Is there a link between HH and early onset dementia?

Yes, I have read about the link.  It does not necessarily have to be HH - but also includes people with high iron for other reasons.  One case study I read, the patient's outcome improved by taking Cabergoline chelated the iron from his brain.  More and more research with interesting findings are happening.  When you search the internet, you will get more results by using "iron overload" rather than "haemochromatosis".

I had all your symptoms for the 9 years I was not diagnosed.  You will probably find it dissipates with vx.

Iron does breech the brain blood barrier and affects the hypothalamus, and the pituitary gland.  Check what the hypothalamus is responsible for.  Also worth having your pituitary gland hormones checked out.  I ended up having a small tumour on my pituitary gland which caused and excess of one the hormones which gave me some severe hormonal problems which plagued my life for 6 years, due to lack of investigation and diagnosis.

Good levels of Vit D3 and B12, CoQ10, Vit E are helpful for those with HH.

I wish I did know what causes the massive fatigue and hopefully there was a treatment for it.  I still got it 26 year later.  I had to give up work with this and everything else.  That relieved the fatigue a bit but I still have short days.

I did get some relief as a bonus when I started taking 100mg aspirin to thin my blood to make venesections easier.  I suddenly felt lighter and could walk faster, my body pain reduced, etc.  It was like the aspirin (thinner blood) flushed out my cells which were full of stagnated iron.  Purely layman's description.

HH research has found that CoQ10 (a good brand - don't waste your money on cheap brands) and Vit E help repair the mitochondria that is damaged by long term HH.  Also Vit D deficiency is responsible for a lot of our problems.  Buy a practitioner's brand Vit D3 forte drops - 4-6 drops per day.  And have your B12 checked out.  A Vit B12 injection every 3 months might give you a lift as it does me, even though my blood levels were in the normal range.  (just discovered I am repeating myself!!)

You are only likely to get permanent damage if you had years of very high ferritin.  I finally had the chance to have an MRI of my heart but not till I was de-ironed and there were no deposits in the heart so that can't be the current cause.

For head hair loss - I use Nizoral 2% shampoo,  It has an ingredient in it which acts same as Regaine, leave on for about 5 mins and don't use conditioner or anything else on your scalp afterwards. I keep using it.  It took a long time but it eventually grew back but it could have also been hormonally caused.  HH robs our hormones.  So check them out and if necessary get a supplement, particularly for testosterone as that is a very important hormone to retain.  It will probably give you more strength and energy back.

 Don't freak out - just keep having those venesections.  The heart dr I saw who offered me the MRI said - most wisest words of all for those with HH - even if we saw deposits of iron in the heart, we cannot cut them out, suction them out, etc, just keep having venesections.

Hey, it is better than having cancer and having chemo!!!

Wow, I feel exactly the same,apart from the fear about the future.  I really understand that feeling of relief.. When my GP suggested HH was a possible cause of my high Iron, I actively avoided researching it , I didn't want to scare myself unnecessarily..Now I have a diagnosis, like yourself and others, a lot of things make sense.  I'm taking it one day at a time,hopeful that the treatment when I begin it will help with some if not all the symptoms,and hopefully prevent worse problems occuring in the future. I assume you've had the fibroscan and Ultrasound scans already?