Hemochromatosis is one of the most common inherited diseases. More people in the US are affected by this disease than cystic fibrosis, Huntington's Disease, and muscular dystrophy combined. Hemochromatosis is the forgotten disease: it lurks insidiously in our society, hidden both from patients and, unfortunately, many doctors.
There is a good treatment for this iron overload: regular withdrawal of the high-iron blood draws the toxic metal out of the tissues, preventing further damage. Many years of life-and even apparently total cures-can be achieved if the disease is caught early enough. But it is usually not.
The scariest thing...is that many doctors are not even aware they can kill their patients by prescribing too much iron!
Iron overload is an enigmatic problem that has presented a formidible challenge to the medical community for ages. "It disguises itself in different combinations of somewhat common diseases, such as diabetes and liver and heart disease, and continues to fool even today's doctors."
In a 1988 'New England Journal of Medicine' article, they reported the results of an analysis of blood samples from 11,065 presumably healthy donors. One out of every 200 people had the iron overload! A doctor of hemotology from the Mayo Clinic has said "The disease is epidemic." A more recent study suggests a ratio of 1 in 100.
A study seems to show it seems to stem from the Celtic [Irish - Scotch] origin.
We have been mislead by drug companies pushing iron supplements. We have been misled by nutritionists who all too often focused on nutritional deficiencies not nutritional excesses. And we have been misled by our own old-fashioned, fanciful ideas about iron, the magical nutrient of strength.
In 1980 a recommendation that the RDA (Recommended Daily Allowance) be lowered for Vitamin C was made. This recommendation was made since no discernable beneficial effects were measured to warrant such a dose. The effects of iron toxicity due to the Vitamin C's properties of effectively allowing the body to absorb more iron were certainly discernable though. Vitamin C, it seems, contributes to iron overload.
This recommendation was bulldozed by the pro Vitamin C lobby.
Despite enormous evidence to the contrary, the public and most nutritionists continue to view iron in far too rosy a light. Iron is thought of as the nutrient of strength, the secret ingredient in Popeye's spinach.
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Here are some common myths about iron that you may have heard:
Of the teaspoon or so of iron in the human body (about two to five grams), 60 to 75 percent of it is present in the form of hemoglobin,a vital component of our circulatory system. Despite the care that goes into the assembly of red blood cells each of them only holds up for about 120 days. Specialized scavenger cells in the liver, spleen, and bone marrow take up the old red blood cells and melt them down into iron, protein and fat. It is recycling at its best.
Your body goes to great lengths to recycle transport and store all the iron released from old, broken down red blood cells. Iron is treated almost as if it were gold. Specialized proteins have evolved to take care of these tasks. One of these proteins, ferritin, stores excess iron inside cells. These ferritin "storage bins" exist in every type of cell, guarding against iron deficiency that might arise because of bleeding or dietary inadequacy. By virtue of the efficient recycling of hemoglobin iron, our daily requirement for iron from food is really quite small. We do lose iron, about one milligram per day, in the form of sweat or urine, as well as cells that naturally slough off from the intestinal wall, hair, skin, and nails. Premenopausal women would need a little more than the normal but the equivalent of half a McDonalds hamburger or a small bowl of Kelloggs corn flakes would prevent us from being anemic.
If we do truly become iron deficient our bodies have a wonderful method of dealing with the problem. It just absorbs more of a percentage of the iron from our food to alleviate the deficiency. Most menstruating women are not deficient because their iron absorption mechanism works well. And in the case of needing more iron she can call on her "storage bins" she has in reserve.
The body after a time recognizes the iron itself as an enemy and begins to defend itself. It removes what iron it has from the blood and deposits it in the tissues effectively producing from a doctor's view as an anemic person. This person is being killed by too much iron! Invariably iron supplements will be prescribed to counteract this false anemia and the supplements will hasten an already shortened life.
What about excess iron? Can our bodies excrete it? The answer is surprisingly, no. In stark contrast to the elegant system evolved to get iron 'into' the body and to store it, we have no effective way to rid ourselves of excess iron.
As the body's iron stores increase, the absorption of iron by the intestinal walls decreases. Scientists believe this process effectively protects the body from iron overload. The evidence shows this is not so. It is only partially effective. While absorption rates do go down the metal still gets into the body and continually builds up. While iron may not be getting in the front door, it might be sneaking through the back.
