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Hemochromatosis 

IRON DISORDERS INSTITUTE Hemochromatosis Treatment
Currently, therapeutic phlebotomy or blood extraction is the most efficient means of tissue iron reduction. However, preventive measures may be incorported into diet and behavior that can reduce the amount of iron absorbed.

A phlebotomy is a procedure used to remove blood from a person. It is the opposite of a transfusion, which is a way to give blood to a person. Those with hemochromatosis (HH), also called iron overload disorder, and others with iron loading anemias, store excess iron in their bodies and must have phlebotomies to remove the iron. Excess iron in a person's body can cause damage to the liver, pancreas, pituitary, joints and heart. As a result of this damage, one can develop cirrhosis of the liver, diabetes, impotence, arthritis, and heart failure. Therefore, removing the excess iron as soon as possible is critical. People can lose small amounts of iron by simply taking half an aspirin a day. But for those with serious iron overload, the phlebotomy is necessary because it removes about 250 milligrams of iron with each treatment. When iron stores are high, swift action to remove the excess is critical. When tests Indicate you have iron overload......
A doctor's prescription or an order is needed to obtain the phlebotomies. Usually an order is written for weekly or twice-weekly phlebotomies until the patient achieves a slightly anemic state where hemoglobin is 10 g/dL and hematocrit is 30%. Hemoglobin is made up of heme which is the iron containing red part of the blood cell and globin which is a protein in the same red blood cell. Hemoglobin carries oxygen to the body's tissues and carbon dioxide away from those same tissues. Hematocrit measures the volume or amount of hemoglobin contained in a person's blood. Where phlebotomy treatments are done.....
Phlebotomies might be done at a blood donation center, as an outpatient in a hospital or even in a doctor's office. Your doctor will probably advise places that provide the treatment. Consider convenience of location, cost to do the phlebotomy, and how responsive the center is to your situation. Once you have determined the facility that will provide treatment, a trip to the lab is required. Before the phlebotomy may be done, hemoglobin and hematocrit will be checked. Usually centers have labs on site; the results will be forwarded to the attending nurse. These preliminary numbers help assure you do not become seriously anemic (not enough iron); the desire is to become only slightly anemic as a result of treatment. A person is entitled to the results of any lab tests. Keep good records.....
You may request a copy of lab work from the office manager in charge of records in the doctor's office. Obtaining lab results is highly recommended so that a journal may be compiled. Journals will become a valuable tool if you have to move to another town or seek treatment from another doctor. Knowing about your disorder and understanding the diagnostic process helps to speed recovery and avoid future health setbacks. The Procedure
After the preliminary tests for hemoglobin and hematocrit are finished, a nurse prepares you for the phlebotomy. Usually you will stretch out on a comfortable recliner chair. The nurse takes your blood pressure, temperature and heart rate (pulse). These numbers will be recorded on your medical chart for future reference. The nurse then waits for the lab to call with hemoglobin and hematocrit readings. After being notified levels are within a safe range, your arm will be prepared for blood extraction. A special band is tied around the upper part of the arm. This helps the vein to stand up. You may have to squeeze a soft rubber ball or make a fist several times to help the vein remain accessible. The nurse then swabs an iodine-based antiseptic on the vein and all around the area near the vein. This is to disinfect the area where the needle is to be inserted and to make certain no bacteria gets into your system during treatment. A special needle is then inserted into the vein. You might feel a little pinch, but it lasts only a second. A piece of tape is placed over the needle to keep it stable; you just sit back and relax. Some like to bring a headset with earphones or a good book to read during treatment. While relaxing, the blood flows from the needle, into a tube, and then into the blood bag. The blood bag sits on a special scale that measures the weight of the blood. When the bag is sufficiently filled, about one pint, the phlebotomy is complete. The speed with which the blood bag fills depends on the thickness/thinness of your blood. Drinking adequate amounts of water, at least 6-8 glasses a day for two weeks before the phlebotomy will help. If you are still in school, you may want to get permission to carry bottled water and drink at least 6 ounces each hour. While the blood is flowing out of your arm, you might think about all the iron that is leaving your system. About 250 mgs of iron are removed with each extraction. Think about how well you will be and the dreadful diseases you may avoid by having this procedure. You may be finished in as few as ten minutes or as many as thirty; again, it depends on your vein and thickness of your blood. After the Treatment...
