Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Good Evening,I am a 43yr old female with Native American background. My father and sister both had Thallesemia- severe anemia and low iron levels... had to do iron therapy- etc. I was checked and did not have anemia.
Fast forward to 2015. My colon suddenly stopped working- went Atonic. Went to specialist- traveled 8 hours for a week of hospital testing- and it was found that my colon basically didnt work anymore. After therapy and medications didnt work- in August 2016 I had a partial colectomy. My rectum/anus not working right- colon still not fully functioning... and kidney/bladder function not appropriate. After my surgery- I gained 50lbs almost overnight and COULD NOT lose any. No matter what I did. I continued having gastro issues... then started having arthritis type symptoms, brain fog, and horrible exhaustion. I mean waking up so tired after a full nights sleep that I was crying... (still am). Then, started losing my hair- my teeth... headaches... abdominal pain.... on and on. Started seeing specialist after specialist... they thought it was hashimotos... but only found small nodules on my thyroid- nothing to worry about... I finally ended up with a rheumatologist about the same time that horrible purpura started showing on my forearms. He ordered enough tests they took 18 vials of blood... he did allergy tests and tests for various arthritis- sonograms, etc. I have a lot of allergies- but more importantly my iron was HIGH. and so was my B12. BECAUSE I have malabsorption due to a gastric bypass many years ago- I NEVER have high levels of anything. But here it was- iron overload. He suggested I see my gastro- who did a new endoscopy and colonoscopy... found my colon is not pink- but brownish due to overuse of laxitives... havent had my followup with him yet- it is next week- but he did bloodwork that day and my iron level is not high anymore... ODDLY I stopped my B12 pills after it was high last time- and it has TRIPLED since then... I emailed him today to ask about new bloodwork before the followup- but I thought I would reach out to some EXPERTS- you guys- to maybe get some simple questions answered....
1. Do you have these types of symptoms with your hemo? hair loss, weight gain- tooth loss?
2. Could your iron levels drop after a significant amount of bloodwork? or are there times when it fluctuates between overloads?
3. Have you had gastro issues while dealing with this iron overload issue?
4. Have you had purpura with iron overload?
5 If fluctuations- how do you know when you are high?
Thank you for any help you can give me while I simply look for a diagnosis so I can move forward with treatment! THANKS!