Patient Comments: Iron Overload - Symptoms


What were the symptoms and signs with your hemochromatosis (iron overload)? Submit Your Comment

Comment from: IronMan, 55-64 Male (Patient) Published: March 16

I was diagnosed at age 46 with hemochromatosis because of abdominal pain which led to colon resection. Now I am 64 and have had both hips replaced, both big toe joints replaced, and am about to have both index finger joints replaced. Fatigue and pain are now a daily routine. The routine is typically pain so bad that I can't function. Ankles and knees are now giving me problems. I was active duty military (USN) for nearly 24 years and I did not take my iron overload condition that seriously. So either I just put it off or I did not have the opportunity to get proper and consistent phlebotomies due to being deployed. My strongest advice is to get your iron under control and keep meticulous records.

Comment from: Thuthula, 45-54 Female (Patient) Published: September 07

I'm having an eye problem and it's been three months now. I am having a lump on my lower lid of my eye. I don't know what I should use to make the chalazion disappear; it's painless but itchy.

Comment from: paul, 65-74 Male (Caregiver) Published: June 07

My husband has hemochromatosis and his legs have bright red large spots and scabs on them. They are very dry and they bleed.

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: grimslry, 45-54 Male (Patient) Published: July 11

I am the wife of someone who is type 2 diabetic he is 53 years old in stage 3 renal failure. In his last week's blood work to check A1C and cholesterol it was noticed ferritin was 1385. There is no diagnosis yet, and has several appointments in the next few weeks. However he was adopted so we don't know family history. When I looked up, it led me to hemochromatosis so it is a waiting game at this point.

Comment from: mayo, 75 or over Male (Patient) Published: June 19

I have hemochromatosis and my ferritin was up to 1200 when your organs should shut down! I found out my vitamin D was 30 instead of above 50 (my doctor had the same D level once I mentioned it to him). My hemoglobin was at 17.5 and should be at 13, so I started dumping blood at the bank. I also had a faulty test on my bilirubin about which I argued with my doctor because there were no signs of jaundice or glucose in my urine. I even had a biopsy which said it was stage 2.

Comment from: Robert M., 65-74 Male (Patient) Published: March 14

My wife and I have found that a half teaspoon of ground turmeric works great on joint pain. It's only USD 4.00 at supermarket so a cheap fix if it works for you. I have high iron (hemochromatosis), I think the thick blood from high iron caused my heart attack.

Comment from: mel, 55-64 Female (Patient) Published: October 13

A week ago the calf muscles on my right leg collapsed while walking home. I sat on a bench nearby because I could not step on the leg. I rested for about 5 minutes then limped badly to my home about 300 meters away. I still limp slightly but am able to walk slowly. I notice that the calf muscles are hard and I use Bengay at times, and at times ice. But the muscles remain stiff and hard, more than the muscles on my left calf.

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.

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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: 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: amg, 45-54 Male (Caregiver) Published: May 03

My son's iron is 1900, has been 3900. We are having to wait for the gastroenterologist to write the order to be bled. I wonder if there can be a connection between high iron (hemochromatosis) and migraines. My son came home today almost blind with a migraine (not the first one). We have just been concerned with the liver.

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.

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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: 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?

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.

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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.

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

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

Comment from: binky, 45-54 Female (Patient) Published: April 27

After having a hysterectomy about a year and a half ago, my doctor noticed an increase in my iron when doing routine blood work. She sent me to a hematologist, I had ultrasound of my abdomen and other tests to exclude hepatitis, and received my diagnosis last Friday. I had noticed that I have been more tired than usual, and my knees are always achy.

Comment from: kim, 55-64 Male (Patient) Published: February 24

I was diagnosed with haemachromatosis in 1994 after my twin brother developed chest and abdominal pain which could not be attributed to cardiac or gastroenterological conditions. He was tested and came back positive. I didn't have symptoms as severe as him as I've been a blood donor since the age of 17 so the regular venesections have lowered my blood levels, but even with this I have the typical skin bronzing and joint pains in my hands and feet, in fact I have now developed osteoarthritis in the joints of my feet (all this at age 55) which is causing mobility problems. My parents were carriers and strangely enough only my twin brother and I have the full symptoms, my other brothers and sisters are carriers.

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.

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