Patient Comments: Iron Overload - Symptoms

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

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.

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: 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?

Comment from: Quilter, 65-74 Female (Patient) Published: March 11

When I was diagnosed in 2003 my ferritin level was 3200. I had chronic fatigue, constipation, skin bronzing particularly on my ankles and feet. My doctor ordered a liver biopsy that revealed fatty iron deposits but no cirrhosis.

Comment from: baldy, 55-64 Female (Patient) Published: March 11

Avid runner and cyclist all my life.Started to get atypical joint pain in hands & feet,so stopped running.Overwhelming fatigue soon forced me to stop the cycling and spin classes.My hair fell out and & I gained >40 lbs.!This all took place over 2 years.Had not seen a Dr. in years since my GP. had retired so went 2 a walk-in & chose 1.Routine blood work showed iron levels through the roof.

Comment from: kat, 55-64 Female (Patient) Published: February 15

I am a 55 year old female that was diagnosed 2 years ago with hemochromatosis. I have been sick for about 15 years and no one could figure out was wrong. I would have severe stomach pain, nausea, diarrhea and pass out. The onset from the beginning to the end might have lasted 2 to 3 minutes. After finally getting a new doctor that said something had to be done and sent me to a specialist was I diagnosed after a lot of blood work. I started going and getting rid of a pint of blood every week for a month then went to monthly and now I am every other month. I have a lot of fatigue, always pain in my side, pain in my legs and arms. Hoping that my children will get checked as to I have a 29 yr old son that has had a heart attack and not has stints, turrets and a rare form of MD. I am almost convinced that he has it to.



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