Effects of haemochromatosis on brain?

Thank you Joyce! 

The lack of information really is strange, isn't it? It's a bit of a relief though to know I'm not the only one feeling rather confused by it all. I hope you start to feel better and brighter very soon! 

Thank you Sylvia! I hope your husband picks up too. It might be worth him speaking to his dr regarding his depression. It is an awful thing, I was like your hubby, no motivation, which in turn makes you feel fatigued. Little appetite, loss of interest in life generally. I feel so much better being back on a regular dose of antidepressent. I've always stuck to the same one it's an old type trycyclic as I am very sensitive to all the other types especially ssri's like Prozac, citalopram etc. Best wishes to you both.

Wow Sheryl! 

Thank you SO MUCH for your reply. You have been incredibly helpful and given me so much to think about. 

It's so interesting that you mentioned B12 deficiency. I am very interested in nutrition and I actually begged my husband just recently to request that they test his B12 levels when he next has a blood test (to check his ferritin levels, scheduled for early April). I absolutely believe good nutrition/vitamin levels are essential to good health. I showed him your message and as a result he is going to ask them to check his vitamin D and testosterone also. I have expressed concern previously about his vitamin D as he's a night worker - he's usually sleeping all day so misses most of the sunlight, and of course it's even worse in Winter. He has no idea about his thyroid - he will ask his consultant about this.

What you said: "went into the workshop he just sat staring at his feet and I would have to keep checking on him. He would also stare at a blank tv screen inside." - REALLY hit a nerve with me. My husband is a smart, intelligent man who is bursting with clever ideas, but has hardly ever been able to get on with projects or realise dreams because of total lack of motivation. I always thought maybe he's not really bothered and simply just too laid-back for his own good - but of course now I know there's a lot more to it than that.

His doctor recently prescibed him a low dose of citalopram, but he hasn't started taking it yet. He has never taken anti-depressants before (neither have I) and we are very apprehensive. I would rather check all other possibilities first before he goes down the medicated route.

Although, if there is truly a chemical imbalance caused by iron absorption (and I do believe this is a possibility) then I suppose the only solution is to put everything in order with anti-depressants.

Thanks for the CoQ10/VitE recommendation and asprin tip. I will definitely keep this in mind if he starts struggling with venesections.

I wish you and your family all the very best!

As my husband's depression was caused by insufficient vit B12, and testosterone, he had a very severe physical reaction while at work after starting antidepressants.  It was lucky there was an ex ICU nurse /ex ambulance officer/ ex air rescue fellow with him who knew what to do to treat him.

His depression problem was not psychological, therefore an anti-depressant was the wrong medication.

Same as giving menopausal women anti-depressants instead of supplementing oestrogen and or progesterone, which is what they really need.

I live in the tropics and my vit D was very low, and had taken vit D tablets for years.  As I said, some of us just don't absorb it.  A practitioner's brand vit D3 forte drops showed an immediate increase in my blood test.

 

What a good idea.  Then we have to get the drs to play the game.  Most don't even want to accept information brochures to hand out to patients.  Perhaps we could get our HH associations to make up a questionnaire which we complete and give to our drs.

 

That's a great idea. 

I just can't for the life of me understand why the medical profession (other than the HH researchers mentioned by Sheryl above) can't accept the possibility of neurological dysfunction actually caused by iron overload - as I understand it, it's the third thing most likely to absorb iron after bones and liver, so it stands to reason that some kind of damage could be done...

Much, much more research is needed in HH I think. The people who understand it best are the sufferers... questionnaires would be a good start!  

Unfortunately, the problem with research of HH, is difficulty to get funding for it.  As there is no medication for HH, there are no big drug companies to go to.  There is no shortage of medical researchers wanting to do it.

You will find some research if you google "iron overload and the brain".

 

First, you can feel thankful that someone is taking notice of your symptoms and is investigating.

Your pins & needles and numbness could be from neuropathy which may or may not be caused by HH, and usually from what I have read is connected to a problem with your spine.  I developed neuropathy of the feet after many years of being de-ironed (maintenance vx every 3 months).  Symptoms like yours but also including extreme searing stabbing, burning pain in the soles of my feet whether I am walking or not.  The source has not been identified because no-one is bothering to look.  The medication for it eases it immediately which makes me happy because I have had too many procedures in the past for many problems from a 9 year delay in diagnosis of HH and very high level of ferritin and TS%.  Of course, my serum iron was in overload too.  While everything else was, my liver was not affected.

Your haematologist will genetically test you for HH and prescribe the appropriate treatment, as with the results of your ultra sound scan of the liver.

Your ferritin level is not at dangerous levels, so do not worry for now.  Save it for when you have a poor diagnosis.  Even then, it sounds like you are in good hands and early treatment will give good results.

 

Hi Sheryl, 

Thank you so much for your response to my post. I am feeling better already with the comments & advice I have received.

