Prior to my diagnosis I had multiple severe neurological symptoms which all but disappeared within a few months of treatment. Has anyone else had any issues with tics, severe anxiety, speech impediment, mania, or epilepsy that has been remarkably changed since treatment? My research found a handful of case studies published about such incidents, but I can find no decent discussion or research on the neurological issues hemochromatosis might cause.
Any imput would be welcomed.
HI Mark, All i know, and the main thing i noticed was my sleep is soo much better now. If your not getting the sleep sound sleep your body mind needs, it can cause a whole heap of troubles.
No, this was not sleep deprivation. Thanks!
I am so annoyed with myself. I typed a whole screed of stuff then went to another website and lost the lot. 2nd time in 24 hours.
I have been searching research for the effects of iron overload and the brain. I am reading Prof Robert Crichton, a Glaswegian at a Belgium uni (there are other Crichtons, or Creightons) as he has done work on breeching the blood-brain barrier which normally protects our brain from iron overload.
I want to find out what medications and circumstances breech the BBB so that we can tell drs, thanks but no thanks. This comes from my experience when given beta blockers for extreme arrythmia by a cardiologist. My brain went into immediate fog, I could not focus, think, concentrate, get more than two words out because the words became lost between my brain and my tongue, my brain stopped talking to my bladder, I could not remember where I was driving to (my dr), next trip - how to get there, and lost the ability to read and understand traffic lights. I stopped driving. It took years to get articulation back. I refused to continue to take the heart medication after a couple of months.
I had arrythmia because my haemotologist tried me on 4 monthly venesections instead of 3, I went into iron overload, and cardiologists don't know anything about HH. The beta blockers dilate the blood vessels, also to the brain, and let the iron in.
I was researching cerebella ataxia, one because an HH study mentioned it, and two, an uncle had died from it. And I came across the following case study which peaked my interest because the patient was given Carbergoline which is what I take because I ended up with a prolactinoma because of damage to the pit gland by HH. Another website said Carbergoline was a brain iron chelator but I think in this case, he was prescribed it to help reduce tremors.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2581907/
By submitting this, the post will be delayed a couple of days or more.
During the 9 years of leading up to diagnosis, I was staggering and slurring and was losing my once very good ability to remember details. This dissipated with venesections but came back with a vengence when prescribed the beta blockers.
When I told a research group who want to concentrate on HH complications other than liver, pancreas, arthritis, they proposed to try to replicate it with their lab mice. Of course they have to chase up funding.
There is not a lot of research out there on iron on the brain, but it is there. I have seen a photo of an mri showing iron deposits on the brain. There are still a lot of medical people who deny that HH affects the brain.
Every time I've tried to mention that I think maybe my anxiety troubles are exacerbated by my haemochromatosis, even the hematologists don't believe me. They cut me off and mention how there hasn't been any link between the two but based on the discussions I've had with people on this message board and based on my own experiences I know that they're wrong in saying that.
Just because I haven't been a case study and it hasn't been "proven" doesn't mean it doesn't occur. Everyone's body is different and you can never be certain how someone will react to something.
I always struggled with it anxiety when I was a child but it never picked up until I was about 17 and I ended up being diagnosed with HH when I was 21. I go through ups and downs which is why I know it's definitely not the whole cause of it (and because now my ferritin level is 59 and it's been in the normal range for a couple of years now but anxiety is still sometimes a problem). But it's very frustrating that it's just brushed off.
There is plenty of research out there to support the idea that hemochromatosis would impact brain function, just no direct research. I have had one doctor who completely agreed with me that it was likely, otherwise they have all been twits who can't be bothered to think past the outdated info they learned.
I studied neuroscience in college after I got better. I did find some researchers looking into a theory that dissregulation of iron might be related to epilepsy, and some interesting studies about that. I also found some research able to demonstrate that iron does indeed cross the blood brain barrier, but they were related to dimensia. It is exasperating that no one can get funding to research hemo, but since it can be treated with phlebotomy there isn't any money to be made.
I was going to study it myself in grad school, but I'm still to sick to do grad school. A bachelors nearly killed me. I still suffer the extreme fatigue.
I can only commiserate with you about the fatigue. I have been 'de-ironed' for 14 years (my optimal level is 34) but I am still flattened by extreme fatigue and body pain. I cannot find the answers to that either. Symptoms for HH always include fatigue but there is no research supporting it or what causes it - is it physical or neurogical? There are a number of accepted symptoms for HH that are unexplained.
