Renewed Health Today

I have always had high blood iron for as long as I can remember. I learned this in college when I started donating blood through the Red Cross. My blood was always the darkest and in the minor iron test then sank in the solution quickest. I have Type O- blood so I was popular with the local Red Cross. I donated blood most of college years. In the military the interest in donating began to change, twice I was escorted to the base hospital to donate blood. I learned officially that I had high iron blood with no discussion of what that really meant.
After I resigned from the military, the Red Cross found me again and called every month for year to donate blood. I lost interest as a result of being hounded.
In my mid forties I began to pay more attention to my annual physicals since I could tell that I was getting older, less flexible and could tell the effect of age on overall health. I remember one extensive blood test where my doctor had me see a specialist about my high iron. The specialist told that I had hemochromatosis. Apparently my iron levels were not too high to worry about because the doctor told me to not take iron supplements because genetically I gathered iron from my meals while most people had a difficult time doing the same. That was about it. He did tell this was a condition I inherited and that was it.
But, about 6 months ago I was feeling tired or groggy some days so I asked my doctor about this and he said I had to donate blood to reduce my iron levels. My blood iron was high. I had tried donating a couple of years ago and the Red Cross informed that my blood was not acceptable. The Red Cross did not really tell me why. I asked my doctor why. He said there was nothing wrong with my blood. The Red Cross does screen blood for acceptability, but their tests are not very technical or extensive. I have since learned that hemochromatosis is an expensive test to do, more that the Red Cross wants to invest. My blood is fine, but is thrown away after it’s drawn.
After my first therapeutic phlebotomy, blood donation by prescription, I felt as though I had suddenly lost 10 pounds and my energy levels were high for a week. After 3 donations I know I am on the right track and look forward to better health with the promise of normal levels of iron soon.
I have become intrigued with what hemochromatosis means for me. I have found that like diabetes it’s a personal condition and is different for everyone. I did find out that had I continued donation blood since college that it possible that I may not have developed diabetes. A complication from hemochromatosis is diabetes. Since the pancreas is adversely impacted by high iron which and lead to diabetes.
Since I can pass hemochomatosis to my children I have educated them on the legacy and how it can affect there lives latter. I have recommend they be tested to find out if the have inherited the condition or are carriers for their children. For now I recommend they develop the have of blood donation to keep their iron level down and be good citizens.
So there is a relationship between hemochromatosis and diabetes. There can be a strong genetic tie. I have included to frequently asked question with answers to share with those of you who are interested. I hope it will be of some help.

Q: What is iron overload, hemochromatosis?
A: Hemochromatosis is a genetic condition of abnormal iron metabolism that permits absorption of too much iron from an ordinary diet. Hereditary hemochromatosis is an autosomal recessive disorder. It is NOT a blood disease. It is also known as iron overload or iron storage disease. It is possible for someone who has never had an iron pill in his/her life to have iron overload.

Q: Can iron overload be acquired?
A: Yes, iron overload can be acquired. The genetic form is known as primary hemochromatosis, hereditary hemochromatosis (HH) or (HHC), or genetic hemochromatosis (GH) and idiopathic hemochromatosis (from an unknown origin), term which is rarely used anymore. The acquired form (through massive doses of iron pills or blood transfusions) is known as secondary hemochromatosis, acquired hemochromatosis, or transfusional iron overload.

Q: How common is iron overload/hemochromatosis?
A: Frequency of the abnormal gene is: 1 in 100-200 people has hemochromatosis and 1 in 8-10 people is a carrier of hemochromatosis. That’s approximately 32 million Americans who are carriers and 1.5 million Americans have the double gene which can lead to full blown hemochromatosis.

Q: Who is affected by iron overload/hemochromatosis?
A: Most affected people DO NOT KNOW they are accumulating dangerous stores of iron. Tragically underdiagnosed, no race, age, or gender is immune. The American Hemochromatosis Society (AHS) has made an official position statement and issued guidelines for diagnosis, treatment, and management of iron overload/hereditary hemochromatosis, including recommendations that all Americans age 2 years and older be routinely and universally screened for iron overload as well as genetic screening. All ethnic groups can be affected, but those with an Irish/Scottish/Celtic/British heritage have an even higher prevalence of the HH mutation. Hispanics (that’s me) and Afro Americans also have iron overload.

Q: How serious is iron overload, hemochromatosis?
A: The excess iron injures body organs and KILLS unless detected in time for adequate iron storage removal. It is a very serious disease, but quite benign if detected early before organ damage has occurred. That is why routine screening is so important. HH is a lethal but treatable disease. Don’t let anyone tell you that iron overload/HH is “nothing to worry about”.

Q: Is there anything that can be done to treat or prevent iron overload?
A: Yes. Hereditary hemochromatosis is one of the few genetic diseases which has a prevention plan so that all organ damage and premature death can be completely prevented. When the excess iron IS detected EARLY and is ADEQUATELY removed, the individual can enjoy a normal life span in normal health.

