Effects of haemochromatosis on brain?

Allergies, blood and immune system
1

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!

2

Hi Sylvia

It is documented that hh can cause depression, but as you say is it the effects of being unwell or is it because the brain is loaded with iron. I have suffered with depression and irritability for at least 10 years and was only diagnosed last year. I take an antidepressent Dosulepin at a low dose of 50mg and am starting to pick up now with fortnightly vs.

3

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! 

4

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.

5

Hi Sylvia

I am C282Y/C282Y, my husband H63D/H63D, and son C282Y/H63D, diagnosed after 9 years of hellish symptoms after a hysterectomy (me, anyway).  I have been living with it for 27 years and have spent a lot of time trying to find answers such as yours, because a lot of my symptoms never went away after de-ironing.

I just had a blank trying to remember my HFE genes - this happens a lot with my memory since HH.  I had super memory before this.

Any depression I had was related to not getting a diagnosis until my hips broke up because of avascular necrosis caused by HH, and the resulting inabilities and pain since because of a botched surgery.  But I am constantly fighting fatigue and lack of motivation.

However, my husband ended up with Hodgkin's Lymphoma, not proven to be caused by HH, and severe long term depression.  He reacted badly to anti-depressants.  Finally his dr thought of Vit B12 and my husband was very deficient in vit B12 to the point of causing neurological problems.  I was already giving him tablets but some people cannot absorbe B12 by tablets.  Weekly injections, (now 3 monthly) made a huge difference, he came home humming and said hello to the neighbour for the first time in years, and started tackling projects in his workshop.  Whereas before if he 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.

Vit D is also very important.  Some of us just cannot absorb vit D by tablets, but the practitioners brand Vit D3 drops forte work immediately.

Eliminate sugars and starches from diet.  I have found this helps immensely.  Apart from reducing fatty liver which is caused by sugars and starches (not fat), it also decreases chances of diabetes, both of which we are prone to.

As I have attended a couple of HH conferences, I have spoken in person to a number of prominent HH researchers from around the world.  One in particular researches how it affects the brain.  It is medically known that iron can get into the brain, as evidenced by MRIs and autopsies, however, the researcher says they have not been able to replicate it yet (in mice).  Therefore, the everyday gp will not accept that iron can be absorbed by the brain.

However, it is known that the hypothalamus tests our blood, and under the hypothalamus is the pituitary gland which controls our hormones which are also affected by HH.  Which reminds me, have his testosterone checked, as reduced testosterone causes fatigue, weakness, depression, memory, and probably more.  HH is a hormone thief.  My husband had to have his testosterone increased and now has an injection every 3 months.

A quick referral to hypothalamus functions:

Body temperature

Thirst

Appetite and weight control

Emotions

Sleep cycles

Sex drive

Childbirth

Blood pressure and heart rate

Production of digestive juices

Balancing bodily fluids

I have real problems with body temperature.  I am often sweating when it is cold, and shivering when it is hot.  My internal body temp cannot stabilise itself.

There is a Prof Creitchley/Chrichley?? in a Belgium university hospital (he is from Scotland) who researches iron absorption in the brain and has proven that iron crosses the blood brain barrier but I will have to spend time searching for his correct name, as there is also a person with similar name who researches kidney and HH.  HIs book is terribly expensive even on Amazon, but you can read extracts.

I ended up with a microadenoma on my pituitary gland which upset my hormones terribly even though I was using HRT and it was not diagnosed for 6 years.

So in the first instance, get him to have his Vit B12, Vit D, and testosterone checked.  Actually a full check of all his pituitary gland hormones would be helpful.  I am sure the dr already checks his thyroid, but make sure of this.  Ask for copies of all blood tests to keep, so you can keep an eye on it all yourselves.  A good CoQ10 (practitioners brand) and vit E is said to be good for those with HH.

After a few years of vx, they started having problems getting my thick blood out, so I started taking 100mg aspirin daily.  Huge difference.  I also felt like the aspirin started clearing out clogged up cells which caused heaviness and muscle pain.  (Layman's language).  Reducing this heaviness, now helps me get through the day, although I am done by 7pm if not earlier.

I hope you find a solution that helps.

 

6

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!

7

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.

 

8

Hi I've not long been diagnosed with both c282y genes

I've suffered with severe anxiety & stress for a lot of years

I've always put it down to my life at the time

But seems all my symptoms I've had for many years now are linked to me having HH

I've addressed my symptoms to my GP & specialist

Though they say there's no evidence they are all linked

Ive explained it was only through this forum that I've discovered they actually are & advised them to read all of HH sufferers symptoms

I've suggested that they start giving us suffers a questionnaire to fill in so they can then link all their patients symptoms & hopefully help them research it better to help treat each patient with the right treatment for each symptom

My fiancé has Alpha 1 Antitrysin disorder phz

His clinic hands out questionnaires frequently

As his is a rare illness it helps them research it a lot more & further

This has helped him a lot

I do think it would be a good idea if we were given the option also

9

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.

 

10

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!  

11

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".

 

12

Hi there;

I’ve bern feeling ill for a long time. It’s only when I went to the GP with a list of my symptoms (1 of which was pins & needles & numbness in hands & feet) that he gave me a blood test. My serum Ferritin came back at 628 & serum ALT at 55. 

More blood tests were done & some came back high: serum iron 49.1 , saturation iron binding capacity 69 (said its consistent with iron overload), serum ALT 39 , serum copper level 24 , serum total cholesterol level 5.4 & serum Ferritin 522 (slightly lower than 1st test).

I have been referred for MRI of my brain & full spinal cord, Ultra sound scan of my liver & also referred to an haematologist. 

DO I NEED TO BE WORRIED?

13

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.

 

14

Hi Sheryl, 

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

15

Hi, I have recently been diagnosed with HH and my ferretin level is 1560 and TS >95% I feel that I can't think clearly at all and wouldn't be surprised if it has done some damage to the brain. It wasn't great beforehand can't afford to lose any more cells. I have recently been having problems with rosacea and wondered if they were linked at all.

16

Hello everyone.

My case is probably not severe but it is driving me insane regardless. My ferritin level is 877 and TS 65%. As a 29 year old man and former athlete who stopped training about a year ago due to injuries, I have been a little worried about the amount of symptoms that popped out three months ago: depression, severe lethargy and sexual disfunction, memory fog and joint pain on my right knee. I didnt have any of these three months ago and each one of them worries me and messes with my Head as I read many and many statements of people whose symptoms doesnt really go away. Ive been to my first phlebotomy last week and now im going to the second. The doctor gave me four sessions and seemed very relaxed about my condition and symptoms. I havent had my genes tested yet but hopefully it isnt HH.

Do I need to worry because of these symptoms ? How much will de-ironing help? Will the symptoms ever be totally cured? How is the long term struggle against HH depression ?

17

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.  

 

18

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

19

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.  lol

 

20

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