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Leslie N. Johnston, DVM DISCLAIMER: I am not your Doctor Reason for this paper: An effort to make Hemochromatosis, too much iron, or iron overload, household words or phrases to as many people as possible, and to point out the dangers of too much iron. Coming out the gate, let me tell you that I am not anti-iron in the body. I am only anti too much iron, and the iron that is not properly bound up for protective and/or useful reasons. What is the definition of Hemochromatosis?
Hemochromatosis is a bad name for iron overload, or too much iron built up in the body tissues. It is this iron build up that can and usually does cause many kinds of health problems and even death. The death from iron overload can be a sudden death or drawn out over a long and miserable dying process for the patient, both male and female, as well as their families and friends.
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I dont like to use the words I or me in what I write, but in this case it is necessary. What I say in this paper is not boasting or bragging or to build myself up. The thing is, I have been there, done that; I know and I live with Hemochromatosis. I have seen many others in the same boat. Most of the time when you read about Hemochromatosis, it will be written that it usually has symptoms dealing with the heart, skin, bones and joints, diabetes and/or liver problems. A medical professional may even tell a patient that he or she must have a triad of these symptoms. Well, the deal is . . . the symptoms that I am listing are simply a drop in the bucket just a few symptoms to start the list. I will try to list over 100 signs, symptoms, or diseases which may be indicative of too much iron stored in abnormal places or tissues which may ultimately lead to many health problems. The main type of iron overload that I will be talking about here is the absorption of too much iron due to a heredity condition (disease if you may) known as Hemochromatosis, and there are mainly three genes involved. These genes are located on chromosome #6 at sites which I call the 282, 63, and 65. The thing is, the last time I heard of how many genes were involved with iron loading, there were over 20 in number. The question remains, how many have been found since then? There are other causes of iron overload such as Sickle-Cell Anemia or Thalassemia which we call iron loading anemias. Anemia does not spell iron deficiency in all cases. One has to have a deficiency of iron in the diet to have what is called iron deficiency anemia, or some other physiological problem that prevents the absorption of iron as needed. With iron overload, the patient usually has heredity traits or genes which cause the problem. There is a type of iron overload called acquired iron overload from just too much iron in the diet, or from taking in too much iron, or taking too many blood transfusions. Iron is a vicious and mysterious substance to the body if not properly bound up to be controlled by the body. When you read about the valance of iron it is usually referred to as Fe++ or Fe+++, but it can have a valance of up to Fe++++++++. This is why I think iron can be so vicious. If you do not think iron is very reactive, simply put a drop of water on a new piece of steel and
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leave it over night and see what happens. Or, take a look at the old tin roofs around about you, especially on old barns on the farm, to see what it does to the zinc coating. I have never seen a reference to this, but I say that maybe this could happen in some cases to make iron even more vicious within our bodies. Iron pushes other essentials out of the way and essentially causes a deficiency of those metals due to its very high affinity constant. I will start at the top of the body by naming these signs, symptoms, or diseases with my comments as I go along.
1. Hair loss
One would probably think hair loss would be unimportant: well, it is important! When one goes to a doctor for the first time, we are usually provided a form to fill out listing signs, symptoms, diseases or conditions hair loss may certainly be one of these items. I would say that hair loss in itself is not too important to our health, but it sure could be one of the first symptoms to diagnose Hemochromatosis. The first hair loss usually starts from those places where the sun dont shine, that is the pubic hair and hair from the arm pits, thence the body hair, facial, and then the eye brows. You may wonder why there is so much hair on the shower drain after you shower off. I would say that you are in the late stages of the diagnosis for Hemochromatosis if you notice that your eye brows are about gone.
2. Skin
The skin may not show any signs at all, but with true Hemochromatosis there usually will be a color change including either a bronze or slate color. The further south you go, the more bronze it may be and the further north you go the more slate it will be. This is why Hemochromatosis is sometimes referred to as Bronze Diabetes. I have to say that too much iron in the skin makes in the skin more subject to sun damage.
4. Melanoma
There are many references which indicate increased chances of this dreadful disease in patients with iron overload.
