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

56

At what age did you start feeling symptoms?

40

What were your symptoms?

• Knuckle pain in fingers
• Pain in joints like hips or knees
• Constipation
• Diarrhea
• Bloat
• Shaking / trembling

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

Knuckle and joint pain was the most frequent, much worse when barometric pressure changed and rain came. Constipation and diarrhea took turns with each other.

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

Eventually, the symptoms were such that I couldn't go back to the more physical jobs that I liked to do. That included things around the house and in the yard.

How did you discover you had iron overload / hemochromatosis?

It was just this past May [of 2020] that I found out, When the covid-19 lockdown first started in March, one of the early suggestions going around in nutritional circles was to up your intake of vitamin C and Zinc especially the liposomal vitamin C, highly absorbable. So I did that starting in the beginning of April...by the mid to end of April I had become increasingly jaundiced and exhausted all the time and I could not keep food down, so my doctor ran tests and found it.

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?

I remember for sure my ferritin levels were 4044, iron at its highest was well over 2,000, I don't recall at the moment other numbers. Everything was high like that, including liver and biliary numbers

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

I have two copies of the mutation, got it from both parents.

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

About all he said was to stop eating red meat, eat a lot of fruits and vegetables. That's all he I said at the beginning. Everything else I learned through researching and reading. But that was after I binge-watched Netflix for two days because I was so overwhelmed when I first started trying to look into it

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

"What is that?"

Absolutely the number one response.

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

Once I changed my diet and had anti-nausea medication and was able to keep some food down, I slowly started feeling better. My numbers came down significantly within a month. Naturally I quit taking that vitamin C and I researched every single ingredient in every single supplement and herb I was taking to determine if it was good for the liver and for hemochromatosis.

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

It's okay to be overwhelmed, it's okay to feel alone but just know you are not alone. And it's okay at the beginning to feel like you've turned into a freaking chemist trying to figure out what to eat when and with what.

Anything else you want to say?

It's not easy making big diet changes, don't expect to be perfect at it. But do it! It makes a huge difference! That was the only change I made when my numbers came down, by the time my first phlebotomy happened, my numbers were almost down to normal

Bio:

I live in Dallas Texas, I have four daughters and two grandchildren and a son-in-law, both of my parents are still alive and both of them have quite a bit of medical stuff going on and I wonder how much of it was due to iron.

I was Triple National gold medalist in competitive swimming and I'm looking forward to feeling like being much more active very soon.