Effects of haemochromatosis on brain?
Posted , 9 users are following.
Hi everyone, first post...
My husband has hereditary haemochromatosis. He is 47 and was diagnosed a couple of years ago. Weekly phlebotomies brough his ferratin levels down (from just under 4000) to normal range, and there has been no apparent damage to liver etc. He suffers with total lethargy, lack of motivation and lately is really showing signs of struggling with depression. He has always lacked motivation (we've been together more than 12 years and was the same then) and, as frustrating as this has been, it does seem to make sense as it's probably a result of lifelong HH.
What I am really trying to understand is, what kind of effect does HH have on the brain? Depression, mood swings, irritability etc are all common symptoms of HH - but why? Does anyone know the effects of iron overload on the brain, ie does it upset the chemical balance, resulting in depression?
Or does the sheer tiredness/exhaustion caused by prolonged iron absorption throughout the body trigger a depressive state?
Can anyone can shed any light on this (or point me in the direction to information online - I can't seem to find anything!)
Many thanks!
1 like, 29 replies
caio93027 sylviapouncer
Posted
29 years of life and not for one second I thought I would face this kind of problem, specially this early. I always had many faults/defects but I was never really worried because I was super confident in my abilities, to do anything. It sucks, but It is what it is and we have to take it to the chin.
I read the most scary reports of HH people who entered a room and didnt remember what he/she was going to do there. My memory isnt as bad, I can drive, I can read, I can use my second language and do math, but It is taking extra effort. I feel like I am 60% of my mental capacity, but thats already enough to compromise work, social life and understanding of books, movies and jokes in general. Not being able to think clearly is very very hard to deal with, its even harder if its a lifetime struggle.
But thats enough of complaining. I kept writing about how I am feeling and my fears but I realized Im not on a psychologist chair so I erased it all. The depression is coming and going, yesterday was really bad at night and today I already feel a little better. The paranoia/depression is very hight right now its even funny.
The many tips I have gotten from you are gonna be pretty helpful. Whenever I feel bad/depressive or afraid of not acomplishing the things I wanted in the future, I have to remember of people who wave been through much worse with HH and dealt with It.
Besides, my cold hasnt been gone yet, my fingers are crossed in the hopes of It taking away the brain fog with It. But to my surprise the knee pain has been mostly gone for the past three days, so I plan to use the most powerful weapon I know to fight whatever bad comes to my mind (and body): exercises and endorphin.
I have many other questions regarding life with HH, the 20-25 days of waiting for the doctors appointement are just too much, but I am gonna try to let it go a little and just wait for the treatment to end.
Thanks for the encouragement.
Au revoir madame, bon voyage! Até mais, madame, boa viagem!
Ps: I am trying the peppermint gun right now.
sheryl37154 caio93027
Posted
If you are found to be homozygous, your parents must have at least one hemochrombtosis gene. Have either of them or other relatives been diagnosed, or have symptoms of haemochromatosis?
caio93027 sheryl37154
Posted
Father (62), mother (59), older brother (32) and sister (31). Also have a total of six uncles and ants (all from 45 to 60 yrs old) and many cousins, not a single one has ever had one of these issues/symptoms. One of my grandmothers has diabetes and the other has Alzheimer, but they are both over 80 and only got their diseases recently. Of course a situation like this raises awareness and everybody said they are gonna have their ferritin checked.
The genetic tests are gonna say the final word, but I suspect something else might be going on. Here in Brazil we had a yellow fever vaccine campaign some months ago, some people were suspicious about it because It was a weakened form of the virus and it was said It could damage the liver. One week after the shot I went to a trip with some Friends in which I did drink a little, and right after this trip my heavy fatigue suddently started.
I had my liver MRI'ed after the symptoms and the hepatologist said It was 100% fine and the he sent me to the hematologist.
Of course this is all suspicious, it may be the reason that caused the HH to speed up. But as I have been endlessly reading about HH, TS 65% is almost all it takes to diagnose the disorder.
As soon as I have my genes tested and my phlebotomys done, I am gonna go back to the doctor and I am gonna swarm him with questions. I already plant to have a second and a third opinion anyway.