All I can do is consume only the healthiest foods (the 'super' foods), pretty much the paleo diet but I do have some dairy, a piece of seedy toast with my protein breakfast, a small glass of red wine with dinner, etc. and the foods that are said to reduce the uptake of iron. I have been also finding ways to consume more coconut oil as well as XV olive oil. If I end up having sugars, starches, grains, just digesting it tires me out for a few hours not to mention the discomfort. And, keep having my venesections of course!!!!
To search research on HH and the brain, I find I get better responses using "Iron overload and ........" rather than using the word hemochromatosis.
I subscribe to the Medifocus Guidebook to HH to get connections to research and be advised of new research. So far nothing on the brain. Sometimes it is useful to try coming in through a back door and see if you get any clues which might help, i.e.
http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2006.00817.x/full
Do you know what part of your brain is affected by your epilepsy, or from where it originates? If you know that, perhaps you can try there.
Have you checked out the symptoms of cerebellar ataxia? King George III sounded like he had similar symptoms, and on autopsy was found to have what was described as 'black sludge' in his heart. Now what does that sound like?
I know and of a number of people with bipolar and hemo although that is often denied as well. The Iron Institute acknowledges it. Have you talked to anyone there.
After I was diagnosed I remembered reading about a fellow in the US who set off airport metal detectors and he was found to have a ferritin level >10,000. I was later put in communication with him, and he told me, among other things, he was now suffering epileptic fits, and finding himself on the floor after he goes to sleep.
My Head and Neck Oncologist has seen results of damage by iron breeching the BBB. He agrees with me that, although medical specialists will claim there is no proof, it is only because research cannot replicate it (i.e. with mice), but it does exist and case studies are all we can go on for now.
No, funding for HH is scarce because there is no pharmaceutical product that is useful in the treatment of HH. We buy a lot of stuff to try to feel well though, or to treat the complications caused by HH. Somewhere there is a team of scientists trying to find a medication to do the job of Hepcidin. It won't help those of us who already have damage from late diagnosis of HH, but if successful will be wonderful for our children/grandchildren.
Out of interest, what HFE mutation do you have and what was your ferritin level on diagnosis and where are you now? As well as your TS%.
I really hope you find the strength and endurance to study this area. We need people like you. I am always trying to encourage med students to become "Hemochromatologists", as none exist right now and someone who has it is even more valuable as you know where we are coming from.
I was diagnosed with Schizophrenia, anxiety, depression until experiencing a huge improvement with a change of antidepressant. Investigations into continuing fatigue revealed HH. I have recently come off all psychotropic medication so it's fingers crossed this aspect of the condition is under control. Still frustrated by the fatigue but feel like I've experienced a miracle
An update to my search regarding fatigue.
Among other things I have been searching for answers regarding fatigue. It is accepted that it is one of the symptoms (and you know, some people may not suffer that either), but there is no research on it to prove it, how or why. However, I have been noticing that the hypothalamus has been added to the list of organs that are affected by HH. Now if you google this, you will find that fatigue, sleep and circadium rhythms are controlled by the hypothalamus. Also interesting for me, body temperature - as I often wake up 'iced' - in the tropics (without airconditioning). Sometimes happens in the daytime too, as well overheating when others are not so hot. So my thermoregulation is up the creek. What can we do about it??
It is the hypothalamus which also tells our pit gland to give us hormone problems, e.g. libido. The hypothalamus does not have a blood brain barrier because it has to allow peptide hormones to pass through. It also samples the composition of our blood (full of iron!). Hepcidin, which does not switch on to switch off our iron absorbtion (when we have HH), is also a peptide hormone which resides in the liver - I wonder if there is any connection.
So many questions and no answers.
Hi Mark,
The combination of iron overload and neurological symptoms suggests aceruloplasminemia - it's as rare as anything, but when high iron and neurological symptoms go together, the recommendation is to do a blood test for ceruloplasmin.
The National Organization for Rare Diseases (NORD) lists the symptoms of aceruloplasminemia, which vary from person to person, and can include trouble controlling movement (shakiness, muscle spasms, eyes squeezing shut involuntarily), slurred speech or difficulty speaking, behavioural and emotional changes, and trouble thinking. The NORD posting also gives a list of other (really, really, rare) iron overload conditions ("Related Disorders"
that also can cause neurological symptoms, which as a group are called neurodegeneration with brain iron accumulation (NBIA) disorders.
If any of these fit with your experience, might be worth discussing with your doctor(s)?