.. stop drinking. Sartor did not drink. Over the next six years, Sartor saw six doctors with complaints of indigestion and difficulty in swallowing. He as given ulcer medication and vitamin supplements with iron for his fatigue.
His blood test continued to show high liver enzymes. He continued to grow weaker and eventually developed heart disease. Sartor died of congestive heart failure. When an autopsy was completed, it revealed huge iron deposits in his pancreas and heart.
The cirrhosis of his liver had been caused by large iron deposits. Sartor’s eldest son was tested and found to have the disease also. He is undergoing treatment to prevent the medical problems that his father had the last years of his life.13 In 1990, a study of 167 cardiac patients showed that their iron stores were in the hemochromatosis range (500 milligrams or higher). Only eleven of 167 patient’s doctors or 6.6 percent had considered the connection between the heart disease and hemochromatosis.14 Testing for iron levels did not appear until 1925.15 These tests were for serum iron only. They were not much help, but better than nothing. Testing for Total Iron Binding Capacity (TIBC) did not appear until 1944 and testing for ferritin did not appear until 1956.16 The normal limits were set too high which meant that people that thought they were normal were actually at an unsafe level.
If any of the symptoms are present, a doctor should run the following blood test:17 Serum Iron Total Iron Binding Capacity Percent Saturation Serum Ferritin This group of test cost from $75 to $100. The patient should request a copy of the results to make sure they are properly interpreted. The Serum Iron (SI) is divided by the Total Iron Binding Capacity (TIBC). The normal value should be 12% – 50%.18 The serum ferritin readings should be 5 to 150.
If the test results are high, treatment needs to begin immediately. If the test results are low, the doctor needs to look for the following: an internal blood loss like ulcers a cancerous tumor an infection. Cancer cells and bacteria require iron for growth. These cells remove iron from the circulation and result in low saturation. At the same time ferritin (the storage iron) may increase greatly, indicating cancer or infection.
Some doctors do not want to test for hemochromatosis. Below are some of the statements doctors will say when a patient asks to be tested:19 “You don’t have iron overload.” “You’re too young to have iron overload.” “You are a premenopausal woman, so you don’t have it.” “You are a woman and women don’t get iron overload.” “Iron overload is rare, I’m sure that you don’t have it.” “You don’t have any symptoms, so why should I test you?” “I can’t test you for this disease as your insurance doesn’t cover the tests because the tests are not medically “indicated” in your case because you do not have any overt symptoms.” “Don’t worry about iron overload, you don’t have it so I refuse to test you for it, besides iron is good for you!” “You need to worry about being iron deficient more than you need to worry about being iron overloaded.” If a patient runs into any of these comments, another doctor should be found that will run the blood test. No one can tell if a person has hemochromatosis without these blood tests. Twice as many people are iron overloaded as compared to those who are iron deficient.
Men, women, and children of all ages can have hemochromatosis. Once many of the symptoms appear, the disease is in its advanced stages and damage to the body has been done. If the blood tests indicate hemochromatosis, some doctors require a liver biopsy, which costs a lot, before beginning any treatment. In a liver biopsy, a sample of liver tissue is removed with a large needle and stained with Prussian Blue to reveal the iron.20 Additional information about the liver will be known, but it will not change the decision about the treatment. If stored iron was essential to for life and its removal was dangerous, this might make sense. Since stored iron is not essential for life and the removal from the body is not dangerous, this may lower the risk of heart attacks, cancer, and other diseases even in people without hemochromatosis.21 Some patients do not want the liver biopsy and treatment is not started because the doctor insists on the liver biopsy.
The logical treatment for hemochromatosis is phlebotomy, or bloodletting, but it was not thought of until the 1950’s. In 1951, Dr. William H. Crosby was refused permission to treat a patient with phlebotomy.22 In 1958 in a medical meeting, someone shouted “barbarism” during a discussion about the treatment. The removal of a pint of blood gets rid of 200 milligrams of iron.
The blood loss creates a mild anemia.23 The bone marrow cells respond by speeding up the production of red blood cells. In some cases, erthropoietin can be injected to boost red blood cell production.24 This treatment is expensive and not needed for most patients. The iron is removed from the storage sites in the liver and other overloaded tissues. The doctor writes a prescription for phlebotomies good for a year.
This is kept on file at a local blood bank. The patient keeps a copy of the prescription to use when traveling. In the beginning, a patient needs weekly or twice weekly phlebotomies. Before each treatment, the hemoglobin must be ten or the hematocrit must be thirty-five percent. After the iron stores are depleted, the patient must go on a phlebotomy schedule for life.
