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.
Went into the doctors for some routine vitamins tests since i was feeling off and that didn't go great with working out.
My b12 came back low which was easily fixed but my iron came back quite high.
My doctors decided to check my iron saturation levels to be save and they came back abnormal at 67%.
I am male a big chuck of Irish ,,plus 44 for i getting referred to hematologist (have to wait 3 months for that).
Over the past two months i been feeling worse with almost daily diarrhea,sore joints and weird abdominal discomfort/pressure below my rib cage.
Not to mention i am exhausted a good chunk of the time.
Going to see the doc tom since doing this for another three months before i even get tested.
For once i like a blood test that just comes back normal .
Whats with the gas and my digestion sounds like a car with fuel pump issues.
My b12 came back low which was easily fixed but my iron came back quite high.
My doctors decided to check my iron saturation levels to be save and they came back abnormal at 67%.
I am male a big chuck of Irish ,,plus 44 for i getting referred to hematologist (have to wait 3 months for that).
Over the past two months i been feeling worse with almost daily diarrhea,sore joints and weird abdominal discomfort/pressure below my rib cage.
Not to mention i am exhausted a good chunk of the time.
Going to see the doc tom since doing this for another three months before i even get tested.
For once i like a blood test that just comes back normal .
Whats with the gas and my digestion sounds like a car with fuel pump issues.
my sat was 67% and ferretin only 300s but i am h63d which causes symptoms with lower ferretin... good luck and hang in there. if you are forced to wait, give blood a few times, you may feel better more quickly then you think... jason
My story is just about the same as yours, Irish & Scandinavian genes, had diarrhoea etc. Also had dry eye, brain fog, & seemed more likely to "snap" for minor reasons (all things that have been linked to HH). I was finally diagnosed with HH at age 44. Ferritin level 2300, Sat 97%. No wonder I was struggling to finish workouts in the years leading up to this! I thought it was just my age.
Is your stool pale? (I know know this is due to the bilirubin not being excreted from your body due to liver stress, now my levels are down poop is the right colour and all stomach issues have gone)
Your doctor can take your blood for a genetic test (or a mouth swab, but they may charge you more for that in some places). Also maybe ask him to refer you to a Gastroenterology rather than a hemo doctor as HH is really related more to your digestion than blood, you might be able to see one sooner.
My Ferritin is now under 100, after over a year of phlebs, and everything pretty much back to normal ...... except for a bit of joint pain in the mornings but fishoil, Glucosamine, chondroitin etc. (I must get some SuperCissus RX!) seem to manage that.
Something i should have done much sooner as it turns out i was bleeding internally for about the past two months.
Have diverticulitis and i am presently on two different antibiotics for it.
They don't know why i have it just yet and i am still waiting on test results.
It would seem my tolerance for pain is still quite high and i am still a moron when it comes to knowing when i should go to the hospital...lol..
Upside is i had a cat-scan to find this out and my parts still seem to be functioning correctly with the minor exception of my liver which still looks normal but has a minor elevated enzyme count which seems o be permanent but not anything to worry about..
I am stock with the iron until they figure out why its high but then i can deal with it.