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Story about HFE hereditary haemochromatosis .

A HFE hereditary haemochromatosis story

Apr 28, 2016


Adopted, had no medical information.  Hysterectomy in 2006.  Diagnosed in 2013 at age 44 after 10+ years of joint pain, fatigue, depression, IBS, GERD, gallbladder removal, brain fog and being called a hypochondriac by physicians.  I ended up in the ER with my third mono relapse.  Blood work revealed ferritin over 1500 (stopped registering at that point) and elevated liver enzymes.  Blessed to have a GI doc who ordered the HFE test right away.  One week later I had my diagnosis of homozygous c282y.  Eight weekly phlebotomies and levels under control.  Haven't had to have a phlebotomy since.  Completely quit drinking (used to drink 1-3 beers/day 5 days a week), red meat, cereals.  Now buy water, as I learned my well water was loaded with iron, which I had been drinking.  I take calcium with every iron-rich (chicken, turkey, fish) meal.  No organ damage to my knowledge.  Abdominal CT revealed a hemangioma (bruise) on my liver and a benign adrenal adenoma.  I do have osteoarthritis in my knees, hips, neck and lower back.  I get Euflexxa injections in both knees twice a year.  Echo indicates no heart damage, just a congenital murmur and slight mitral valve regurgitation.  

I miss an occasional juicy steak or really good burger, and I miss having a drink, but none of those things are as important to me as growing old and being a grandmother.  I feel truly blessed to have had the good fortune of coming across a competent physician when I did.  I pray that there are many more happy endings out there!

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