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,
I was just diagnosed with HH last week by my GI Dr who discovered it with a series of blood tests in the past few months. I have had extreme stomach pain for almost a year, an endoscopy that did not find anything except an ulcer, and have been increasingly fatiqued. My last iron test was in December and was lower than the month prior. I saw a hematologist for the first time today and she will test me again next month and then start phlebotomies if it goes up. Im feeling a little overwhelmed right now because of the fatique, headaches, stomach pain, and a bit of brain fog. Is that "normal" even though my numbers are not high? The Dr didn't seem too concerned about that today.
Any advice or input would be appreciated!
I was just diagnosed with HH last week by my GI Dr who discovered it with a series of blood tests in the past few months. I have had extreme stomach pain for almost a year, an endoscopy that did not find anything except an ulcer, and have been increasingly fatiqued. My last iron test was in December and was lower than the month prior. I saw a hematologist for the first time today and she will test me again next month and then start phlebotomies if it goes up. Im feeling a little overwhelmed right now because of the fatique, headaches, stomach pain, and a bit of brain fog. Is that "normal" even though my numbers are not high? The Dr didn't seem too concerned about that today.
Any advice or input would be appreciated!
I have HH (C282Y homozygous) and during the 2 or 3 years when my serum ferritin and transferrin saturation levels were rising I had stomach pains. Whenever I was advised to take iron tablets when I was younger I got stomach pains so I never kept taking them.
After several venesections my levels went down and the stomach pains have disappeared and have not returned.
If your ferritin and transferrin saturation levels are above average, you are diagnosed with HH and have several HH symptoms I do not understand why you are not starting treatment straight away.
When I was diagnosed the treatment started very quickly - my serum ferritin was 387 and my transferrin saturation was 89%, so my ferritin levels were not as high as some people on this forum at diagnosis. I suspect the transferrin saturation may have been the cause of my brain fog which started to lift even following my first venesection.
I hope you get the treatment that you need soon and have a reduction in your symptoms.
Christine
Take care
Steve