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.
My ferritin was 3200 late last year. As of the end of July it was 109, and I've had 2 phlebs since then!
I have a bit more energy. My joints don't hurt as much. My brain is still cloudy. Labido is still shot. I can still feel my spleen and lever occasionally but not often.
Not bad for a life long needle phobe! I am now 30 and I consider myself EXTREMELY lucky.
To all of you who have just found out or those of you still trying to get that iron down, have faith. Mine would "slough" off in chunks every 4-6 weeks but would only drop 30 or so points in between.
Try going every 2 weeks for a phleb if you can. That's what I did. :-)
Now if I could just have everyone in the US checked...
I have a bit more energy. My joints don't hurt as much. My brain is still cloudy. Labido is still shot. I can still feel my spleen and lever occasionally but not often.
Not bad for a life long needle phobe! I am now 30 and I consider myself EXTREMELY lucky.
To all of you who have just found out or those of you still trying to get that iron down, have faith. Mine would "slough" off in chunks every 4-6 weeks but would only drop 30 or so points in between.
Try going every 2 weeks for a phleb if you can. That's what I did. :-)
Now if I could just have everyone in the US checked...
How did you get your ferritin so low in such a short period of time? I assume you started in phlebs in December. That's eight months of phlebs every two weeks so far. 3200 to 109 is phenomenal! Have you been eating?
Maybe the treatment for females is different. I started at 453 ferritin. I have been going every week for 10 weeks. I'm waiting to see if I am below 50. That's where the doctor wants to get my ferritin.
Are men different than women in treatment?
the reason is Periods... don't mean to be blunt but it's true, unless you have already gone through Menopause thats different .... but when a women has there period they expelle blood which helps with the IRON release
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I have been trying to lay of the soda but that's because my teeth are paying the price.
suehue,
I've no idea why it's coming off so quickly. It's certainly not my terrible diet. The phlebotomist did say that when she first started bleeding me my blood was so thick that it was hard to drain. Her sister died from complications with HH.
Maybe going every 2 weeks gives the blood enough time to filter? Maybe I'm just lucky?