Patient Comments: Iron Overload - Symptoms

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

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.

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: 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: 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.

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