Then you are like the rest of us - looking for answers, and I sympathise with you. However, I have not tried alternative therapies because they were obviously quackery at first glance. As you have found out all scientific medical research have come up with nothing, although there is barely enough research, as it is so hard for researchers to replicate the complications with mice, PLUS get funding. As there are no pharmaceuticals connected with HH (plenty with the complications of), there are none of these companies prepared to come up with funding. Even so, some medical scientists get it wrong too, creating some hope till one realises that they are calling carriers only to have haemochromotosis.
It seems that your drs took too long to diagnose your HH too or you would not have ended up having such complications. Unfortunately, you would have found that arthritis is not eased by venesection. Once the damage is done, there is no going back.
A lot of drs will deny that HH causes a lot of what you have leaving people floundering. There is no scientific and researched proof they say. Although case studies, and MRI's have provided evidence, as do autopsies. Bit late then!
Beta blockers prescribed for arrythmia (which dilate blood vessel also leading to the brain) caused immediate damage to my brain by letting more iron in - total fog, could not say more that a couple of words, brain not talking to bladder, could not remember where I was going or how to get there, could not read traffic lights. Took 3 more years to be able to form a proper sentence and still have problems another four years later. That is cardiologists for you - did not have any idea what HH was about. Yes, reduced dexterity, cognative problems too, but excellent haemotologist believes that no more problems exist once de-ironed. No one believes that it affects brain, except my Head and Neck Oncologist who is looking into it - has referred me to a neurologist. He treated me for a deadly tumour of parotid gland, had tumour on my pit gland too. Lots of other things, same as you. An uncle died of cerabella ataxia - brother of my father who would have been homozygous, who died from cancer before being tested for HH.
Does your medical team believe that HH has cause your cognative problems? How are they treating you? While I was given Carbergoline for my prolactinoma on my pituitary gland, I see from a case study that a fellow with cerabella ataxia caused by iron overload (HH based) was also given Carbergoline to treat the iron in his brain.
Some people are telling me in person (not via blogs like this) that their dieticians say they can cure HH with diet. I tell them not so, but some prefer to believe it. The dieticians are all about selling products - they do not even know how to deal with obesity, or they avoid appropriate advice in order to keep the person coming back.
A lot of people are still learning and we should provide reasons why they don't or won't work, so I try to be gentle.
Latest news re diabetes is that the medication for it can be anti-aging and health improving (not just for diabetes). Drs have found that people on this medication are living longer and healthier than those who do not have diabetes. They would have to be the ones that have seen the light and changed their lifestyle. I saw the word Metformin on the tv screen. So far I have not been diagnosed with diabetes, although I have read medical research that said we can often have the symptoms of diabetes without actually having it. I do my best to eliminate all sugars and starches because my body just can't deal with it. Many years ago, I was also told I had IBS but actually I had 6 duodenal ulcers - that was years before it was found that the Helicobactor pylori bacteria causes ulcers. It thrives on iron, and keeps returning to me despite appropriate treatment.
I don't believe in 'syndromes' - they are actually symptoms of something. Like my so-called CFS was really HH - I refused to accept that CFS was the end of story.
Very interested to hear how your neurological problems are being treated.