Looking for advice..hemochromatosis

Thank you for your response, Justin. My husband is currently under the care of a hematologist and a neurologist - wondering whether he should instead be seeing a gastroenterologist? I welcome input from others who may have some guidance to offer. Thank you all.

Hello @joejan, welcome to Connect. I can understand why you would have questions about whether or not the hemochromatosis or dementia is what is causing memory issues or if your husband has dementia at all. If you don't mind sharing, have your providers collaborated on each diagnosis to determine which may be causing the memory issues. Did the provider who diagnosed hemochromatosis mention that it might be the primary cause of the memory issues? You may notice, I moved your discussion to the Digestive Health group as hemochromatosis is typically treated by the Gastroenterology and Hepatology division. I would also like to invite back a few members who previously discussed hemochromatosis, @savov, @ruettj.

Hello @joejan,

You may notice that I merged your initial discussion to this one as I thought it would be beneficial for you to meet other members who have experience with hemochromatosis.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

How is your husband doing, @joejan? Has he consulted with a gastroenterologist?

Hi @ianw,

You may also wish to view this discussion in the Digestive Health group:
"Looking for advice..hemochromatosis” https://connect.mayoclinic.org/discussion/looking-for-advice-i-am-37-years-old-for-the-last-two-years/

Hemochromatosis is an iron overload disorder in which a person absorbs too much iron from the food and drink they consume. Left untreated, it can damage various organs in the body. The skin takes on a bronze color. https://www.mayoclinic.org/diseases-conditions/hemochromatosis/symptoms-causes/syc-20351443

May I ask whether your iron levels have come down? Do you notice any symptoms associated with the high iron level?

@ianw. Also my brothers high iron wasn't hereditary but he lived on the coast and ate alot of fish and shrimp but in order to get rid of the high iron like I said Dr told him.to give blood everytime the blood bank was going in town. Good luck

Hi Kanaaz, i have been on a low iron diet for the past 6 - 7 weeks plus dropped vitamin c supplements out. My iron has dropped from 27 down to 7 - normal, Ferritin dropped from 865 to 720, liver function has improved by about 10% (still in concern level) cholesterol down from 4.5 to 4 and glucose from 5.4 to 3.4. There are still some high inflammation signals but all other blood tests came back clear. Need to revisit in a couple of months to see if liver function continues to improve or further tests to be done. The only thing i noticed with the high iron levels has been inability to lose weight despite diet and exercise but Dr thinks this cold be as a result of liver function. Have to see how it goes next test!
thanks
ian

Thanks @lioness - yep have cut out red meat completely for past 6 -8 weeks and iron level back to normal - ferretin is still high but dropping (865 to 720) so hoepfully will continue to drop it - apparently i produce and store the ferretin just don't use it!

Husband recently diagnosed with Hemochromatosis and was prescribed Jadenu in lieu of giving blood twice a week. Would welcome any experiences of others with this condition. Side effects of this med (generic for Exelon); Have you seen weight loss? Are you limiting red meat? Any other guidance/info would be very much appreciated. Thank you!

@joejan, I moved your discussion back with your other posts to the hemochromatosis discussion to keep them in one place. Although it is a for a different diagnosis, I'd like to invite @tavi who has discussed using this medication.

My 78-year old husband has just been diagnosed with hemochromatosis. He will see a hemotologist later this week, presumably to begin treatment. What can we expect in terms of diet and life-style changes? Can this condition be cure.