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The Iron Disorders Institute Guide to Hemochromatosis Paperback – November 1, 2009
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"Garrison (cofounder, Iron Disorders Institute) and a team of medical advisors present a layperson's overview of a common but under-diagnosed genetic disorder of iron metabolism. Following an explanation of why hemochromatosis has frequently been overlooked, they discuss the symptoms of iron overload, diagnostic tests, genetic testing, treatment and diet. Updated from the 2001 edition, the guide includes patients' stories, checklists for physicians and patients, resources, a glossary, and bibliography." - BOOK NEWS
About the Author
Cheryl Garrison was instrumental in her son's diagnosis and treatment for iron overload in 1997 and is now the founding director of the Iron Disorders Institute where she developed the institute's publications, including idInsight Magazine and the books Guide to Hemochromatosis, Guide to Anemia, and The Hemochromatosis Cookbook.
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I tested genetically positive for Hereditary Hemochromatosis, DX with low heart rate, blood pressure, course liver, enlarged spleen, arrhythmia, Central Sleep Apnea (mixed) in which my brain fails to consistently send my diaphragm the needed signal to contract so I will breathe. HH also causes gout due to impaired metabolism of uric acid until it is eliminated.
My treatment began in June. Untreated, odds of me living another two years are poor. With the organ damage already incurred, I might live another five years.
I haven't given up yet and am augmenting my weekly phlebotomy with adaptogens, numerous antioxidants, while avoiding many of the side-effect laden pharmaceuticals.
As for thyroid, I was doing well on T3 only with a weekly dose of cytomel for bone health. I have transitioned over the summer to 100 mcg of synthroid. In November, my throid panel will be tested for adequate conversion to Free T3. In April of 2012, my reverse T3 was 863. A month later without further meds, it was still 179 and dominant per the RT3 syndrome calculation. I felt lousy then and feel lousy today. I have another month to go.
I went backwards and forwards to doctors over 3 years, the nausea and tiredness was getting so hard to bear i would break down and cry and have to leave work in some cases. Finally one of the doctors said we will get some blood work done on you, my iron levels were high, come back in a few months time and we will see if they go down.
From there i got on the internet searching for an answer, getting sicker and sicker, i found hemochromatosis, further investigaions and searches via the internet i asked to see a specialist and asked to be tested for it along with a list of all my symtoms. His comment, you wont have that. He did test for it though after i pushed him to along with a whole list of other things, my test results came back positive for C282Y homozygote, thats the mutation on both chromosomes, he gave me a piece of paper and said here, go get bleed (i had to learn everything out myself, i nearly fainted and vomited after my first pint of blood, no warning given of what to do before or after). I got my sister to get tested also, she is C282Y carrier. It was too late for my dad who i am sure would have had it but i will never know, he died when he was 54 years old of a heart attack and his father also died around the same age of a heart attack. I am in the process of trying to get dads brothers and sisters tested for it too, but its hard, sometimes people (even family) dont want to know.
Since finding out over 2 years i have had 14 pints of blood taken to get my iron down to normal levels. My extreme fatigue has eased down to just getting tired every now and then (like any other person), i can do way more without getting too short of breath, the nausea has eased slightly but is still occuring every now and then and my haulicinations have nearly all but gone. If it wasnt for the internet i would have ended up like dad, a short quick life.
I have learnt so much form this book, its very hard living in a place where not much is known about a certain disease, but with knowledge you get stonger and can also help other people, maybe even save a few lives, wish i had of found out earlier, i may still have my dad with me instead of him leaving me when i was only 18years old, i guess we will never know.