Patient Comments: Iron Overload - Symptoms

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

Comment from: Tired wife, 35-44 Male (Caregiver) Published: February 04

My husband has recently been diagnosed with hemochromatosis after 7 years of problems starting with a serious blood clot in his arm. After that he had rheumatoid arthritis and his health declined. He was mistaken as having mental problems as the iron gave him a healthy glow and was admitted to the mental ward of a large hospital where we convinced a doctor to just do one ultrasound. They came back and said he probably had a cancer of some sort. After going through the whole round of specialist we where told to enjoy our life and go on holidays and the doctors would refer us to a specialty hospital. My husband's father was also sick and had been diagnosed with iron overload so we went back to the specialists right away where we found out that my husband was also suffering from it. Since then he has gotten pancreatitis and another blood clot. He is doing phlebotomies now. We wish that it had been found sooner before all the damage. His ferritin has been as high as 3800.

Comment from: Concerned, 55-64 Male (Patient) Published: November 15

My husband is 55 years old, had a massive near fatal heart attack three months ago. He has lost weight and sleeps around the clock, waking up only to eat and bathe. I spoke my concerns to his cardiologist who put the stents in and he assured me all was well. I however still was uneasy about my husband getting weaker so took him to our GP who did blood tests and discovered my husband has Hemochromatosis. When I read up the symptoms I realized my husband had many of the symptoms. Always go with your gut feelings, we all deserve that second chance!

Comment from: mrsdeecee, 45-54 Female (Patient) Published: October 31

I tested positive for both mutations of hemochromatosis (iron overload) about 3 years now. I did not feel well. Nobody believed me, not even my husband. I went to nine doctors and no one could read the iron overload blood work. I am female and will be 50 next week. I am moving to FL from NY and getting blood done in the morning. I think my damage is done. I am laying on the couch with stomachache, right upper quad is tender, and no energy, weight loss, and I knew three years prior and gave up! Please do not give up, I did and I think I am going to regret it. Good luck!

Comment from: Kcrevesto, 45-54 Female (Patient) Published: September 08

I've been diagnosed with hemochromatosis and a fatty liver. I'm still reeling from this. No more wine with dinner. I have to watch my iron intake. All my vitamins have been thrown away (they had iron). I'm now on a diet, as I need to reduce my weight by 50 pounds because of my liver. Doing some research, my mom's family does have hemochromatosis (last diagnosed in a family member in the 1940s) but my dad's family hasn't had anyone diagnosed that anyone can remember. This is almost surreal! I am just thankful that I have a sharp new doctor that caught this, or I could have died in within the next decade.

Comment from: suouelle, 25-34 Female (Patient) Published: November 06

I had pain in my right side of my stomach (liver), stomach pain (severe), was diagnosed with IBS but learned it's related to HH. Pain in joints, mood swings, brain fog, fatigue, numbness and poor circulation in lower limbs sometimes. Heart palpitations and swelling on occasion in hands and feet.

Comment from: Linda R, 55-64 Female (Patient) Published: August 24

I am a now 56 year old female, diagnosed at age 42 as having homozygous hemochromatosis. After my diagnosis, my father and sister tested positive, and are being treated. My uncles, aunts and cousins have been told about it and encouraged to be checked. I am concerned about my college aged son and daughter, who have not been tested yet. How will it affect their insurability in the future if they are diagnosed? Their father is middle eastern, and not likely to be a carrier. I think therefore my son is at more risk if it is carried on the x chromosome, than my daughter.

Comment from: retire 2013, 55-64 Female (Patient) Published: August 11

I just went to donate blood as I usually do and ended up with 17.5 Hemoglobin which is unacceptable for donating. They suggest that I give my doctor a call for a routine exam. Last donated blood in March 2011, moved to a new house with well water. Wondering if the well water is the difference as up to a week ago we were cooking and making coffee and tea with it. I guess I'll make a doctor's appointment.

Comment from: Judy, 45-54 Female (Patient) Published: May 23

Beacuase of hemocrhomatosis I experience fatigue and darker almost orange skin colour.



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