Hi caio,

With a TS% of 65, it is a prominent marker for Haemochromatosis.  Your symptoms are classic HH (disclosure: also a lot of other things).  You have only had 1 going on 2 venesections.  You have a ways to go yet - give it a chance to work.  Generally depression goes, and given your youth (and you have not had the symptoms for long), no doubt the lethargy will go.  Have your hormones checked and monitored, and if necessary, have some testosterone injections if your level is low.  This will also decrease your fatigue, increase your strength and energy levels, thereby decreasing your depression.

After the 4 sessions, your dr will probably change your frequency.  Depending on what your gene test will be, e.g. if C282Y/C282Y, you will probably have to keep having phlebotomies forever but at maintenance frequencies.

Joint pain may not go away, besides, if you had past injuries from sport, that was likely to happen anyway.

You are very lucky you have been diagnosed early.  

 

Thank you very much Sheryl. Finding this threat and people who have experience with HH has been good to alleviate my concerns.

My family got a little scared as well because we had no Idea such thing existed. The symptoms were scary also, sexual disfunction, memory fog and severe lethargy could definetly mess with a youngs person mind who still used to think he could conquer the World.

I have some reasons to be optimistic, although the iron has probably been building up inside me for a number of years, Just a year ago I was on my physical Peak, I won some Brazilian jiu jitsu contests and I used to train heavily. My injuries have already been healed and apart from this sudden knee pain, which im pretty confident is gonna go away when my ferritin drops, I honestly believe I can be back to my former shape.

In fact, I wondered the past few days about how a person who has discovered iron overload within itself might actually improve its life quality once he/she is fully aware of the condition. So yes, I have every reason to believe that I can be better than ever, both physically and mentally, once i get my Iron down.

Over three months After the symptoms appeared and one month knowing about the iron overload, my head has been to a variety of places. Since I dont have 1/100 the experience you seem to have about living with HH, the only thing I can say is that the main problem or one of the main problems might be inside the head. HH people have the extra task of being optimistic all the time and need to fight depression.

Once my treatment is finished (2/4 venesections, no apparent improvement yet), I will happily share the results here. My ferritin went from 917 to 877 prior to venesections in 15 days, so i believe the level drop is gonna be considerable.

Sorry for the mistakes, im not english primarily speaker

Caio, there is a study of athletes (mostly bike riders) with HH, homozygous and heterozygous,  who were found to perform at the top of the range of their sport.

Try googling a sentence regarding this to find the research paper.  I think it was a team of French researchers, perhaps from Rennes.

Sometimes it does take a while (months) to get to <50, so you have to be patient.  A cold or infection/inflammation, will send your ferritin skywards, but don't worry, once the infection goes, your ferritin will reduce again.

Have your Vit B12 and Vit D levels checked.  These are very important and can cause health issues if deficient.  Some of us just don't absorb these vitamins from their normal source.  Vit B12 in the form of injections work best (perhaps every 3 months), and a practitioners brand of Vit D3 forte drops work more effectively than tablets.

Not only am I homozygous C282Y, my husband is homozygous H63D  (that is how I know about the male side of this), and our son is compound heterozygous C282Y/H63D.

Out of curiosity, are you from Brazil?  It has been found that there is a lot of haemochromatosis among Portuguese who also immigrate to Brazil and therefore this metabolic blood disorder (it is not a disease) has increased in Brazil.  There should be an association there, as the next head of the international haemochromatosis organisation is from Brazil.  So you should find a lot of support there.

Read up on medical research on haemochromatosis to get true information regarding haemochromatosis, as there are a lot of myths about haemochromatosis around.  The French at Rennes are currently doing the best and latest research.

Having haemochromatosis is a lot better than having other health disorders.  Treatment is a lot more simpler - no chemicals, chemo, etc.  The best thing is getting diagnosed early which you have been.

If I don't respond again for a while, it is because I am going overseas for more than a month and will be too busy enjoying myself to access this website.  

 

Yes, you have guessed right twice: I am a Brazilian and Indeed I have a cold right now.

I was surprised when I read everywhere about the scandinavian/Irish/celtic ancestry thing, which I most definetly am not (or at least as far as someone can really track down their ancestry). I am portuguese/italian descendant, but I already know HH can be present in any race/ethnicy. I also know that even if my genes test negative for the three most common mutations, it can still be HH. Like I said I will share the results here once get them in about a month.

The memory thing is what really been troubling me. All the symptoms suddently came out of nowhere and the memory issue got a little worse two weeks ago. I feel like I am a little drunk, my reflexes slowed down a little and just yesterday I had trouble following and episode of the twin peaks TV show. I just went to a french test and I feel I underperformed badly. In fact, I feel that I am only able to trully express myself in english because I am writing, if I had to speak I would have some trouble finding all the words quickly.

I used to drink before, not heavily but not lightly either. Im pretty sure I am not going to drink again, the fact that It could have damaged my brain scares and even enfuriates me. But seeing from another perspective, It could have helped me by speeding up the iron overload and making me take notice earlier.

