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

38

At what age did you start feeling symptoms?

30

What were your symptoms?

• Knuckle pain in fingers
• Abdominal pain
• Shortness of breath / difficulty breathing
• Heart flutters / abnormal heart rhythm
• Low sex drive
• Loss of menstrual cycle / period
• Constipation
• Diarrhea
• Bloat
• Fatigue / feeling tired

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

Daily. The joint pain, heart flutters, and IBS were the most common.

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

Yes. I would have to rest because of the heart flutters, which I still have. Also, the IBS was so unpredictable that, when planning an activity, I had to know where bathrooms were located.

How did you discover you had iron overload / hemochromatosis?

My grandpa died from it and my dad was diagnosed (after years of searching for answers to his pains).

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?

My iron count was 1170 and my saturation was 76%. I had phlebotomies every week for 48 weeks. I then took a 6 week break because I was just so weak and ill. I had another 6 treatments. I now have a phlebotomy about once every 6 months.

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

Double C282Y

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

He said to change my diet, avoid processed foods that are injected with vitamin C and/or iron, & limit my alcohol.

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

They wanted to know how I "caught" it. My parents were sad. Most people had never heard of it. There really isn't much information. Most people (and doctors) think it's rare. My doctor thinks it's the #1 undiagnosed disease among people of European/Irish/British decent. He thinks, if everyone had a simple blood test, we would learn that 1 in 16 people have the HH and 1 in 6-8 are carriers.

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

Yes, I have joint pain that is like arthritis, IBS, fatigue, heart flutters, and zero sex drive.

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

Find other people with this genetic disorder for support; stay active; find a doctor that really knows about this disease; change your diet.

Anything else you want to say?

Thank you for organizing this place to share and meet others like me.

Bio:

I am a retired teacher who loves to travel with family and friends. I enjoy antiquing and going to auctions. I live with my husband in rural Missouri. I have visited all 50 states and all of the provinces of Canada.