Hemochromatosis Support Group

Hello,

My father passed away from Hemochromotosis in 1985. My brother and I were tested and have both genes. My iron levels are okay and I go for yearly check up. My brother's ferritin is currently 1630. And he has been acting very disorientated, confused. He repeats a lot and other strange behavior. I am wondering if anyone else has every experiences this with HH or knows if this is common. He has an appt for 7/26. I hoping he will start phlebotomies and things will get better.

Thanks, J

Hi and welcome, i have never witnessed this, but i have read on one of the websites that this can happen, not sure which one now, i think "The Iron Institute" but i will check again,

His Ferretin IS very high isnt it?so maybe its that which causes the way he is behaving,

It sounds as if he has only just been diagnosed if he hasnt had any phlebotomies yet, when he next sees his doctor he could ask about it,and i am sure when he starts them he will improve

If you look at websites about HH i am sure you will find ome information there

Micheal, Welcome to the group.

His ferrtin IS VERY high. My ferritn level was never that high. But I can say that when my levels are elevated that I am more easily confused and that my short term memory is awful. The symptom page for The Iron Disorders Institute is:

http://www.irondisorders.org/symptoms/

Mental confusion is not listed but dizziness and fatigue are and my Hematologist believes that these are the two factors that effect my metal confusion.

It stands to reason that if iron builds up in the organs of the body that some would build up in the brain too. So little is know about the brain and the effects this disease can have on it.

I hope your brother can start phlebotomy soon and that he sees an improvement.

We will be here to answer any question that you have as best we can and to give any support. I am so sorry that this disease caused your fathers death and that you know have to witness your brother suffer too. And I am glad that you are being closely monitored too.

Hello, we hope that this forum will provide info that is helpful, if not always good news. Your brother's doctor must be sure to do an array of liver function tests to rule out any possibility of hepatic encephalopathy. My original ferritin was nearly 4000, but my doctor at the time was not aware that iron overload could damage the liver. Best to you both.

At 58 i had ferritin of 2580 and saturation of 98% .I too have cirrhosis and my liver enzymes were elevated at the time but within a year they had gradually come down to normal and have been fine since.I also have dizziness and poor memory and slight confusion at times along with tireedness but they have reduced a little over time.I have pain in a lot of my joints and in the last few months my shoulder joints have become quite sore and i just discovered this is also related to HH.Overall i feel a hell of a lot better than i was prior to 07.The best thing of all was finding out i had HH in the first place.Hope this helps other people.