Describing the symptoms of hemochromatosis can be tricky. As we have noted elsewhere: “Early signs and symptoms of hereditary hemochromatosis mimic those of many other common conditions, making it difficult to diagnose.” (Mayo Clinic)
Adding to the challenge is the fact that not everyone who has HHC exhibits every symptom of HHC. For example, the bronze skin discoloration that gave rise to one of the earliest terms used to describe this condition–bronze diabetes–may be present in as few as 25 percent of patients. But you should not be surprised to hear a doctor say, even now in 2010: “I doubt you have HHC; your skin looks fine to me.”
Likewise, many women are still hearing this: “I doubt you have HHC; it rarely affects women” or “It’s probably not HHC; that’s mainly a man’s disease.”
{ 2 comments… read them below or add one }
My brother (in London, UK) was told ‘you can’t possibly have HH, it’s too rare’, and laughed out of the surgery, despite the fact that he’d told the ‘doc’ his sister (me!) had it and both his nephews (my sons) are carriers. He was told he had a vit B12 deficiency and was given a course of vit B12 injections which, needless to say, helped not a jot. He has multiple symptoms and recently suffered a (fortunately minor) stroke.
Heyy
I’m 18 years old and female .. I know you should never self diagnose online and should always get a second opinion from a doctor .. But I’m worried that I may have this hemochromatosis :/ I recently had a weird coloured bit of skin on both my thumbs, I appear to be loosing my sex drive (much to my boyfriend’s disappointment), I have PCOS so my periods are already messed up, after eating I start feeling really sick and it’s making me not want to eat and finally I constantly have a dull headache behind my forehead, making my eyes feel heavy and making me kinda dizzy .. So yeh .. If you guys have any advise or information it would be appreciated greatly :/ xxxxxxx