Friends & family members,
You are being given this letter because someone cares about you & wants you to know about a disease that could kill you. Hereditary Hemochromatosis [HH] is a genetic condition of iron overload, which if left undiagnosed &/or untreated, can be fatal. On the other hand, with an early diagnosis & proper treatment, you can live a normal lifespan. It is very important to be screened for this condition, if you have any of the symptoms/conditions associated with HH, OR if you have a family member already diagnosed with HH, OR if you are a descendent of any of the most commonly affected lines, such as those with ancestors from Ireland, Scotland, Britain, or England.
Although years ago, it was known only as a "middle aged male disease," we now know that HH can affect children & women too. It most usually presents with vague symptoms many years before it is diagnosed. Sadly enough, even though it is now known to be one of the most common genetic conditions in the U.S., it sometimes is still not diagnosed until autopsy. Statistics show that the prevalence of HH, in the U.S., is about 1:8 for carrier status and 1:200-300 for actually having full-blown HH. In countries, such as Ireland, the risks are even greater, at 1:4 and 1:100.
Symptoms and/or problems, which may be associated with HH, are:
· Chronic Fatigue/Fibromyalgia/weakness [Most patients diagnosed with CFS or FM, have never had their iron levels checked, yet this is one of the most common symptoms associated with HH.]
· Diabetes [It is estimated that 10% of all diabetics have excess iron affecting the pancreas. Often, once a diabetic HH patient is deironed, the diabetes is easier to manage.]
· Cardiac problems, such as arrhythmias, cardiomegaly, heart failure, family history of heart attacks.
· Arthritis/tender, swollen joints – Many HH patients complain of joint pain, especially of the knuckles, knees & hips. These patients are often diagnosed with rheumatoid arthritis & many have replacement surgery without ever having been tested for excess iron.
· Impotence, decreased libido, infertility, amenorrhea, and/or early menopause - One of the most unrecognized causes for these problems, is excess iron.
· Cirrhosis/Cancer of the Liver and/or pancreas, elevated liver enzymes - Iron can cause cirrhosis of the liver & many HH patients are often accused of alcoholism, even if they have never drank.
· Psychological disorders, such as depression, mental confusion, memory loss.
· Abdominal pain or swelling, especially on the right side, IBS.
· Frequent colds/flues/infections/weakened immune system.
· Cancer - Cancer thrives on iron, so know your iron levels before ever taking iron supplements
· Skin changes, rashes, PCT, tanned, rusty or gray coloring
· Neurological changes, studies are now showing that iron in the brain may be associated with seizure activity, Alzheimer’s, & Parkinson’s diseases.
The excess iron can cause a “domino” effect, due to the iron damaging one organ or gland, which then causes subsequent problems with other organs or parts of the body. It is imperative to diagnose HH early, before permanent organ damage is done & thereby decreasing the chances of irreversible damage. Eventually, if left untreated, excess iron will affect he entire body, resulting in premature death and/or permanent disabilities. Remember: Symptoms or not, iron overload MUST be treated.
Screening & prevention are the keys to the getting an early diagnosis & to prevent the permanent damage that may occur from HH. One method for screening the "at risk" population is through genetic testing. The mutations for HH were identified in 1996 & an in-home cheekbrush testkit is now available through many labs in our country. The cost of $110.00 to $130.00 for the testkit is well worth the knowledge of whether you or your family members are at an increased risk for overloading iron. No doctor order is necessary for these tests & it is covered by many insurance plans. Two labs which are recommended for genetic testing for HH are:
Kimball Genetics Denver, Colorado 1-800-320-1807 In Denver: 303-320-1807 http://www.kimballgenetics.com/tests-hemochrom.html
Michigan State University [MSU] Lansing, Michigan, http://www.phd.msu.edu/hh/hh/html Call toll free: (877) TEST-DNA (877 837-8362)
While genetic testing will help identify your genetic risks for HH, it is important to also know your clinical status. This can be achieved by the following iron profile: Serum Iron, Serum Ferritin, Total Iron Binding Capacity [TIBC] & Transferrin Saturation. If you are at risk for HH by meeting one of the above criteria, it is imperative to have both the clinical & genetic testing done, to get a complete picture of your status. Many people are carriers, without symptoms, who unknowingly pass the genes onto their children. Therefore, only doing the clinical iron profile will not help in this case. The genetic testing should be done to help you to understand the risk for your children & whether they also need to be tested.
Be sure to ask for all four of the iron tests & they should be done after an overnight fast. Do not base your iron levels on a hemoglobin level. It is possible to be anemic, with a low hemoglobin level, and still have iron overload. ALL anemias should be evaluated for the cause of the anemia, before treatment ensues. One must not assume that the anemia is caused by iron deficiency, without first running a complete iron profile. Iron supplements are too frequently prescribed by doctors, or taken by patients, due to symptoms of fatigue or anemia, without ever assessing an iron level. Do NOT take iron pills without first knowing your iron levels! It is important to “know your numbers” & to obtain copies of all lab/test results, and keep a medical file for your own reference. Many patients report being told that their levels are “normal,” when indeed they are not. A result of ferritin >150 &/or TS >45% is suspicious for HH and requires further evaluation.
Once diagnosed with HH, it is important to get appropriate treatment, which consists of therapeutic phlebotomies [bloodletting/removal of a pint of blood] on a weekly or twice weekly basis, as tolerated, until iron storage is depleted. I recommend the guidelines set forth in the Annals of Internal Medicine, Dec. 1998, which can be found on my website or obtained, by emailing me. Basically, their criteria calls for weekly phlebotomies until the hemoglobin level drops below 12 & does not rebound, and the ferritin is <20. Once the initial “deironing” is completed, it is very important to maintain a ferritin of <50 by periodic phlebotomies for the rest of your life. It is also important to remember that treatment must be individualized to meet the physical demands of each person & in consideration of any other existing health problems. Many symptoms and/or problems are improved after the excess iron is removed & medicines may need to be adjusted accordingly.
Dietary considerations for those diagnosed with HH: The enrichment of food products results in many cereals and foods containing up to 100% of the RDA for iron, in ONE serving! Read your labels & know your iron intake! Reduce red meat consumption & avoid eating organ meats. Do not smoke or drink alcohol, as this increases absorption of iron. Vit. C also increases absorption of iron & should be taken only in moderation & at least 2 hours, before, or after any meals. Do not take any iron supplements or vitamins containing iron, unless it has been shown that you are truly iron deficient! Drinking teas with your meals will help inhibit iron absorption. Warning: The infection from bacteria, called Vibrio vulnificus, can make you very sick & may even be fatal, to those with iron overload. These bacteria can be found in seawater or by handling or eating raw seafood. Do NOT eat raw oysters if you have HH!
For further information or for literature to share with your doctor/family/friends, please contact one of these HH organizations:
For those with an interest in learning more about HH, or seeking support, or wanting to share your story about HH, there is a free online support group available. It is called Families HHhelping Families [FHHF] & more information can be obtained at: http://groups.yahoo.com/group/FHHF
Please let me know if I can be of any help to you.
Email: firstname.lastname@example.org or web page: www.munnfamily.net