As far as my head goes, its bad right now and I know it. Its just that, I've always put too much faith in my future, like Ive always been preparing to have the 30s as the best time in my life. And to have all that suddently was definetly a shock. But like all other people who has had HH or even worst conditions, theres no other choice rather than accept It, fight It, adapt your lifestile and move on. Maybe its just the acceptance phase that I am going through, I was almost Superman less than a year ago and just when I was about to become one again, I got this. Its just too soon, my head needs time to heal I think. Everyone with disorders such this must have gone through hard times like these, and most went through.
I need to stop thinking about this all the time anyway because the excess of coffee and milk and worries are already starting a gastritis I can feel it.
The reports of people with HH who tried to exercises after de-ironing are not so encouraging, as always. But I will push it and I know I havent lost it all.
And the one question I always wanted to ask here but kept forgetting is: do you people ever drink after de-ironing? Do you do It ocasionally or have you completely erased all alcohol from your life? Doctor said I should take care of myself and I shouldnt exagerate, but that was about it and I feel I should have been more specific.
Anyway, thanks again for all the support. Some part of me just wants to get better, like 100% or even better than I was Last year, just to report for people here and to encourage HH people as well.
Best regards,
samantha06056 sylviapouncer
Posted
sheryl37154 samantha06056
Posted
Iron deposits in the brain probably cause some of the extrapyramidal symptoms but it is very rare. Iron deposits in the brain can be caused even in those who do not have haemochromatosis probably because they have not been having venesections.
During the 9 years I had severe symptoms and was undiagnosed, I was so fatigued I was slurring and staggering. That eventually dissipated with venesections.
Iron on the brain has been found to cause dementia too but once again it is in people who had venesections, so in a way, we are lucky. Carbergoline has been successful in chelating iron from the brain. I have seen MRI's which show iron deposits on the brain.
There is a Prof Chreichton (or similar spelling) in Belgium who researches the brain and iron overload. I know that spelling is wrong but I cannot remember how it was spelt because there are 2-3 ways to spell that name. One being the famed author, and another researches liver problems from iron overload.
sheryl37154
Posted
Iron on the brain has been found to cause dementia too but once again it is in people who have NOT had venesections, so in a way, we are lucky.
caio93027 sheryl37154
Posted
Well, things did went alright for me. With just 7 venesections I hit maintenance, I dropped from 917 to 56. Doctor told me he couldnt have predicted a better outcome.
All the symptoms were largely diminished once I did the first 4 VSs and my ferritin went under 300. But the biggest improvement came two weeks after the 7th VS. The brain fog was cleared, my knee and my wrist have almost completely healed and arent bothering me at all, my energy is like 80% of what It used to be, and the mood swings have also disappeared. Did MRI on heart, liver and hypothalamus, all clear from Iron.
It was a tought Ride. The regular venesections must make you bad before making you all good again, at least that how It was for me.
The only thing is left for me in order to get COMPLETELY RECOVERED os exercises. On the course of these months of bad depression, in which I pretty much just laid in bed for the majority of the day, I got a cervical herniated disk, which alone can make things pretty difficult for anyone. But lucky me again, it responded pretty well to physical theraphy and the MRI showed that It is almost returned to place.
I didnt get the results for the genetic tests I did just yesterday, but that doesnt really matter much. I think I did very well, but I was lucky like not so many people must be. I know I am going to have to adjust some things, this condition is very weird and its still with me forever, but I feel like I can finally go on with my life after those 4 hellish months. My GF left me in the middle of this tornado, but now Im honestly glad she did, after all, someone who cant hold on to you in your worst shape cant handle you at your best.
Thanks for all the advice, Sheryl. It was really helpful to me finding someone to give me advice in such a terrible time.
sheryl37154 caio93027
Posted
That's wonderful, caio. You certainly did respond quickly. Maybe because you had treatment while you were still young while most of us don't get diagnosed and treated till late.
I notice that people are getting diagnosed a lot earlier lately which means the doctors are becoming more aware.