The vegetarian diet in fruits, vegetables and grains has an iron which is not bound to any Trojan Horse that helps it enter the intestinal cells. It must fend for itself resulting in only 2 to 10 percent of the iron being absorbed. Phytic acid found in whole grains has an iron binding capacity which disallows the absorption of much of the iron it encounters. It effectively binds to the iron preventing it from being absorbed.
Increased iron stores have been found to be associated with the developement of primary cancer of the liver and other cancers.
We are generally unaware that this dissolved metal can act like an atomic cannonball, wreaking havoc in our tissues when it is present in excess or is simply in the wrong place at the wrong time. Few of us---and, unfortunately, few doctors know this side of iron.
These iron stores are like water in a camel's hump; we can draw on them at an time in our lives when we are short on iron. In fact, almost all of us could live for long periods of time with no iron in our diet whatsever. Premenopausal women, who lose an average of 1.6 mitlligrams of iron per day, could go without iron for roughly three to seven months before depleting their iron stores of 200-300 milligrams. Most men and postmenopausal women could go without iron for two years or more! (This assumes an average daily iron loss of one milligram and iron stores of at least 600 milligrams.)
How did this all get started? A good place to begin is at the J.B. Williams Company, the original makers of the popular multivitamin and iron supplement Geritol.
J.B. Williams, based in New York City, was one of the smaller drug companies, the kind that executives at larger firms buy and sell over lunch. Unlike other drug firms, they even owned their own ad agency. It was reported that in 1962 alone they spent $3.5 million on Geritol adveritising (equal to about $20 million today, adjusted for inflation).
They hit on a great idea! They would sell Geritol as a quick-fix remedy for fatigue, a known symptom of true iron deficiency. One group targeted by J.B. Williams was older Americans--those more likely to feel tired.
Not many people knew then--and even fewer know today--that the Geritol ad campaign was illegal. The Federal Trade Commission, which is supposed to protect consumers from fraudulent ads, began in 1959 a well-meant but largely ineffective seventeen-year battle with J.B. Williams. In 1965, the Commission finally issued a cease-and-desist order to prevent the company from airing its commercials. Unfortunately, a lot of damage had already been done. Americans had heard the misleading commercials for more than six years while the commission was slowly collecting evidence.
The response of the J.B. Williams Company was truly remarkable and gutsy. They extended their claims to even broader but more subtle themes. Now Geritol could not only make you feel better, but it would also improve your sex life and marriage.
The Federal Trade Commission later described the company's belligerence:
The commercials broadcast for Geritol since the [cease and desist order]...are no less objectionable than the [original] commercials...Five of the eight commercials...depict the transformation of a wan,lackadaisical housewife into a veritable tigress.
At the time this was happening, the consumer activist movement in the US was beginning to build strength. In the summer of 1968, Ralph Nader sent a team of investigative law students to check up on the Federal Trade Commission. 'Nader's Raiders,' understandably encountered a great deal of resistance but nevertheless managed to collect enough information to produce an important document:The Nader Report on the Federal Trade Commission. This report included a discussion of the Commission's mishandling of the Geritol case:
For thirty years Geritol has been permitted to lie blatantly to Americans, telling us that we should buy and take Geritol if we feel run-down or listless. The fact is that the number of people with these symptoms who would be helped by Geritol is almost infintesimal. Yet these symptoms are indicative of a number of other afflictions, afflictions that should lead one immediately to a physician, not to a bottle of substantially useless Geritol...
In the preface to the report, Ralph Nader described the motivations of the company and its powerful Washington law firm--which was running up a lot of 'billable hours'--stating that they 'have little to lose by these delays (even after being cited for violations of the order) and much to gain---continuing sales to people misled into believing that Geritol can make them healthier.'
Finally in 1970, the Justice Department filed a $1 million suit against J.B. Williams, charging that the company violated Federal Trade Commission orders to stop deceptive advertising.J.B. Williams responded with the standard press release: "We have every confidence that the courts will find no basis for this charge."
They were wrong. In 1973 a district court judge found that the company's "conduct amounted to gross negligence and bordered on recklessness," and she levied fines totaling, $812,000 at that time the largest ever for Federal Trade Commission violations.
