Patient Comments: Iron Overload - Symptoms

Question:What were the symptoms and signs with your hemochromatosis (iron overload)?

Comment from: Beth, 45-54 Female (Patient) Published: April 14

I was diagnosed with hemochromatosis (iron overload) 8 years ago and now in maintenance phase. I experience awful joint pains particularly at the end of the day. I'd hoped on iron depletion this would improve but it hasn't.

Comment from: Dan Smith, 45-54 Male (Patient) Published: March 06

I am 45 and just got diagnosed with hemochromatosis. I have had some stomach problems that started in my mid-twenties. My doctor could not figure it out. It was the ND (naturopathic doctor) that ordered the proper tests and found out. I was able to live with the stomach problems for a while, but over the last couple years, my joints have been getting stiffer and stiffer. It hurts to do almost anything, yet I still do get to the gym twice a week. I am hoping I can find some dietary solutions to this before the iron builds up more and I get sicker.

Comment from: Frenchie1973, 35-44 Female (Patient) Published: February 09

I was diagnosed with hemochromatosis a year ago. I am a 41 year old female. I have 2 of the three possible genes. I inherited one from each of my parents. I found out because, I went to the doctor because I had gained tons of weight and was having horrible migraines. Routine bloodwork found the iron overload. I was sent for a ferritin test. My levels are about 1500 right now. I experience extreme fatigue, joint pain, chest pain, I am starting to see skin bronzing, and I have a lot of kidney, liver and neck pain. So far testing has revealed my parents and siblings to be free of the disease. My children are still too young to be tested.

Comment from: Linda, 65-74 Female (Caregiver) Published: June 28

My husband had a heart attack in his mid-50s and was diagnosed with hemochromatosis. He simply donates blood regularly to control it. I warned his brother of his potential for having the disease, but was ignored. He died 4 years ago of a massive heart attack in his sleep. I recently found out that my daughter, in her mid-30s has the disease. It destroyed her thyroid. That means I am at least a carrier of the gene so all of my children have a 50/50 chance of having it, as do my husband's siblings. It is a deadly disease that is so easily treatable, I find it unbelievable that doctors don't routinely check for it.

Comment from: Cynthia, 65-74 Female (Patient) Published: April 22

I am a 65 year old female. I have hemochromatosis (iron overload) without the gene for 10 years. My levels were recently at 201 ng/ml. This resulted in me getting a phlebotomy of 1 pint of blood. I am so tired and exhausted. My joints hurt, my left side hurts and it's been four days since my procedure and I still feel weak. I am going to cut out most iron related foods.

Comment from: Bev, 65-74 Female (Patient) Published: October 15

I have high iron (hemochromatosis) but suffer little as my levels are around 366. The hematologist wants to do a watch and see. For a different problem, a doctor wanted me on Neurontin for pain but I looked up the medicine against his advice. I decided it might kill me. I am so glad I did not get on it. I have read so much bad!

Comment from: Marley, 55-64 Female (Patient) Published: December 05

My sister has hemochromatosis, she is 60 years and very ill with this. The DNA showed it was caused by a mutated gene. I am 57 years and have no signs of this. Her doctor said I should have my iron checked. I called my doctor and he said it is always checked in my yearly checkup. I am just wondering if they are doing the right kind of blood work for detecting hemochromatosis. A few years ago my enzymes on my liver were extremely high. I am wondering if this is a sign of something happening.

Comment from: Anne, 55-64 Female (Patient) Published: February 28

I am a 62 year old female and I have just received results for blood test which indicate: Iron - 25 umol/l TIBC at 46.6 umol/l Transferrin 54%. I have no symptoms of any illness or hemochromatosis.

Comment from: wtf, 45-54 Female (Patient) Published: February 20

With hemochromatosis I have bone pain, joint pain, neck stiffness and headaches in the sinus region. I also have bloating, fatigue and dark skin around neck area, under breast, in arm pits and genital areas. I have sensitivity to light, ammonia smell after urination, thinning hair, random sores (boil like), dizziness and lightheadedness, feeling like I could pass out. There is pressure in my skull by the sinus region and .palpitations while sitting, edema, extremely dry skin and memory loss.

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