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.
Greetings. I am a 61 year old female who was just diagnosed with hemochromatosis today. I actually owe my diagnosis to my son. He was recently told he had this disease and his family was encouraged to be tested and yep, I've got it as well.
My question to this group is - will the phlebotomy treatments make me feel better? Or is this procedure just to lower my levels? I'm constantly exhausted, have terrible insomnia, digestive issues, and knees and back hurt. I'm also wondering if I can blame hemochromatosis on my weight gain?
I wasn't crazy about the hematologist I saw today as he basically just told me that I had hemochromatosis and he ordered blood draws. He actually told me that "hemochromatosis is a boring disease for doctors". When I asked if this would make me feel better he said "we'll see". I'm sure I will be hematologist shopping in the near future!
Thanks in advance for support and help as I find my way towards a better understanding of this disease and a healthier me!
For some,, they feel amazing after their phleb. Depending on how high hot levels are, you may need a few before you get feeling the benefits. Personally, I felt drained after the phleb but I felt more energized the next day. I hope you can find a hemotologist who will work better with you on this. There is a good amount of information on the Web about hemochromatosis as well.
Good luck! :)
In reading on the internet, like with many conditions, you can end up confused. The process of deironing sounds simple and it is functionally, but physiologically, you have a lot of "dust in the air." So, I think what your doctor is meaning, you have only one option...deironing as it is 100% effective, wait for the dust to settle and assess where you are.
My experience during deironing was initially a series of good days, and bad days, with no predictable pattern. Though in retrospect, I know I indulged in sweets more often as I gave up alcohol, red meat and salty foods. I know now that processed sugar was the worst thing for me (it's an unkind food to give your liver and pancreas if they are antagonized by iron deposits). I now go with sugarless sweets, fruits and berries and it makes so much of a difference. I gave in to food pushers at Christmas and it was almost crippling. Definitely try eliminating foods that will make you feel bad. These are mainly salt, sugar and animal fats. I switched to a diabetic diet for now, even though I was spared that diagnosis so far, and I noticed more of a difference from that than from the phlebotomies.
For the first year I had regular phlebs (often called venesections in the UK) I felt drained for the first couple of days but I think this was because I found them to be so painful. On the third day I would feel brilliant. Luckily my ferritin levels reduced incrementally over the year so I gradually became quite well in comparison to how I had been feeling.
During this year lots of symptoms which I now know were associated with HH disappeared. A lot of joint pain and numbness and tingling stopped and my ALT levels went down to normal. Unfortunately I was left with permanent damage in my hips and feet which can't be reversed. I do physio exercised to manage this as best I can.
In the second year I was having them less frequently as my haematologist was trying to find the right maintenance regime and the pattern changed. I no longer had the elated feeling on the third day - it felt as though I was incredibly well, like when I was younger.
I have just begun my third year after diagnosis and starting treatment and apart from finding the phlebs painful I would say things are much more even for me.
I hope the treatment works for you - it should as it will reduce your ferritin levels and your transferrin saturation and elevated levels of both are very bad for anyone.
Christine