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.

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run down

deleted_user
deleted_user
I have been getting phlebotomies every 2 weeks now since May of last year. I get so run down and feel horrible for 2-3 days after the treatment. I am exhusted, run down, very cold, no appetite. Is this normal?
On the other side, the pain that I have in the upper part of my abdomen does decrease once the run down symptoms start to fade. My hematologist had never heard of pain associated with this condition, which suprised me.
Is there something I can be doing to help with the feelings after my treatments?
deleted_user
deleted_user
I does seem to be commonly reported. I have been doing it every week for 5 weeks now, and I have felt fine. But I fear that the day may come that I'm run down. Some people say that taking a full complement of B-vitamins helps. I've been doing that, but I don't think I've been at this long enough to tell if it helps.

How much blood do they take for that two weeks? For me it is 500 mls a week.
GidgetD
GidgetD
You will not be able to keep from getting tired after a phleb but you can do a few things to help, of course drink and eat plenty before and after the phleb. Also try to get a good nights sleep the night before. What are your ferritin levels now? As you get closer to being de-ironed the fattigue should get better also. Are you a small person, maybe they should try to draw the blood a little slower, I know it matters to me how fast they draw the blood. I was phlebbed once a week for a year and it did get better towards the end.
Strype
Strype
The pain can be caused by 3 or 4 things. I have it too.


A) Liver is swollen
B) Spleen is enlarged
C) Pancreatitis
D) Colon/Large intestine

Now the last two I have not had any experience with- I only read about them.

My spleen was giving me fits due to the iron. My liver now does periodically, and it never started until I had the liver biopsy. Go figure.