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.
I have been diagnosed with HH and I'm establishing care with a Hemotologist next week.
My brother has HH and has alot of organ damage because of how long it took for them to diagnose him.
When I had a test in November:
Iron 135
UIBC 201
Iron Binding Capacity 336
Iron % Saturation 40%
Ferritin 308
I have been having some muscle weakness, just not feeling like myself, slight vision issues, etc. Are these normal symptoms for my level?
Your symptoms sound normal for raised levels but do not yet sound extreme - it is important they don't worsen. When iron builds up in the body and it is not treated it damages the body, as happened with your brother - hence the need for treatment to remove stored iron.
In the UK haematologists like to keep the serum ferritin levels below 50 so that damage does not occur. Your haematologist will be able to help you with this.
I hope you cope okay with your treatement.
Christine