Q: What are the symptoms of iron overload, hemochromatosis?
A: Patients can have iron overload and NOT have symptoms (asymptomatic) and that is the best time to diagnose the patient. Many doctors have been taught to look for “signs and symptoms” of HH but by the time symptoms appear, it is often too late to save the patient’s life. Iron overload and storage in vital body organs can damage and may cause:

• chronic fatigue (the most common complaint by patients);
• cirrhosis/cancer of the liver (with or without a history of alcohol use);
• arthritis/joint pain;
• impotence/sterility/infertility; early menopause/irregular menses;
• hair loss; hair thinning
• diabetes (bronze diabetes, a darkening, graying of the skin not caused by sun exposure);
• cancer (cancer thrives on iron); (especially primary liver cancer)
• abdominal pain/swelling;
• weight loss;
• frequent colds/flu/infections, compromised immune system;
• headaches;
• hypothyroidism; (low thyroid)
• heart irregularities/heart failure/heart attack (especially in younger men);
• cirrhosis of the liver (with or without a history of alcohol use);
• hepatoma/liver cancer (the leading cause of death in HH);
• premature death.

Anyone with any combination of these symptoms, or a family history of these symptoms, should be tested for HH immediately. But remember, two important facts: 1.) There can be numerous generations of “silent carriers” of the mutation who never become ill and live to old age thereby giving a “false security” that HH doesn’t “run in the family” 2.) Some patients do not have symptoms until they are end stage and their lives cannot be saved. Early detection should be achieved through: 1.) Knowledge of genetic risk through DNA Testing 2.) Annual screening with serum iron, TIBC, and serum ferritin to assure that iron storage is not taking place.

Q: I went to the blood bank and they told me I was anemic; how could I have iron overload at the same time?
A: Blood banks do NOT screen for iron overload/hemochromatosis. They are basing their comments on the hematocrit or hemoglobin readings that they take prior to a blood donation (the finger prick test) and these are not the correct tests for iron overload storage! Yet blood banks continue to give out false information to their clients, telling them that they have low “iron” or even in some cases that their iron is high! The iron-overloaded person may be anemic at the same time. There are several types of anemia that are iron-loading! Hematocrit and hemoglobin are NOT tests for iron overload/hemochromatosis; ask your physician to test you with transferrin saturation (TS) which is calculated by dividing the serum iron by the TIBC (total iron binding capacity) and serum ferritin to confirm or rule out iron overload.
compound heterozygote).

Q: How many phlebotomies will I need to have a normal iron level again?
A: The number of phlebotomies varies from patient to patient depending on how high the initial iron overload is. A patient with early diagnosis may only have to give a dozen phlebotomies before going on a maintenance program for life; other patients, in advanced stages of hemochromatosis, may require 80 to 100 phlebotomies or more to “de-iron” themselves (”de-iron” is a term used to denote a patient who has reached a serum ferritin of 20 or a target goal set by his/her physician which is usually a serum ferritin below 150). You can expect each phlebotomy to reduce the ferritin approximately 30 points each time. So, a ferritin of 3000 might require 100 phlebotomies to reach the target goal. A ferritin of 300 might only require 10 phlebotomies to reach the target goal.

Q: How will I feel after so many phlebotomies? Are their side effects?
A: The reactions or side effects of phlebotomies differ from patient to patient. For patients who have a history of blood donation in their community, treatment is no different, since it is identical to a blood donation at your local blood bank. The only difference is that it is done more often (weekly) than voluntary blood donation (usually every 56 days) and therefore patients often report being fatigued and weak after numerous treatments, however, they are necessary to prevent damage to the patient or prevent additional damage to the patient, and to prevent death. If you are in “aggressive treatment” (at least weekly) you “may” experience varying degrees of tiredness and fatigue. For advanced patients undergoing vigorous weekly treatments for extended periods of time, some have reported that they have had to stop working or get assistance from family or friends with household chores and child care. Family members and friends should be informed that treatment is necessary to save the patient’s life and understand that physical and emotional support are essential for the patient’s successful completion of initial treatment. Other patients actually report feeling “invigorated” after each treatment with a few days of tiredness after each treatment and then back to normal. Be sure to discuss any side effects that you experience with your physician.

