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 am so sick of hearing "oh that's a common issue!" Yep it may be "common" but the never ending fatigue, joint pain, foggy brain, weakness still sucks even though it's "common" I'm 38 with 2 boys, I want nothing else but to sleep and rest but get constant crap from people. I'm 4 weekly phlebotomy treatments in and over it already. I feel like crap for 4-5 days after the 500cc draining; then get 2 days of semi normalcy before the needle goes in again. My numbers went from 1100 to 1400 in 10 weeks. I'm already on a low/no iron diet, trying every trick I know but still feel disheartened by the entire situation.
It will get better. I am not going to tell you it all goes away because it does not. I feel for you because it is painful, and it is tiring. I had that said to me as well. These people do not know what they are talking about. I felt like hitting the next person who gave me that comment. When I was told I had this, imagine and I don't know what your levels were. Mine were 2003. When you look this up it says when it is 1000 it is serious. imagine when you are double that. The Specialist telling you, you are in a life threatening situation. Your organs should all be rust. It has taken me 18 months to get my iron levels to normal range. 22 litres of blood taken. I just kept looking at when I had my blood taken it was reducing the iron and my life was less threatened. It almost gave me anxiety when a couple of times they did not take it because my blood pressure was high. I just wanted it taken. So remember on here we are here to empathise with you. We all know what it is like. Try not to let it get you down. Be glad they have picked this up early, because it could have had a fatal outcome. I know of someone who died from this, liver failure. She did not know she had it. The problem is that it has so many symptoms to other illnesses. You are so young to have such a high iron level. Good luck and try to stay positive. It will get better.