John had hemochromatosis, and his story is sadly typical of many people with this disease. He was misdiagnosed for years and then struggled to keep the damage that had been done to his body from killing him. The disease and its mishandling by doctors robbed this couple of many pleasures in life. Profound fatigue followed by liver and heart disease, arthritis, impotence, and diabetes all took their toll on John and, indirectly, on Mary.
John's first symptom, experienced in his early forties, was profound fatigue. He later said that he felt "washed out and tired all the time." When he was forty-five, a black stool indicated he had internal bleeding. In trying to find out what was wrong with John, the doctors went so far as to perform a liver biopsy, in which a small piece of liver is taken and analyzed under a microscope. In John's case, unfortunately, the sample was not examined closely enough. While doctors did detect cirrhosis, the hardening of the liver with fibrous scar tissue often caused by excess alcohol, they failed to notice its true cause: huge deposits of iron. It should be pointed out that John was a very light drinker.
John's condition began to deteriorate in a pattern typical of hemochromatosis. He gradually got arthritis, but no one thought that this was related to his liver problem. Besides, he later said that "you sort of get used to arthritis."
Then, at age fifty-one, John had his first attack of angina, the sharp chest pain that signals heart disease. John was told that a coronary bypass operation might solve his heart trouble as well as his fatigue, so he submitted to the operation. But it did nothing to relieve his "washed-out" feeling. In addition, a cardiologist actually gave him iron supplements that were supposed to help him recover from the operation. In John's case, this only increased the amount of iron accumulating in his body.
Then in 1981 a hematologist diagnosed John's sister Alice as having hemochromatosis. She was experiencing symptoms similar to John's, though doctors thought that her problems might be due to drinking. Alice and her family knew that alcohol was not the problem, and through persistence and the counsel of a good specialist they eventually located the cause.
John and his wife were visiting Alice's family when she came home from her first blood-withdrawel treatment (phlebotomy) to remove the excess iron. Everyone noticed that, in addition to their similar medical histories, they both had the bronzed, tan skin that is often present in hemochromatosis victims. (The excess iron somehow boosts the production of melanin, the tanning pigment.) John also had brown spots behind the nails on his fingers and toes. Alice had been alerted by her hematologist to look for affected family members. John was a clear possibility.
When John finally got the clear proof that hemochromatosis had indeed been his problem all along,he and his wife were shocked. Though he began the rigorous phlebotomy schedule immediately, to remove the toxic iron, they knew a great deal of damage had already been done to his body. Ten years of mishandling by doctors had caused great pain and anguish, in addition to lost income and huge medical bills.
In what is believed to be the first malpractice case in the US focused on the failure to diagnose hemochromatosis, John and Mary sued a total of five doctors, two of whom failed to see the iron deposits in the liver biopsy taken in 1972. It was a bitter lawsuit; Mary says now that the whole process drove her crazy. Her husband was questioned for eight hours at one point by five aggressive lawyers. They harrassed him, accusing him of being a heavy drinker. Mary was questioned for two hours. She noted that they never bothered to ask her how it felt to see her husband sick and impotent.
Fortunately, John and Mary located an expert on hemochromatosis who outclassed the other doctors and set the record straight. They now say that "he made mincemeat out of them-they were so scared! He gave them the lesson of their lives!" At this point, the doctors could see that their case was weak, and they settled out of court with John for the substantial sum of half a million dollars.
John eventually died in 1990 at the age of sixty-three. He had stuck to the difficult treatment program; two years of weekly bleedings and then one every four to six weeks. But a great deal of damage had been done. In addition to his serious heart condition, diabetes had entered the picture. The bloodletting probably extended his life, but not as much as they could have if he had been diagnosed in 1972 instead of nine years later. (John's sister Alice, two years younger than him, was not as badly affected and continues to do fine.)
THEY HOPED THAT THE AWARD WOULD SEND A FEW SHOCK WAVES THROUGH THE MEDICAL COMMUNITY and help doctors focus on the early detection of hemochromatosis. It was their turn to be wrong..to this day doctor's 'routinely prescribe iron supplements 'willy-nilly'. They of course will argue the 'routinely' diatribe.
