Patient Comments: Iron Overload - Symptoms

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

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.

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: Wade, 25-34 Male (Patient) Published: September 10

I am a male, 33 years old. Iron Ferritin is 900, max was supposed to be like 400 or whatever. Calcium 10.1 to 10.5. Glucose is 77 to 90 when fasting. I'm on blood pressure medications. Pins and needles sensation started in 2002. For years I thought it was stress or something, afraid to describe it to anyone. In 2011 it was too bad to take and I had to describe it to doctors. I am on Neurontin 600 mg, 4 per day. Nothing else helps so far. Neurologist denies it is neurological, and claims it is psychological. Anti-anxiety and anti-depressants have no appreciable effect, so he is wrong, but will not change his diagnosis. He denies my claim of pain at all. Pain level is 7 to 9 and I have pins and needles over whole body when not medicated. Level 10 isolated when not medicated. Even with the medication, pain spikes as high as 7 to 9 still happen. My BMI is 30, I lost 15 pounds but pain symptoms have actually gotten worse. Primary/internal medicine doctor says it is not diabetes, but does not know the real cause. His diagnosis is idiopathic neuropathy and fibromyalgia. There has been no further treatment or testing plans presented to me, besides diet, but I already eat most of the things on their suggestions, and I eat less than 2600 calories per day anyway. At the rate the pain is increasing, I will exceed the maximum allowed dosage of Neurontin in about another 6 months to a year. Demerol and oxycodone do not even take the edge off the pain when I'm not taking Neurontin. I had a unique strain of bacterial meningitis when I was an infant, but had no symptoms of it from then until now, unless this is something developed from that. Doctors do not think it is related.

Comment from: Joyce, 65-74 Male (Caregiver) Published: March 20

I had no physical signs, but high blood tests of 75% and some kidney studies abnormalities, until I had hydration more with water and less with soda drinking.

Comment from: peugeot, 35-44 Male (Patient) Published: May 03

I am a 42-year-old male, and I was admitted to the hospital with pneumonia. However, I wasn't recovering because my immune system was so depleted. Blood tests revealed a high iron count (hemochromatosis) and high copper levels. I had pain in my joints, in particular my knees and feet, pain in my liver, and pain in the right side of by abdomen all the way through to my back and even my testicles. I had absolutely no energy. Today, my consultant has told me I need another gene test to determine whether I have Wilson disease as well.

Comment from: Raymond Bullock 60, 55-64 Male (Patient) Published: July 07

I am a 60 year old man. I have just had blood tests that resulted in a reading of 47 for iron saturation. Reading all about it online, it does concern me that I seem to have hemochromatosis symptoms mentioned. The only one I do not seem to have is darkening of the skin. I understand my situation but would love to know a low iron full diet; foods to eat and not to eat.

Comment from: C677T_High Iron, 45-54 Female (Patient) Published: March 11

I am a 47 year old female who also has Addison's disease. I've attributed most of my symptoms to that until I found that my blood levels of iron in 2 tests, consecutively, were 675 and 894. I do not eat from cast iron skillets, do not eat red meat, do not eat grains and fortified foods, no multi-vitamins, etc. I do eat some chicken/eggs and lots of beans, seeds, nuts and greens. I have an appt in 4 weeks with a hematologist. Until then I wonder if the fatigue, pain in my liver and painful hands and fingers are a result of this. So far the other blood test markers - like saturation, etc, have been low. It looks like there is liver in my blood but nothing else is apparent from the blood tests to date. I do, however, look like I have a tan and I am fair, and I have the C677T mutation. These last two days I can't seem to get out of bed and I am sleeping 10-12 hours hard before I wake up, which I can't keep doing. Diarrhea, pain, etc. Does any of this sound like what you are experiencing?

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