[ Post a Response | Hemochromatosis ]
Posted by Bill F People have a wide range of experiences with the “aggressive deironing” stage. Sometimes it goes smoothly, but some people experience fatigue and some people have difficulty giving blood at all. It is a very individual experience, but your young age (trust me, you are) should work in your favor. How long the aggressive deironing stage lasts is also quite variable. It depends on how much excess iron you have accumulated. Each phlebotomy removes about 1/5 to ¼ gram of iron so. Your physicians will probably estimate how many phlebotomies will be needed to remove the excess. Usually organ damage from HH does not occur until ferritin levels exceed 1,000. So you seem to have been diagnosed in a pretty timely manner. Many HH patients don’t get diagnosed until their ferretin is in the 2500- 3000 range or higher. Study up on the CHS website. Does anyone have any specific advice to offer Martina regarding HH and IBS/diabetes and/or hypothyroidism?
on 9/2/2005, 9:00 am, in reply to "Re: just got diagonsed"
207.172.151.177
Martina: Types 1 and 2 diabetes can be associated with (perhaps result from) hereditary hemochromatosis (HH). With your history it will be critical that you hook up with a knowledgeable specialist(s). Normal ferritin for a woman is in the 12-160 range. So your physician will probably prescribe a regimen of frequent (every couple of weeks or so) phlebotomies (giving a unit of blood) in order to eliminate the excess iron your body has stored up over your lifetime. Once the levels are down to the normal range you will probably be advised to have a phlebotomy every 2-4 months to keep iron from re-accumulating. That said, I have no idea how hypothyroidism may affect your treatment, so please see a good specialist.
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