5. Bones
There is no doubt that iron overload is a cause of Arthritis, and it may be the primary cause. Arthritis may be one of the first signs that a patient has iron overload, or Hemochromatosis if you may. It would probably start in the index and middle knuckles of the hands, and from there it may occur in the knees, ankles, hips, wrists, and by all means, do not forget the sternum bones. I have seen very little mentioned about arthritis of the sternum. This sternum arthritis may start as early as the teens. The first sign may be that when stretching a pop may be felt in the chest bone (sternum). This may be a little painful and get worse as one ages until your sternum bones ankylose to form, more or less, a solid bone in the chest. The pains associated with this process may lead to anything. The pains may radiate in the chest wall making one think that they are having pain associated with a heart attack. This pain may be so severe, that we go into a panic attack and head to the
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emergency room where all kinds of procedures can come about . These pains may be in a little bit of a constant mode. There is no telling how many cardiac diagnostic tests and procedures one may be put through including even heart catheterization. After all of this, one would probably be sent home with the instructions, We could not find anything wrong with you, but if you have any more symptoms, please dont hesitate to get in touch with us. It is important to note that the routine cardiac diagnostic tests and procedures do not routinely include an iron profile or instructions to follow-up with a primary care physician to obtain an iron profile. They may or may not have run a complete blood count (CBC) on you and failed to pay attention to your mean cell volume (MCV). The MCV is a pretty good indicator of iron overload if the readings are high. If the MCV reading is above 100, maybe less, this test is almost diagnostic for Hemochromatosis. It is my opinion that if the MCV reading is over 95, one should head to the blood bank as often as it takes to get the MCV down to about 90. Arthritis is one of the problems that the treatment for Hemochromatosis will not help to get better in a high percentage of cases. Treatment for Hemochromatosis may stabilize arthritis or even help the condition in many cases. Early diagnosis and proper treatment for Hemochromatosis may even prevent most of the arthritis associated with Hemochromatosis. My hip joints were painful and grinding like mill stones 32 years ago and got well shortly thereafter with no problems since, but my knuckles have gotten worse and so have my knees and ankles.
6. The Brain
This is what I call a malfunction junction if the brain has any amount of iron overload in any part of it. It reminds me of being on Interstate 40 in Knoxville, Tn about 7:30 in the morning, especially with slightly icy conditions.
10. Parkinsons disease 11. Lou Gehrigs disease 12. MS or multiple sclerosis 13. Schizophrenia 14. RLS or restless leg syndrome ???????? - in around about way, I say. 15. Loss of memory 16. AIDS or acquired immunodeficiency syndrome 17. A loss pigeon sense, in other words, Homing Pigeons. You cant
tell what direction to go in. Some may call it disorientation.
18. Pineal Body Melatonin and Seratonin 19. Friedreichs Ataxia 20. Tardive Dyskinesia 21. Huntington,s Disease 22. Down Syndrome - we all know that Down syndrome is a heredity
problem but iron is related to it as in Alzheimers disease.
28. Sweating
It is for sure that excessive sweating is the name of the game for Hemochromatosis patients. However, for athletes and for folks who work very hard and sweat a lot, this could actually lead to iron deficiency and lead to a change in their diet containing more heme iron such as red meats. I would prefer this over taking iron supplements.
30. Headaches
It is difficult to imagine how bad and painful and for how long these headaches can be - so painful they will make one do almost anything to get rid of them. Your doctor may have to prescribe some pretty stiff medicine to achieve relief from the symptoms and usually it is only temporary. These dont have to happen to all that have Hemochromatosis, but it did to me in a very serious way. Since the first phlebotomies in my initial treatment, I have not had a serious headache. I have had a few that I can count on one hand, and comparatively they were very minor in nature. You or your doctor probably wouldnt think of headaches as a reason to test a patient for iron overload, but for sure it is. This has to be that iron reacts with the surface of some of the brain cells to cause this problem, and other reactions as well. Looking back, I have to say that a lot of people diagnosed with migraine headaches may have had or still have iron overload which is the cause of them in the first place. De-ironing took care of mine completely! What a great life without those very severe headaches - no question about it in my case. If you have this same problem and find that you have iron overload, you most likely will find that de-ironing will take care of this problem as well. It would be fantastic if this would be proven to be true as the real reason for so many headaches. They tell me that a bad wife can cause headaches; now, I dont think a bad husband could cause a headache. Keep smiling, and get your iron levels checked for sure if you have chronic and/or severe headaches. Headaches fall in line with Chronic Fatigue Syndrome, IBS, and Fibromyalgia. Did your doctor check your iron levels, especially for iron overload, at the time he diagnosed you for these so called problems or conditions? If he didnt, then I say you should go back to him and make sure he does just that or change doctors. It is a must that these tests be included in your blood workup before your doctor makes a diagnosis of so called Fibromyalgia, Chronic Fatigue Syndrome and IBS. The thing is, iron overload may be the cause of, and I bet it is, all the signs, symptoms, and diseases listed for these conditions -- because all of these, or most of these, are symptoms of Hemochromatosis or iron overload!
