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

63

At what age did you start feeling symptoms?

51

What were your symptoms?

• Knuckle pain in fingers
• Pain in joints
• Weight gain
• Shortness of breath / difficulty breathing
• Muscle weakness
• Skin discoloration
• Heart flutters / abnormal heart rhythm
• Loss of menstrual cycle / period
• Diarrhea
• Bloat
• Fatigue / feeling tired Insomnia
• Abnormal liver enzyme levels
• Liver problems
• Other symptoms - struggled with weight gain since menopause, despite eating an unprocessed diet and never being overweight for the first 50 years of life.

So much makes sense now. I have Swedish and northern European heritage

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

All symptoms ongoing

Shortness of breath: no matter how much exercise or healthy eating I did, was a problem as I got older (35 onwards)

How did you discover you had iron overload / hemochromatosis?

A family member was diagnosed and we were advised to have the test

Did you get a genetic test for iron overload? If yes, what were the results of the test? (for example, I've got two copies of the C282Y mutation).

One copy

When you got diagnosed, what was the treatment plan your doctor gave you? (for example, your doctor might have prescribed phlebotomies 2x per month and limited your alcohol intake). Did you make any diet or lifestyle changes?

No alcohol, no supplements (vitamins etc), vegetarian diet, walking, yoga, meditation, no caffeine (to improve poor sleep patterns)

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

They seem to have no knowledge or understanding of the condition. I am finally understanding what and why I have have struggled so badly with my health since menopause and cessation of periods. This condition has had a massive impact on my health and life.

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

I was given no advice initially really, other than monitor iron levels. I have just have blood tests with iron levels up and liver enzymes. Now researching more and making adjustments. Finally things make sense and I understand how my body works.

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

Gain as much knowledge as possible and move to an unprocessed, plant based lifestyle. I may down the track bring in fish again occasionally.

Anything else you want to say?

I am blood type A, which leans to a vegetarian diet. I wonder if there is a link between blood type and this genetic condition

Bio:

I live in southern Australia and went for post graduate study back to university 3 years ago for post-graduate study to find answers for my health and change paths ways.

I have just completed my master of Human Nutrition and Hemochromatosis was not mentioned in this very comprehensive course that was also being studied by many doctors, dentists etc.

There is still a long way to go.