blood test and my iron profile was abnormally high. Lots of bloodwork later, I got a diagnosis!

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?

• Iron: 226
• Iron Saturation: 64
• Transferrin: 251
• TIBC: 351
• Ferritin: 180

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

C282Y, C282Y

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

Only diagnosed a month ago -- doctor waiting until August to do another panel and reevaluate! For now, I've completely changed my diet: little meat (already had been doing this), little vitamin C, little products with flour, little sugar.

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

My immediate family was tested and my younger sister, age 15, was diagnosed as well. My parents and brother did not have the affected mutation combinations. My grandparents do not feel it should impact my lifestyle, but my mom has started cooking in a HHC-friendly way and fully supports me.

Bio:

I am a rising sophomore in college studying premedical biochemistry and classical harp music! I love Harry Styles, Mexican food, and watching America's Next Top Model. One day, I hope to be an OB/GYN and travel the world helping women in areas with inadequate female healthcare systems.