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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WrCainy 07/01/2017

Hi peeps. Looking for some insight and info on others experiences. After a starting point of 1880 as a ferris level I had my first blood draw this week. They took 500cc. I'm scheduled for weekly. The draw went fine. I had the follow up blood work done at the lab to assess the effect of the draw.

My question is this:

I have experienced a drop of 300 ng on my ferritin level after only one draw. Is this abnormal or have others had a large drop lie this too? I was told to expect a reduction of 30 or so each draw. I do have high hemoglobin levels, therefore I'm wondering if that played a role?

Any insight or comments would be greatly appreciated.

Thanks David

brucekingfield 07/01/2017

My first draws had drops of as much as 800 points. Other times it rose. The process of attempting to regulate the sudden drops in iron can make the first several months a little crazy, but in the long run it always evens out.

Skinius_Maximus 08/11/2017

Hi David

My levels dropped slowly at first, around a 100 points per phleb on average. Lately they have been higher, around 200 points or higher per phleb. There have been times when my counts have risen, but the rises have been small.

S

BattlesBlades 08/24/2017

It goes up and down as you lose iron your body knows it's low of iron so it searches out the iron that has been deposited in all areas of the body. The body draws iron from organs and dumps it in your blood. You remove the blood, ect ect. This happens until the excess iron is removed from the body and you hit a plateau. When the iron removed and the iron in your body hit stable low predictable numbers, you can advance into a maintanance phase of the treatment. Increasing the time between plebs. I go once a year @ 500ml after about 2 years. Started @500ml every other week. Then monthly.

Cap6 10/25/2017

Thanks for those responses. I went down after the first draw then right back up. This now totally makes sense.

CuriousAbouttheScience 11/01/2017

Hi David, I had been looking for somebody else with a big drop in ferritin, but didn’t see your post before I did my own post, “Big drop in ferritin...”. Would you be willing to read and see if you have insights?

I have a couple of questions. How long after the first phlebotomy did you get the drop of 300 in ferritin? Did any docs explain it to you or seem concerned?

What has been going on with your ferritin since then? I see it went back up? When? What has the overall pattern been?

Thanks and hope it has been going well!

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