The stories of iron overload patients setting off metal detectors at airports are true!
The amount of iron that builds up in victims varies for many reasons, presumably due to complex factors including biological variation among individuals. One important factor that these people can control is, of course, their total iron intake. Someone who eats high-iron steaks all the time will obviously build up iron levels faster than a vegetarian. In fact, iron overload does not appear even to have been reported in countries like India, where diets are often inadequate, particularly with regard to iron.
Iron and alcohol are a dangerous combination because alcohol increases iron-absorption rates.
Listed below are the most common symptoms of hemochromatosis. If you have two or more of them, ask your doctor to perform a full-scale blood-iron test
Liver - cirrhosis,liver cancer
Heart - enlarged heart which causes retention of salt and water which backs fluid up into lungs 'congestive'
Pancreas and Diabetes - damage to insulin producing cells in the pancreas has long been thought to be an important cause of diabetes in iron overload patients
Joints - Arthritis caused by deposition of iron in the joints
Pituitary Gland and Infertility - Iron damage to the brain's anterior pituitary gland causes greatly diminished secretion of the hormones necessary for sexual function This often occurs in younger patients. Men become impotent, lose their libido, and may also experience breast enlargment and loss of body hair. Women lose their libido, have difficulty conceiving, and their periods may stop altogether
The treatment for iron overload is one that is right out of ancient medical lore: bloodletting. Removal of a pint of blood gets rid of about 200 milligrams of toxic iron. The bone marrow cells respond by speeding up the production of red blood cells and drawing more iron out of the liver and other overloaded tissues. A West German study found that iron overload victims whose livers were not cirrhotic could have a normal life span if bloodletting were instituted immediately upon diagnoses. Even if the liver was cirrhotic there was a 75 percent chance that they could survive ten years with the treatment. The study also showed improvement in heart conditions, removed liver spots, and for 50 to 70 percent improved functional capacity of the liver. Diabetic conditions and arthritis improved in some subjects.
The diagnoses of iron overload in women has been somewhat lacking because doctors thought the chance of a young woman being iron overloaded was ludicrous because of their menstruation.The blood loss does not outweigh the intake of iron and younger women sometimes miss their periods completely and iron overload can actually cause the lack of menstruation.
Preliminary reports from one of the countries leading blood-screening companies estimates a one in one hundred chance of having high iron stores.
The popularity of anemia as a diagnosis and iron supplements as a cure-all for vague complaints, particularly in women, has done untold harm to thousands who are unaware that they are iron overload victims. A survey done showed up to twenty-five per cent of iron overload victims got iron supplements from their doctor!
The Iron Overload Disease Association has estimated the incidence of iron overload of men to women at 1 to 1.4 much lower than the 10 to 1 as previously thought.
The latest malpractice suit for the misdiagnosis of iron overload came to a settlement of over one million dollars. It came from a manager of a food chain who had suffered from liver problems for years. "My kids could have read the tests."
The most popular notion is that women possess some sort of hormonal protection. A first indication something was wrong with the hormone theory came from two studies. Two different sets of women had hysterectomies. One set had just the uterus removed and kept their ovaries. The other set had their uterus and ovaries removed. On the basis of the held hormone theory you would expect those women who had their ovaries to have a lower incidence of heart disease. There was no discernable difference in heart disease rates.
A doctor posed the question? Why would the dysfunction at menopause or the removal of the uterus pose such a heart disease risk?He proposed that the protection exhibited by premenopausal women might be due to their lower bodily iron loads, which result from regular blood loss. He noted that different patterns of iron accumulation in men and women seemed to mirror trends in heart-disease mortality rates.
Researchers have wondered for some time why Adventist men exhibit 40-50 percent fewer heart disease-related deaths than non-Adventist men, far lower than would be expected on the basis of their nonsmoking status alone. It has long been known that vegetarians exhibit reduced heart-disease mortality rates, and this has usually been ascribed to reductions in cholesterol levels. However, the Adventist men, even though they abstain from eating meat, still get a lot of cholesterol and saturated fat from their high intake of dairy products.
Indeed, studies have shown that their blood-cholesterol levels are only slightly lower than those of other men, roughly 6 percent, far too small a difference to account for the dramatically lower heart disease rates.