33. Ears
A lot of people with iron overload complain of tinnitus and problems with the middle ear which has a lot to do with stability, so that part could be affected also. This has affected me, and the treatment for Hemochromatosis took care of it. After standing up from a squatting or sitting position, the person with Hemochromatosis may feel his heart pounding, feel faint or unstable, especially so before being de-ironed.
34. Eyes
The findings of eye problems associated with iron overload havent been on the books for very long; now it is known that iron overload does have a lot to do with both cataracts and macular degeneration, especially with the wet type of macular degeneration. While in practice of veterinary medicine, we always associated cataracts with Diabetes and it was so. Google
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cataracts iron overload and macular degeneration iron overload and see what you come up with. Some cataracts are associated with high Ferritin readings, and bleeding the patient does not help. Evidently this Ferritin has very little or no iron in the Ferritin molecule.
35. The ring around the collar and the blackened pillow case.
Of course, this could be due just to dirty living, but it is also associated with Hemochromatosis, and is due to heavy sweating especially at night. Your shirt collar, of any color, and pillow case will turn to a yellow or to a blackish color over time these fabric stains are impossible to remove. Sweat contains a lot of iron, and this is the problem; this discoloration is due to iron deposits in the material. This could be Mother Natures way of helping to deiron you. You will or can wake at night and your bed may be sloppy wet, so to speak, and you will have to turn your pillow over and move to another spot in the bed to sleep more comfortable the rest of the night. You may also have to change your nightwear during the night. The next morning you may need to change your night wear and your bedding. It can be that bad night after night. Believe it or not, these signs or clues by themselves could be enough for you to insist to your doctor that he check you for iron overload. If your doctor tells you that you are crazy about this, then I suggest you change doctors and find one who knows about Hemochromatosis. The rest that you got from a night like this may make you feel like you need to go back to bed for another eight hours of sleep. I cant tell you why high iron causes these sweats, but it is probably due to the iron enhancing minor infections somewhere in your body and probably the gut associated with that IBS diagnosis.
with silver nitrate sticks to cauterize them which did no good. I went back for the same procedure and it didnt work either. That is the time I should have been diagnosed for Hemochromatosis, but what was known about Hemochromatosis 65 years ago? Almost zero! I had a great friend who died from a type of blood cancer that ate up his red blood cells, and he required many blood transfusions. When he died, he had a Ferritin reading of over 4000. Did this patient have Hemochromatosis? - good question. Patients requiring many blood transfusions may die from the iron build up which will lead to many of the signs, symptoms, and diseases spoken of in this list. I wonder if iron chelation treatments would have helped this patient along with his other treatments? This could be related to a Vitamin C deficiency caused by iron overload, and just like the nose bleed, Hemochromatosis could be the cause in other vital tissues such as the brain causing strokes caused by hemorrhages there. You may have adequate Vitamin C in your diet, but too much iron will destroy it resulting in a Vitamin C deficiency. The not so funny thing in that I took radiation treatments for prostate cancer about five years ago and as a result, I got radiation burns of the colon which happens often. This led to severe bleeding, and required about 20 units of blood given to me over a six week period of time. I went to three different doctors for this who had me take many very expensive medicines none of which were effective. Finally I was sent to a colon doctor by my radiologist who took about one dollars worth of Formalin, and applied it to the lesions for four treatments, and a great cure resulted - how great it was! After about 3 months, I had to start my phlebotomies again to keep my iron levels in check. I have to say it has been a pretty good life ever since then for about 5 years. And now comes the gastro intestinal track, and let us start with the mouth:
37. Gums
Dry mouth, iron deposits in the salivary glands, could be the problem causing malfunctioning of these glands, and more subject to infection and color change.
