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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Gastrointestinal System
/ Hemochromatosis Support Group

Newly Diagnosed

Brucie
Brucie

phlobotomies we're going well for the last month from 1220 ferritin - 899 ferritin.  Started September 1.  Yesterday big spike to 1120.  Anyone have thoughts?

Cap6
Cap6
3rd draw yesterday. After the 1st week I went down and now this week I am back up again. Frustrating!
brucekingfield
brucekingfield
The phlebotomies remove iron and not ferritin. Most of us bounce around although it will come down. Often I had bigger drops following a plateau or spike.

You are still benefitting from the iron reduction, but ferritin can be made from the available iron and it's something of a lagging indicator of what's going on. So... don't get discouraged or impatient. It will happen. But get used to spikes every third or fourth time.
Brucie
Brucie
Thanks for the replies. Yesterday I went all the way back down to 810 from 1120. It will be good going forward to know there will be spikes and patience is key!
DD1
DD1
I have read that the ferritin may go up and down as it moves out of the tissues. You want to get it out of the tissues and the brain as soon as possible.
Brucie
Brucie
Thanks for the comments. After not being able to find a vein last week to get blood out, went back yesterday and more trouble finding a vein. Finally got it on the fourth try and pleased to see ferritin level all the way down to 672. Almost half of my original levels in August!
Brucie
Brucie
Just an update- Ferritin is all the way down to “normal” levels also changed up my diet and lost 25 lbs by mainly eliminating sugar. Feeling so much better, it’s amazing. Saw Doctor for final time last week and he feels 1-2 yearly blood donations should allow me to maintain iron/ferritin levels. Thanks to all for support.