About Me

sueshue

Female, 48, Married
VA, USA
Member since July 27

About Me

I am fairly new to this Hereditary Hemochromatosis thing diagnosed at 47, the eldest in the family. I have other symptoms like depression, thyroid disease and gallbladder disease which should have signaled HH. For many years I have seen many GP's and specialists but not one recognized the obvious succession of seemingly unrelated symptoms as possible precursors to HH. In early February, I saw my GP and asked her if my symptoms were related to the thyroid and maybe something was off. All my thyroid tests came back normal. The nurse scheduled me a June appointment which seemed an eternity since I felt about 80 years old. This would be my fourth endocrinologist in 8 years, not one ever seemed to think outside the box. I would get the same tests and they would tell me that I had didn’t have diabetes. I needed an appointment sooner than June or I wouldn’t be able to move like the Tin man. My fatigue, sore muscles and joints prompted me to consider visiting a holistic rheumatoid arthritis specialist, who did not accept my insurance. I filled out a 3 page questionnaire of symptoms prior to the office visit. During that fateful visit in late February, the doctor listened and reviewed my questionnaire. He asked clarifying questions and checked boxes on a checklist for each body system. He did not test me for everything on the lab request but he did check off tests that I had never had before. I paid $250.00 dollars cash for 1 1/2 hrs for the holistic doctor to listen to me because the insurance doctors wouldn’t. The insurance paid $500.00 for my expensive, extensive and thorough test panels. My iron and ferritin levels were high, the thyroid, complete blood and liver panels were normal, and the vitamin D levels were low. Armed with knowledge and some definitive test results, my GP put me on 12 weeks of vitamin D supplementation in mid-March. Sadly, she did not seem concerned about the high iron/ferritin levels and did not refer me to any specialist for that condition. My insurance plan is open access so I can seek the specialists I need except for holistic doctors. I had to find someone close to handle the case of the curiously high ferritin at 378 level. I chose a Hematologist/Oncologist to handle my iron issues. By the end of April 09, my ferritin levels were at 453 ferritin w/normal liver function tests, and started phlebotomy treatments by mid June 09. My 12 weekly phlebotomies yielded a 65 ferritin w/normal liver function and TSAT tests by the second week in September 09. I limited my diet to mostly non-heme foods with one heme food like an egg, chicken, turkey or fish a day not exceeding 4-6 ounces total and concentrated on whole-grains, no sugar, and sources of vitamin C like vegetables and fruits. I drank iced tea, hot tea or coffee with my meals. I allowed myself 4 ounces of one "red" heme meat, the day after a phlebotomy with a glass of calcium-fortified skim milk chaser.

I am fairly new to this Hereditary Hemochromatosis thing diagnosed at 47, the eldest in the family. I have other symptoms like depression, thyroid disease and gallbladder disease which should have signaled HH. For many years I have seen many GP's and specialists but not one recognized the obvious succession of seemingly unrelated symptoms as possible precursors to HH. In early February, I saw my GP and asked her if my symptoms were related to the thyroid and maybe something was off. All my thyroid
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Right now walking and gardening. Feeling better every day. Was given a digital camera for my birthday, hope to learning how to use it by enrolling in an intoductory photography course at the Comm.college. My first camera was a thrift store Brownie (The kind you look into the top viewfinder.) In the Red Hatter Society but a Pink Hatter. Bible Study Volunteer in a Reading Room at DSS.

Right now walking and gardening. Feeling better every day. Was given a digital camera for my birthday,

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