After the phlebotomy, the nurse will remove the needle from your arm. You may need to keep the area bandaged or you may need to apply mild pressure if bleeding continues. You should rest for about 20 minutes following therapy. This is a precaution to insure you do not get weak or dizzy. You may be given a snack while you are resting and it is suggested you eat something after your therapy. Your blood will be discarded regardless of where you have the phlebotomy. HH blood is currently handled in the same way as contaminated blood. Efforts are being made to change this. Don't get frustrated or take it personally; your blood may be labeled contaminated, but you are not. Between phlebotomies...
You might consider learning to drink at least eight glasses of water a day, taking extra B12 with folic acid and vitamin E. These supplements help to build red blood cells, which assure adequate hemoglobin and hematocrit levels. Your doctor should recommend the amount you take of these vitamins because the dosage will depend on your weight and age. It is important to remember that just because a supplement is beneficial, taking more than the recommended dose does not provide a greater benefit; indeed, it may cause damage. Also, gulping great amounts of water prior to therapy is not wise; you may actually cause yourself to become water intoxicated, a serious condition. Use wisdom; implement diet changes slowly and with knowledge of the potential dangers associated with these changes. Diet tips.....
You also may consider eating more fiber, refrain from cooking in an iron skillet, and avoiding Vitamin C at mealtime. Fiber impedes iron absorption while vitamin C enhances iron absorption. Drinking tea with meals is helpful as the tannin in tea also impedes iron absorption. Decaffeinated tea might be the better choice; some physicians believe that too much caffeine can be unhealthy. Eat foods like fruit and juice high in vitamin C between meals. You should be aware that tobacco is rich in iron and that inhalation of this smoke directly or indirectly adds to your iron stores. Exercise is a good idea.....
Regular, intense exercise or taking aspirin daily will cause some blood loss and thus iron loss. However, you should consult your doctor before incorporating any of these practices into your daily routine. Aspirin can be dangerous for youths with fever and it can interact with some drugs. Your pharmacist may be able to provide you with drug interaction advise; if not, contact your doctor. Each person responds to treatment in a unique way.
You may need many phlebotomies or only a few. Much depends on age, the extent of saturation, one's physical condition including symptoms, and the speed with which an individual unloads iron. Your physician will help to determine this with a rough estimate of mobilizable iron. Note: The following calculation method provides a rough estimate only; it is not an exact science. Ferritin levels can be unreliable or skewed when low or very high, which can lead to distortion of estimated number of extractions. Also, individuals with liver damage such as cirrhosis will unload faster than those without liver damage. Other factors that may skew ferritin include presence of inflammation or infection. Used as a guideline to establish some benchmark of ferritin levels however, this rough calculation helps your physician determine a strategy for when ferritin can be measured so de-ironing progress can be evaluated and undue anemia can be avoided. Initial ferritin x 10= approximation of mobilizable iron in milligrams (mgs) in your body. Since each phlebotomy removes about 250 milligrams of iron, you can estimate how close you are getting to an acceptable level. Example: Ferritin of 195 x 10=an estimated 1950 milligrams of stored iron that can be removed with phlebotomy. The goal is to reach a safe ferritin range of 25-75ng/mL. Using the estimated mobilizable iron of 1950 minus 450 (to avoid total depletion of ferritin) you can calculate about how many treatments you might require Example: 1950-450= 1500 mgs of iron needed to be removed. Each treatment removes about 250mgs of iron, therefore:1500 divided by 250=6 treatments needed to reach a safe ferritin range. Your ferritin may actually drop below the 25-75ng/mL range; a ferritin below 20ng/mL is considered anemia. In the course of treatment, your physician may recommend that your target ferritin be lower than the 25ng/mL whereby you might experience symptoms of anemia. Iron Disorders Institute considers this practice outdated and suggests de-ironing not include forced-sustained anemia to achieve de-ironed status. Additional research and study must be done to determine benefits of de-ironing practices. Since Iron Disorders Institute is mindful of discomfort and problems related to anemia, IDI suggests a more conservative step down process of treatment using phases. Prior to treatment, a patient will have demonstrated a fasting ferritin greater than 200ng/mL (females) or 300ng/mL (males) with an accompanying transferrin iron saturation percentage value greater than 45%. Phase one: When ferritin is above 1000ng/mL phlebotomy treatments will be aggressive usually as frequent as twice weekly while tolerable and until ferritin drops below 1000ng/mL. Using the estimated number of extractions (ferritin X10, etc.) your physician