A more likely explanation for the protection exhibited by Adventist men is that their lower intake of high-iron meat leads to lower body-iron stores.
A 1991 study showed a direct correlation between cholesterol and heart disease and iron. People were much more likely to have heart disease when their cholesterol level and iron levels were high compared when alone.
If the studies of population were all one had to go on it may be provocative but by no means conclusive.However, further support for this theory has come from more direct, biochemical investigation performed in recent years. The most important recent study showed iron is involved in damaging the heart muscle when the blood supply is temporarily cut off and then resumed. Blockage in a coronary artery can occur in a full-fledged heart attack or in transient "mini-attacks" which may or may not present physical symptoms such as angina. The heart suffers little when the supply of oxygen is diminished; the real damage is done when fresh oxygen once again flows through the arteries. The damage to the heart muscle appears to involve that dangerous combination of iron and oxygen. When blood flow is cut off, the biochemical condition within the heart cells is altered. This causes iron to be released from the large 'storage bins'. When blood flow is resumed and oxygen reenters the cells, a wild uncontrolled degradation process known as oxidation is unleashed, and the muscle fibers and cell walls suffer severe, often irreparable damage. Animal studies have shown by administering 'desferrioxamine' an iron sequestering drug greatly reduces tissue damage in induced heart attacks.
Hardening of the arteries is another of the heart and circulatory problems which seems to be directly related to iron. Studies have shown that the 'bad cholesterol' must be oxidized before the artery cells will trap it. In fact, researchers in the field cannot even get cholesterol oxidized efficiently in the test tube without adding tiny quantities of iron or other metallic substances that assist in the degradation process.
Oral contraceptives - Numerous studies have shown a correlation in the increase of heart attacks in women who use oral contraceptives. While using contraceptives a womans menstral flow is decreased to one third to one half of normal. Therefore her iron stores raise proportionately resulting in higher incidence of heart disease.
Aspirin is thought to thin the blood leading to fewer heart attacks due to the clot reducing factor. It could also be due to the fact that many people when taking aspirin lose a bit of blood which would lead to the iron stores being quite low.
Recent studies have shown cancer tumors grow at a much slower rate in mice with a low iron storage level than in mice with a normal diet. Also studies show cancer growth increases with the administration to already infected mice.
The NHANES study in 1988 showed convincingly that men with high levels or iron levels were more likely to get some forms of cancer. This was especially true for cancer of the lungs, colon, esophagus (or throat) and bladder.
The American Cancer Society is 'inadvertantly' recommending a low iron diet as a preventative measure for cancer. They recommend less meat and more fruits and vegetables because studies show lower cancer risk in those populations which eat less meat and more fiber. One reason may not be due to the fat as much as the low iron intake.
One way to look for diseases in which iron may play a part is to take a look at where researchers think oxygen free radicals are taking a part. Several medical conferences discussed over 60 or more distinct conditions.These include disorders of the bowel (for example, inflammatory bowel disease), lungs (emphysema), eyes (cataracts), and kidneys (damage from cessation of blood flow).
A second way to look for diseases that may be influenced by iron levels is to closely examine those conditions associated with inherited iron-overload disease. Arthritis, liver disease and sexual dysfunction. Flare ups in rheumatoid arthritis sufferers are caused by iron-assisted oxidation. When the flare up occurs the body reacts just as it would to a virus or bacteria and removes iron from the blood into storage sites including the affected joints compounding the problem.
Oxygen free radicals seem to be popping up all over dermatology journals and so iron should not be too far behind. Wrinkling is thought to be caused by chemical changes to the important structural proteins in the skin. The age related damage in these proteins can be produced in a test tube by the familiar combination of iron and oxygen. Dandruff is implicated in the oxygen free radical theory. The active ingredient in anti-dandruff shampoos are an anti-oxident formula.
Another unique aspect of blood donation is that your blood can be used by many people who need it! Whole blood, red cells, and other blood constituents are desperately needed for a wide range of patients undergoing surgery, treatment of injuries, or other life-saving techniques.
Many people still harbour the mistaken belief that one can get AIDS by 'donating' blood. This is impossible, as a sterilized, nonreusable needle is used for each blood donor.
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