Diagnosed at age...

70

What were your symptoms?

• Body aches
• Daily multiple hot flashes 
• Knuckle pain in fingers
• Pain in joints like hips or knees
• Arthritis
• Weight gain
• Anxiety
• Heart flutters / abnormal heart rhythm
• Low sex drive
• Hair loss
• Insomnia

Another complication included an immune system storm following a flu shot I got 2 weeks after getting covid.

Which symptoms affected you the most?

• Daily joint and body aches
• Daily hot flashes
• Irregular heartbeat
• Insomnia
• Hair loss

How did your symptoms affect your daily life?

The non-existent sex drive has not been a challenge.

Irregular heartbeat put the brakes on sharing adult beverages with friends and family.

I thought the daily pain was fibromyalgia or something age related and pretty much despaired of ever feeling better since doctors seem to think fibromyalgia is all in your head.

It is also pretty obvious that I will continue to experience multiple blazing inferno flashes until I die, which is a definite part of the insomnia problem.

The covid immune storm was devastating and I continued coughing up blood 5 months after a bronchoscopy which found a pretty advanced case of pneumonia.

Beyond that, life is pretty good. But I do miss my big hair.

How did you discover you had iron overload / hemochromatosis?

The pulmonologist ordered many, many blood tests to try and find out why I was so sick. He saw the high ferritin score (598) and ordered a genetic test which revealed the mutant gene pair.

Genetic test results:

I have a pair of genes with c282y mutation

Treatment plan from your doctor?

Phlebotomy 1 time per week for first 4 weeks.

1st draw was a pint, but I felt sick and blood pressure got too low.

Subsequent draws were 1/2 pint, replaced with equal amount of IV fluids.

Nurse Practitioner did not feel any need to change diet or make other changes. Just blood draws until ferritin reaches 50. It was down to 324 at week 3, so progress is being made.

How did your family react when you told them you had hemochromatosis?

They reacted with looks of total incomprehension. Told my brothers about it, but they did not seem to be concerned. My husband has been with me for everything and mostly understands there is something wrong, but doesn't understand the ramifications.

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

No symptoms except the immune storm have disappeared, but I feel pretty darn good a day or two after blood draw. Today, I feel grateful to have another draw on Wednesday.

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

Do what the doctor suggests.

Research, research, research and write down questions to ask your doc.

Control the things you can, such as diet and alcohol consumption.

Take heart because you finally know the problem's name and now things will get better.

Anything else you want to say?

If you are a believer, thank God for the lessons adversity is teaching you and for giving you the strength to endure them.

Tell us about you!

I am a 70 year old retired married woman who lives in small town Indiana and who worked in printing and marketing for 45 years. I worked hard and now goof off just as hard. My husband and I have been married for 45 years and enjoy 6 grandkids and 2 great grandkids (my husband, thankfully, was not childless). We were both hippies when we were younger and had plenty of adventures with good friends. Now, we can't see to drive at night, so the adventures have pretty much ground to a halt. Oh well. It was fun while it lasted!