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39. Teeth
I tell you what: you just spit up, belch, and have GERD (gastro intestinal reflux disease), or indigestion enough and long enough and you may find your teeth etched from the acid content of your stomach. No telling what this can and does lead to. More later.
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It was asked at a meeting I attended some 20 years ago, how does diarrhea work with Hemochromatosis and the answer was, it works like the cowboy diarrhea, it runs in the genes, and literally it does - both ways. If you dont have proper pH control in the entire gastro intestinal tract, you are in big trouble. Ph control is very important for control of the friendly bacterial survival and function in the gut.
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Lactose intolerance and IBS can and do mimic one another, so make sure your doctor rules out iron overload before he makes a diagnosis of IBS. Of course, add Fibromyalgia and Chronic Fatigue to the list also. The tests should include a CBC, paying particular attention to the MCV (mean cell volume) and an iron panel including serum iron, ferritin TIBC (total iron binding capacity) and/or UIBC (unbound iron binding capacity). From this iron panel you can get the percentage of saturation of transferrin. But, you will have to have a doctor who knows how to interpret the results. You might want to have genetic tests as well. This would be great. Then spread the word to your relatives if you are positive for Hemochromatosis.
53. Colon
There is no doubt that too much iron is associated with cancer of the colon. Fortifying or adulterating our food with iron should be reconsidered immediately.
The Liver . . .
54. Icterus
This is the yellowing of the skin and the whites of the eyes and other body tissues. I would suspect that this would show up after a lot of liver damage has taken place.
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to go back and run the iron panel. Your doctor will probably have only a couple of these liver function tests performed, and that should be sufficient.
59. Hepatosplenomegaly
This is the enlargement of the liver and spleen. At least in the beginning you will have liver enlargement, but with cirrhosis, you can have anything. At this point the patient would be in big trouble.
60. Hepatoma
Patients with untreated Hemochromatosis are about 220 times more likely to develop cancer of the liver than the normal population.
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This is easy for me to believe as I saw my great Daddy and two uncles die from this same complex, and they never knew what caused the problems. And, would you believe the same things happens today, due to not getting diagnosed for Hemochromatosis in time and getting the proper treatment in time. It is really very sad that this still happens even today. I was lucky to be confirmed to have Hemochromatosis at about 50 years of age, and I am still going pretty strong at 84 years of age. Would you believe that I was almost 99% self-diagnosed with this mess? Aint bragging just lucky. Did your doctor who treated you for ulcers have an iron panel done for you at the time? Good chances he did not!
65. Insulinoma
Hey folks, this is a bad one, and it usually secretes too much insulin resulting in low blood sugar and many bad ramifications.
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Now let us go up to the Pituitary Gland which is a little slightly encapsulated gland by the hypothalamus just below the brain. Some will say that this is a part of the brain. I would say that the thalamus is concerned somewhat with these glands as well. . .
69. Iron deposits in either the pituitary or hypothalamus and you got
problems over the entire body. These glands are closely associated with the thyroid, parathyroid, adrenal glands, as well as the ovaries, breast, uterus and testicles.
70. Breakdown of pituitary function over the thyroid 71. Breakdown of the thyroid to send signals to the pituitary gland 72. Breakdown of the pituitary to send signals to the parathyroid gland
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74. Hypothyroidism 75. Hyperthyroidism, Osteopenia, Osteoporosis 76. Hyperparathyroidism 77. Hypoparathyroidism 78. Excess iron deposits in thyroid gland
Found in about four percent of Hemochromatosis patients, and then thyroid functional problems.
80. Iron deposits in these glands destroys functions 81. Axis between these glands
There is an axis between these glands: pituitary to thyroid, to the parathyroid, and the pituitary to the adrenal glands and gonads. This is a two way street which runs both ways and in reverse. So, if you got troubles on one axis, then you got troubles on the other end of the axis and vice versa. Surely iron deposits in either end of these axisex couldnt have anything to do with these glandular problems, could it? Sure it could and does. Iron deposits in either one could be and is the problem in too many cases.