Most doctors experiment with two to six times a year for the first year. After that time, adjustments to the schedule are made. A West German study determined that iron overload victims without any signs of cirrhosis of the liver could live a normal life time if phlebotomy was begun immediately.25 Even if the liver has cirrhosis, there was a seventy-five percent chance the patient could survive with treatment. The study also showed improvement in heart conditions, liver spots, and liver function. Diabetic conditions and arthritis improved in some patients.
People with hemochromatosis are not the only ones that need to take some precautions against iron overload. Following are some suggestions for all people to consider: Know your iron level – reduce iron intake if test show iron stores of 150 or above Eat less red meat – will reduce both cholesterol and iron Monitor supplemental iron intake – switch to cereal and vitamins with no iron fortification; anemic patients should not stop taking supplements without consulting a physician and asking for test to check their iron stores Give blood – can reduce ferritin to a safe level of under 50 in men and under 25 in women Bibliography 1 Chazin Suzanne, “Is iron making you sick?” Reader’s Digest, October 1995: pp. 139-143 2 Hennessy, Tom, ironbk.html, [online]. Available: World Wide Web: http:// www.nucleus.com/, Directory: /watchman /, File: ironbk.html 3 Chazin Suzanne, “Is iron making you sick?” Reader’s Digest, October 1995: pp.
139-143 4 Hennessy, Tom, ironbk.html, [online]. Available: World Wide Web: http:// www.nucleus.com/, Directory: /watchman /, File: ironbk.html 5 Rouault Tracy. “Hereditary Hemochromatosis.” JAMA. June 23: 1993, pp. 3152-3154 6 Hennessy, Tom, ironbk.html, [online].
Available: World Wide Web: http:// www.nucleus.com/, Directory: /watchman /, File: ironbk.html 7 E. Beutler, “A strategy for cloning the hereditary hemochromatosis gene,” Blood cells, Molecules, and Diseases, November 15, 1995: pp. 207-216 8 OMIM Staff, “*235200,” [online]. Available: World Wide Web: http://www3.ncbi.nlm.nih.gov/, Directory: /Omim/, File: {inline} 9 Rouault Tracy. “Hereditary Hemochromatosis.” JAMA. June 23: 1993, pp.
3152-3154 10 Chazin Suzanne, “Is iron making you sick?” Reader’s Digest, October 1995: pp. 139-143 11 Matson Mandy, “Do you have iron overload?” Parade Magazine, Sunday, August 4, 1991: p. 8 12 Matson, Mandy. “Can too much iron kill you?” Women’s Day, May 16, 1995: p.86 13 Chazin Suzanne, “Is iron making you sick?” Reader’s Digest, October 1995: 139-143 14 Chazin Suzanne, “Is iron making you sick?” Reader’s Digest, October 1995: 139-143 15 Thomas, Sandra.
(1995, December 30). Hemochromatosis [e-mail to KGMQ01A],[online]. Available e-mail: 16 Thomas, Sandra. (1995, December 30). Hemochromatosis [e-mail to KGMQ01A],[online].
Available e-mail: 17 Iron Overloaded Diseases, Hemochromatosis Fact Sheet, By Sandra Thomas. North Palm Beach, Florida: 1993 18Iron Overloaded Diseases, Hemochromatosis Fact Sheet, By Sandra Thomas. North Palm Beach, Florida: 1993 19 Thomas, Sandra. (1995, December 30). Hemochromatosis [e-mail to KGMQ01A],[online]. Available e-mail: 20 Rouault Tracy, “Hereditary Hemochromatosis,” JAMA.
June 23: 1993, pp. 3152-3154 21 Sullivan Jerome, “Liver biopsy before treatment? No!” Ironic Blood, July 1995: pp. 1-2 22 OMIM Staff, “Hemochromatosis, Treatment to Alleviate Injury,” Arch Intern Med, Volume 146 – October 1986: pp. 1910-1911 23 Matson, Mandy. “Can too much iron kill you?” Women’s Day, May 16, 1995: p. 86 24 Sullivan Jerome, “Liver biopsy before treatment? No!” Ironic Blood, July 1995: pp.
1-2 25 Hennessy, Tom, ironbk.html, [online]. Available: World Wide Web: http:// www.nucleus.com/, Directory: /watchman /, File: ironbk.html.
