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.
Hi all!
Just wanted to update everyone and post my recent lab numbers to see if this next phase of treatment is what most experience. I was diagnosed last year at 36. My primary complaint was a related disease called Porphyria Cutanea Tarda (PCT). My iron levels at that time were elevated, I was tested and diagnosed with HH, and began phlebotomies. My first phleb was in August 2009, my iron then was 156. Saturation 66%. Since then I have had 11 phlebotomies and, after last week's phleb, was told not to come back for another one until July. My doctor wants to see how fast Ioad iron. I received my most recent lab results and it has me a little concerned about being anemic. Here are my most recent numbers:
Ferritin 14
Iron 18 (with an L beside it - meaning "low")?
Transferrin Saturation 6 (also with an L beside - meaning "low")?
The normal range for Iron is 28 to 170. I recognize that my iron was no where near as high as most folks in this group, but phelbs were the only effective treatment for the awful PCT condition on my hands.
I have been feeling especially weak - has anyone else dealt with induced anemia for maintenance? How long does it take for the iron to creep back up and restore some balance? As always, thanks for any input.
Just wanted to update everyone and post my recent lab numbers to see if this next phase of treatment is what most experience. I was diagnosed last year at 36. My primary complaint was a related disease called Porphyria Cutanea Tarda (PCT). My iron levels at that time were elevated, I was tested and diagnosed with HH, and began phlebotomies. My first phleb was in August 2009, my iron then was 156. Saturation 66%. Since then I have had 11 phlebotomies and, after last week's phleb, was told not to come back for another one until July. My doctor wants to see how fast Ioad iron. I received my most recent lab results and it has me a little concerned about being anemic. Here are my most recent numbers:
Ferritin 14
Iron 18 (with an L beside it - meaning "low")?
Transferrin Saturation 6 (also with an L beside - meaning "low")?
The normal range for Iron is 28 to 170. I recognize that my iron was no where near as high as most folks in this group, but phelbs were the only effective treatment for the awful PCT condition on my hands.
I have been feeling especially weak - has anyone else dealt with induced anemia for maintenance? How long does it take for the iron to creep back up and restore some balance? As always, thanks for any input.
My view is: what does he know, I know how I felt and getting my ferritin levels back around 25 helped me.
Question is, though, why are these levels so low? My answer is simple: I take a proton pump inhibitor (esomeprazole) once a day for my stomach and this effectively blocks iron up take. I then had some blood taken when it wasn't necessary and my levels plummeted. It has happened once before when the effect of PPIs on iron absorption were not then known c. 2000.
So, is there something you are taking that stops iron being absorbed?
Billmac, I don't know why my iron dropped so fast. I have drastically reduced red meat from my diet and I do drink a lot of sweet tea (being from the South, it is hard to resist!). I used to love steak, but several times (before I was diagnosed), I started having terrible stomach pains after I ate red meat. So I gave it up in part because of the HH, but also because I didn't like the way I felt after I ate it.