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87. Hemorrhage in lower legs red leg syndrome or iron deposits in venous leg ulcers
Of course, there is a cause of this and it could be from a sudden fall landing on your feet, standing on your feet for long hours, a venous drainage blockage problem, or accidental injury. It is known to have a connection with the hereditary genes associated with Hemochromatosis. (Inflammation in venous disease, Int Angiol 2008 Oct: 27(5):361-9 Zamboni P, et al). There can be a lot of swelling due to fluid build up which is not reduced with diuretics. They did not work for me. I injected the swollen areas with multiple one quarter to one half ml doses of Desferal (Deferoxamine) and it worked beautifully. The fluid leaked out of the injection sites over about a three or four day period of time. I dont know if the
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Desferal had anything to do with it or not, or if it was just the puncture wounds which did the trick. The Desferal did not take any of the reddish brown color out of the tissues that I could tell. I AM NOT YOUR DOCTOR, SO ASK YOUR DOCTOR ABOUT THIS BEFORE YOU TRY ANYTHING LIKE THIS. As well, I think that my phlebotomy treatments have helped keep this condition under control.
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90. Infections
Dr. Eugene D. Weingberg, Ph.D. of Indiana University lists about 50 different pathogens that use iron or have to have it to replicate and to cause infection. What a great man he is. Iron supplements can activate so-called cured cases of malaria, Bangs Disease, Undulent Fever, and TB. Borelia burgdorferi, which causes limes disease, is one of the very few organisms that does not use iron for its transitional metal.
91. Botulism
I bet you never saw a flock of chickens that had botulism infection in it, did you? This is a sad sight to see even in chickens some well, some dead, some getting ready to die, some making a miserable recovery that will leave them with all kinds of neurological signs. These recovered chickens will try to go in one direction and wind up going in another; they will try to peck at foods and peck all around it frustration, you name it. This is also a sad thing to happen to a person, mainly children. It has been proven that iron fortified (adulterated) baby foods will increase the incidence of botulism in these babies. Do you want to still feed your babies iron fortified baby foods? I cant imagine having a child with this infection.
92. Libido
Loss of sexual desire, and this could be from either partner.
93. Divorce
Loss of sexual desire from either partner, and it would probably create a bad relationship, and here we go you name it.
Now let us go to the complete blood count (CBC) with MCV included:
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95. Hemoglobin will most likely be in the upper limits of limits of normal or higher and/or above. 96. Hematocrit
The heatocrit will usually be in the upper limits of normal or higher.
***** These readings ALONE are not to be used in the diagnosis of Hemachromatosis*****
Really, your doctor should include along with these tests at least a serum iron and a total iron binding capacity (TIBC) test, and/or a total unbound iron capacity (UIBC) with the CBC, and give instructions to the lab that if these readings are high, to go ahead and run a Ferritin test as well. Including a Ferritin test with the original testing would be best. These readings will probably be in the high normal or above.
***** When I talk about a CBC and an iron panel these readings will be from one end of the scale to the other, kind of like a see-saw: iron deficiency or anemia on one end and iron overload on the other, so you havent lost your money either way *****
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99. Weakness 100. Tired 101. Sleepy all the time 102. Alcohol Intolerance
If you have just been diagnosed for Hemochromatosis, it is best that you abstain from alcohol until you get on maintenance, and maybe from then on. Either way, alcohol should be used only in very moderate amounts. Dont terry at the wine cellar. Drink a little drink for your stomachs sake and for other infirmities only.
another raw oyster in your life, and I do mean NEVER! Pasteurize or roast them or cook them until just enough that they are pasteurized, and enjoy them making for a very good day for yourself.
There is no doubt about Diabetes I and II as well as insulin resistence all being related to iron overload. With Diabetes II, iron butts heads with insulin like two wild rams do to establish their territory. Everyone with Diabetes and Hemochromatosis should read and search cross talk between iron metabolism and diabetes, August issue Diabetes 2002. http://www.ncbi.nlm.nih.gov/pubmed/12145144. There are several papers at this location. Diabetes with Hemochromatosis is why Hemochromatosis is called the bronze killer.
110. Gynecomastia
Enlarged breasts in men. This can show up from birth to older age with Hemochromatosis, and is a good diagnostic clue.
111. Heat and cold intolerance 112. Amenorrhea 113. Early Menopause
Both amenorrhea and early menopause are signs that iron status should be checked out. If you do have early menopause, head to the blood bank.