will have an approximate timetable for when ferritin might be nearing phase two or when ferritin is below 750-800ng/mL. Phase two: when patient has had an estimated number of treatments sufficient to drop ferritin below 1000ng/mL (preferably 750-800ng/mL) ferritin should be measured to confirm patient's un-loading pattern. Frequency of treatment may slow down from twice weekly to once a week or even to every other week depending upon judgement of attending physician. During phase two pre-treatment hemoglobin of 12.0g/dL -13.0-g/dL (females and 12.5g/dL to 13.5g/dL (males) is best as red blood cell production is better challenged when hemoglobin levels are within this range. During phase two: Patient might consider incorporating routine exercise (twenty minute walk three times week minimum), adequate water intake (6-8 8oz glasses per day) and vitamin supplementation. Vitamin supplementation might include: B complex (without C) plus extra B6, Folic Acid and B12. Supplement amounts would depend upon patient's age, weight, gender, and condition such as lactation, pregnancy, or presence of other medical conditions and established by attending physician. Except for B12, levels are provided in Food and Nutrition Board, Institute of Medicine-National Academy of Sciences, Dietary Reference Intakes: Tolerable Upper Intake Levels (UL) for Certain Nutrients and Food Components. Phase two treatment continues until patient reaches ferritin of 300ng/mL (male), 200ng/mL female. Ferritin might be measured at this time to evaluate un-loading pattern. Treatment frequency might be reduced once again from monthly or every six-eight weeks, maintaining pre-treatment hemoglobin above 13.3g/dL but continued until ferritin is brought down to safe range 25-75ng/mL. Phase three: patient may donate blood routinely as defined by attending physician for optimum quality of health or may have periodic therapeutic phlebotomy by doctor's order. Frequency of donation or therapeutic phlebotomy will depend upon patient's Personal Health Profile as observed by patient and attending physician: age, weight, response to treatment, symptoms, rate of iron unloading and general physical condition. At anytime during treatment you experieince symptoms of heart irregualriteis or severe abdominal pain or sysptoms of anemia, alert your physician immediately. Symptoms of anemia can often be misunderstood by a patient as reoccuring iron overload. Symptoms of anemia can include: fatigue, heart arrhythmia, headache, sensitivity to cold, shortness of breath, dizziness and restless legs syndrome. Again, if while treatment is in progress, you experience any of these sypmtoms, bring it to the attention of your physician. The recovery phase of treatment...
Recovery is a period of time when you have been adequately de-ironed and symptoms have diminished. Unfortunately, it is possible that not all symptoms will disappear. If excess iron has had enough time to damage critical organs, you may never restore these damaged organs to full function. Issues of this nature need to be discussed with the doctor to determine if additional treatment is appropriate. During the recovery phase, you must be attentive to any sign of repeat symptoms. So long as you remain symptom-free, the doctor will re-test your iron levels in three months. The initial three-month exam following recovery will provide your baseline. A baseline is the first set of numbers after a series of phlebotomies whereby a person's pattern of un-loading can be established. These numbers are very important to your doctor and to your health. From the baseline data the maintenance or treatment program for an individual will be established. Additional re-tests to discern baseline may have to be done; these will usually occur in three-month intervals. A person's length of recovery period, treatment and maintenance program is determined by how often that person must have a phlebotomy to keep iron levels in a normal range. Maintenance patients are those who have reached normal iron ranges and who can remain within those normal ranges by donating blood periodically. Most blood donation centers allow one donation every eight weeks. If you are a candidate for maintenance, then a periodic blood donation will suffice. If you are found to need treatment, needing more than one extraction in eight weeks, the attending physician will provide you with the necessary order for additional phlebotomies. Your gastroenterologist or hematologist may refer you back to your family physician for the maintenance phase of your therapy. Afterwards, you may resume a normal, happy healthy life with only a small adjustment to your schedule: a life-saving, blood donation every now and then. ******************************************************************
Myth #1
"Taking two vials of blood from the arm is the same as a phlebotomy." Incorrect! A true phlebotomy treatment involves removal of about 450cc of blood or a full bag.
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Myth #2
"Iron can be removed by several methods." Incorrect; health food store products which claim to remove heavy metals will not remove iron. Only two methods remove iron from the body: phlebotomy and Desferrioxamine which is a chelator used for those with conditions of #### anemia.
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