Diagnosed at age...

40

Started feeling symptoms at age...

34

What were your symptoms?

• Back & neck pain
• Skin rashes that no doctor could figure out the cause of
• High blood pressure
• Weight gain
• Shortness of breath / difficulty breathing
• Brain fog
• Memory problems
• Anxiety
• Depression
• Heart flutters / abnormal heart rhythm
• Low sex drive
• Loss of menstrual cycle / period
• Constipation
• Diarrhea
• Bloat
• Hair loss
• Fatigue / feeling tired
• Over-sleeping
• Abnormal liver enzyme levels

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

Daily. The fatigue, brain fog, back & neck pain, and bloating/stomach issues were the worst. Depression and anxiety were also constant but have improved now that I'm in maintenance. Cymbalta really helped the joint pain and anxiety/depression.

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

Yes, I was really tired all the time and had a hard time getting over illnesses like upper respiratory infections. I frequently had anxiety and depression. Bloating was a constant issue. I started to have brain fog and the tiredness made work difficult.

How did you discover you had iron overload / hemochromatosis?

My family doctor ran bloodwork and noticed that my Ferritin and Iron Saturation were very high. I was tested for the gene and it came back positive.

Initial iron panel results:

• Ferritin- over 1,000
• Iron- 195
• Saturation- 96.5

Genetic test results:

I have two copies of the c282Y mutation.

What is the treatment plan your doctor prescribed?

Weekly phlebotomies which eventually went to every other week until I got to maintenance. So far I have not had to have a phlebotomy in 5 months. He said to stay away from raw seafood, red meat, alcohol, and supplements with iron and vitamin C.

How did your family, friends, and peers react to your diagnosis?

They had no idea what it was. It was very difficult because my Ferritin was so high that I gave up alcohol for several months so socially it was isolating.

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

My symptoms have eased since being in maintenance. I still get a little tired but no longer feel the need to over-sleep. I still have some back pain, heart flutters, bloating, stomach issues, and high blood pressure. I'm on blood pressure medication now.

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

I feel that a mostly vegetarian diet is helpful. Try not to let the diagnosis control your life. My doctor was incredibly blunt with me to the point that I cried when I was diagnosed. Get support. I went to a counselor to work through my feelings.

Anything else you want to say?

The most difficult part of the diagnosis for me was a fear of the phlebotomies (I'm a pro now) and being told I could have no alcohol. Socially that was just very difficult and I always enjoyed going to wineries and breweries with friends. Admittedly, I have not been good about cutting alcohol out but I do limit red meat, meat in general, and raw seafood. The phlebotomies can make you weak and tired so I recommend not doing much the day of. Make sure to hydrate lots and eat a good meal before a phlebotomy.

Tell us some fun facts about yourself.

I'm a social worker in South Carolina. I enjoy riding my Peloton bike and exercising. I like to read and travel. I have a sweet orange tabby named Murphy.