The cold is probably taking my ferritin skyhigh and hopefully it is what has been messing up with head so badly the past few weeks. I had colds before but I never had anything like this in my head before. Do you people remember a specific time when your memory got worse and It never went back? Or you feel like It was progressing slowly? Does it come and goes? How is working after this? How is reading, watching a movie?

I read A LOT, my work demands very fast thinking, I thought I would study other languages for the rest of my life. So I dont have to mention the level of paranoia I have achieved from suddently having my joints, energy, mood, sexual desire and now even my brain all crippled at once. I know this is all treatable and even if It wasnt I would still not die from It, Im not finished with the de-ironing yet and all that, but I was really curious on how HH affects the brain in the long run. Many of you said your diagnostic was late but what is late in this case? You started to count when you got 18-21? Because even If one is diagnosed "early", in the mid-late twenties, the iron was probably acumulating and doing damage since the teens.

The other question I would like to ask is the food. I was also very fond of red meat, fish, chicken, beans and dark green vegetables, things that I plan tô eliminate or greatly reduce from now on. The doctor said I didnt have to have any diet restrictions apart from the alcohol, but this was the part where I trully didnt believe him. Have you changed your eating habits to what extend?

Finally, I would really like to thank you again, Sheryl. Finding people who has years of experience with something I just found out about myself and is willing to share this knowledge is nothing less than humankind-faith restoring. Have a great trip, HH people really deserve it.

Best Regards

I have to squeeze in a response.  The onset of iron loading for me was sudden.  I had to have a hysterectomy at a young age.  therefore no more loss of blood.  At the same time prior to this, I was donating blood anyway.  I was superwoman before then.  My gp kept ignoring the signs and symptoms for 9 years until my hips broke up from osteo-necrosis caused by my blood being so thick with iron particles which blocked the finer capillaries that fed the hip bones, so the bones died and broke up.

This was before google so I could not diagnose myself!!!!  She had run the ferritin levels and not told me that they were high, not that I would have know what they meant.

My symptoms were extreme fatigue, like staggering and slurring like I was drunk, by brain so fuzzy and foggy, my excellent sharp memory gone.  My work colleagues probably thought I was having a sip now and then.  I wanted to crawl under my desk and go to sleep, even the ground looked inviting.  I had whole body pain (bones and muscles) plus particularly all down one leg (the first hip which broke up).  I had left side chest pain like my heart was swollen and when someone finally checked my heart beat it was very fast.  My blood pressure is mostly low-good, but once it was discovered that it had spiked very high.

Now I don't want to dishearten you with my experience.  As I said I was in a very bad way suddenly and for a long time.  Was aware something was wrong within the first 6 weeks post surgery.  Yours has come on gradually.

When my heart was found to be beating so fast I was put on Metoprolol which made my brain go very foggy, my brain was not talking to my bladder, I could not say more than a couple of words, and I could not remember where I was going when I was driving to my doctor, plus I realised I could not understand traffic lights.  I think the Metoprolol dilated my blood vessels to my brain and allowed the iron into it.  The message is - don't let drs give you beta blockers.  But don't get scared by my experience as you are different.

I could not express myself verbally for a couple of years. I am currently learning French too.  All this brain exercise helps, so don't give up.  Mostly your problem regarding memory could be from fatigue and perhaps reduced testosterone and other hormones.

Eat as normal, but avoid Vitamin C supplements with meals, that includes juices that contain lots of fruit pieces.  Whole fruits are okay you would not eat 6 oranges in one go.  Vit C increases the uptake of iron.  Sugar foods also increase the uptake of iron.

Drink tea, coffee, milk with meals.  Consume calcium foods, say after dinner as a dessert, i.e. yoghurt, cheese, as calcium reduces the uptake of iron.

If you want to find out more about foods, look for "The Hemochromatosis Cookbook" published by the Iron Disorders Institute.  Try library first.  Very good information about why you can eat what.  Just don't eat red meat everyday, which you don't as you eat a good range of proteins.

Ireland has the highest prevalence of hemochromatosis but they are not celts (the only celts were in France).  Mostly the Iberians migrated to Ireland (i.e. Spain and Portugal).  It still seems to be a secret about this.  That is why there is so much hemochromatosis in Ireland, and Portugal and Spain.

To find out more about hemochrombtosis and the brain, google "iron overload and the brain".  I am attending a conference in August where they hope to get researchers talking about HH and the brain.  Iron does affect the hypothalamus and the pituitary gland, but it rarely goes further.  It can be seen in an MRI, but it can be from iron overload from perhaps alcoholism rather than HH.  I have had MRI's of the brain since because I had a deadly cancer in my parotid gland and the drs keep checking me for regrowth.  There was no sign of iron in my brain but this was years after that Metoprolol incident.

So, off to France I go to use my not so good French!!!!

Good luck, you will come through this.

 

PS:  Did I tell you that I found chewing sugar-free peppermint gum wakes up my brain when I have to concentrate?