Q: Is hemochromatosis reversible through phlebotomy or must a patient undergo phlebotomy on a regular basis for the rest of his life? Does phlebotomy eventually ease the symptom so that this treatment may stop?
A: The symptoms of iron overload/hemochromatosis sometimes can be improved or even reversed. Treatment, however, should continue, for the rest of the patient’s life, usually at a rate of three or four phlebotomies per year, although this rate can differ slightly from patient to patient. Aggressive, weekly phlebotomy will eventually remove the stored iron in the body, however, the iron will once again accumulate if regular phlebotomy is not maintained for the rest of the patient’s life. Remove that stored iron as safely and quickly as possible and keep it out with regular phlebotomy for the rest of your life! Remember, once you are “de-ironed”, don’t stop! Bloodletting is for life and if you don’t regularly have blood removed, the iron will simply build up again and store in vital organs. Note: if iron overload is due to “acquired hemochromatosis” through iron pill ingestion for instance, then once deironed, the treatments can stop permanently.

Q: Is the blood I give during my treatment used as donor blood? The blood bank said they were going to discard it? Is there something wrong with my blood? I thought HH wasn’t a “blood disease” or infectious?
A: Some blood banks do use the hemochromatosis blood as donor blood, but most blood banks in the U.S. do not. There is nothing wrong with hemochromatosis blood; HH is not a blood disease, nor is it infectious. HH blood can be used as donor blood as long as it meets the standards and tests of the blood bank (i.e. free from HIV, hepatitis, etc.). HH blood is not contagious or infectious in any way. The FDA was petitioned by the late Victor Herbert, MD JD, of Mt. Sinai School of Medicine in New York City, NY, to use hemochromatosis blood as donor blood. Although the FDA did not immediately change their policy, more petitions followed. In the past, the blood bank was using what many consider to be an “outdated” policy which says that any patient who gives blood for a “medical reason” is a “motivated donor” and they feel that motivated donors’ blood is not as “safe” as other blood donations because donors might donate (in order to save their own lives due to the medical condition) when they personally know that they shouldn’t (i.e. they have HIV, hepatitis, etc.). The blood bank feels that people who are “motivated donors” will not tell them about HH so that they can donate blood for free to avoid the cost of phlebotomies. Leading doctors around the country have urged the AABB and the Red Cross to change their policies concerning HH patients, who are shown to be just as safe as the general public when donating blood. In 1999, the FDA approved the use of hemochromatosis blood as donor blood. Any blood bank can apply for a “variance” to use HH blood as donor blood. The FDA did not issue a mandate that all blood banks had to use HH blood as donor blood, but did give them the option to do so if they decided to do so. More than fifty blood banks around the USA accept and use HH blood as donor blood. If you want your local blood bank to use HH blood as donor blood, you can contact the blood bank director and discuss how their policy might be changed in the future. You can find a list of these blood banks on the AHS web site or the FDA web site. The American Hemochromatosis Society feels that HH patients are very “special” since they are “super donors”.

Q: Is there a special diet I should eat or foods I should avoid?
A: Basically, iron in the diet is not going to make much difference in relation to your treatment, however, it is wise to check the labels of processed foods for their iron content. For instance, certain breakfast cereals contain 100% RDA of iron as do other products. Avoid alcohol and vitamin C which enhance iron absorption, cooking in cast iron cookware, and never take iron pills or supplements containing iron. Hemochromatosis patients should not eat raw seafood or shellfish (cooked is fine) due to a bacteria (vibrio vulnificus) which can kill the patient within hours of ingestion (due to a compromised liver which many HH patients have) unless emergency treatment of antibiotics (tetracycline) is administered. (Note: this can also happen to fishmen who handle and clean fish). Drink tea and coffee with your meals which will help block the iron in the foods you do eat. For more details on diet, you can purchase “The Hemochromatosis Cookbook” by Cheryl Garrison available through any major book store, amazon.com, or the Iron Disorders Institute (IDI).

Q: Is iron overload/hereditary hemochromatosis “curable”?
A: Iron Overload is not curable if it is genetic hemochromatosis, hereditary hemochromatosis (HH). The patient will need to be monitored and treated for the rest of his/her life. However, iron overload is curable in the case of acquired hemochromatosis such as massive doses of iron pills, etc. Once the patient is “de-ironed”, he/she will not need to be treated anymore. For HH, we hope that research in the future will find a cure for this condition, until then, treatment and early diagnosis, offer the next best thing to a cure. In fact, HH can be prevented with early genetic screening and detection of the high risk gene mutations. In such cases, patients can be genetically screened, identified, and monitored, so that they will never have high iron at any time in their lives, thusly preventing organ damage and premature death.

Q: If hemochromatosis is a genetic disease, should other family members be tested? Which ones and when?
A: ALL blood relatives (not just the immediate family) of the iron-overloaded individual should be strongly warned to be screened immediately with the iron profile of serum iron, TIBC, and serum ferritin) and the new DNA genetic test. All should be monitored annually for the rest of their lives. This includes men, women (pre and post menopausal) and minor children. If the HH patient has children, the spouse should also be tested. Actually, everyone in our society should be tested, but especially family members. Due to the lack of public awareness and physician education about hemochromatosis, most family members are not screened and many diagnoses are missed as a result.