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the case of Sickle Cell Anemia and Thalassemia, for instance, it is the build up of iron in the body that causes more problems and even death. If you have anemia due to iron deficiency, then you need to improve your diet. Donate at least once a year better: three or four times a year.
Have I listed too many items to get the point across? I could have listed many more.
References:
If you want to do your own research, type in your search engine: Hemochromatosis and you can be there forever, or Eugene D. Weinberg, Ph.D. Hemochromatosis or, Lists of Symptoms of CFIDS, Katrina Berne, Ph.D. or, James Barton, M.D., Hemachromatosis or, Jerome Sullivan, M.D., Hemachromatosis Diagnosispro hemochromatosis xerostomia http://en.diagnosispro.com/disease_comparison-for/hemochromatosisversus-xerostomia/14667-21271-2.html Type in any entre you like from the above, like: irritable bowel syndrome hemochromatosis and see what you come up with. The best one is: 1. Weinberg, E. D., Ph.D. Edited by Cheryl Garrison. Exposing The Hidden Dangers of Iron. Cumberlin House, Nashville, Tennessee.,
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available through Iron Disorders Institute, http://www.irondisorders.org/hemochromatosis 2. Edwards, C.Q.; Griffin, L. M.; Goldgar, D.; Drummond, C.; Skolnic, M. H.; Kusher, J. P.; Prevalence of Hemochromatosis among 11,065 Presumably Healthy Blood Donors. New England Journal of Medicine, 1988, 318, 1355-1362. 3. Diet and Your Health, National Research Council, Washington: National Academy Press, 1989. 4. Weinberg, Eugene D., Ph.D., Cellular Iron Metabolism in Health and Disease, Drug Metabolism Reviews, 22 (5); 531-579 (1990). 5. Weinberg, Eugene D., Ph.D., Iron Withholding: A Defense Against Infection and Neoplasia, Physiological Reviews, Vol 64, No 1, January 1984. 65-102. 6. FDA Veterinarian. Washington: Dept. of Health and Human Services, Sept-Oct., 1989 7. Smith, Russell L., Ph.D., with Pinckney, Edward R., M.D., The Cholesterol Conspiracy. St. Louis, Missouri: Warren H. Green, Inc., 1991. 8. Iron Overload Diseases Association bulletin, North West Palm Beach, Fl., Nov-Dec 1992, quoting Harry Bates, Ph.D. of MetPath Labs. Also, bulletins from IOD for years. 9. Findlay, S., Podolsky, D., Silberner, J., Iron and Your Heart, U. S. News and World Report, Sept. 21, 1992. Front cover and pages 61-68. 10. Emery, Thomas F. Iron and Your Health, Boca Raton, Boxton, and Ann Arbor: CTC Press, Inc., 1991. 11. Lauffer, Randal B., Iron Balance, New York: St. Martins Press, 1991. 12. Barton, James C., M.D., Iron Overload in Hemochromatosis Heterozygotes jcb 5/92 hetero.iod.
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13. Conversation with Dr. Harry Bates of MetPath Labs, June 1992. And hand out at 1992 IOD symposium from MetPath Labs. 14. Federal Food, Drug, and Cosmetic Act, as Amended and Related Laws, 1985. Washington: Superintendent of Documents, U.S. Gov Printing Office. 20402. 15. Books by Isadore Rosenfeld, M.D., Symptoms, 1989, and The Complete Medical Exam, 1998. New York: Simon and Schuster. 16. Peterkin, B., Nichols and Cromwell, C., Nutritional Labeling. Washing: US Dept. of Agriculture Info. Bulletin No. 382, 1975, pages 8 and 47. 17. Crawford, Roberta. The Iron Elephant, Glyndon, M.D.; Vida Publishing, Inc., 1992. 18. Sullivan, Jerone L., M.D., The Iron Paradigm of Ischemic Heart Disease, Am. Heart J. 117, 1177-1189, 1989. 19. Johnston, Leslie N., D.V.M., My own little 48 page booklet: Iron Overload HEMOCHROMATOSIS Too Much Iron. 5000 copies privately published, 1993., all sold or given away. 20. My own papers listed on this web page.
There are so many more references that could be listed. If you want or need additional references, just refer to those above for them by the hundreds.
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