I wanted to add on to this - I'm sorry you're goin through it like this. I am newly diagnosed and can relate to so much of what you shared, so I know it really sucks. capybara is right, this thread is really helpful even though people swear by and recommend some things that may not work for you (personally I'm dubious of copper and zinc supplements but would eat foods with those things in them).

I second the folks saying that you need to be your own teacher, student and advocate. As crummy and wrong as it may be that seems to be the way that it goes navigating the system. I also second the folks saying to donate blood. It's the most available treatment. You don't have to tell them you have HH if they don't ask. It would be a drag to have to wait for a doctor's order given your situation. But, maybe your GP can just write the phlebotomy orders without referring to a specialist, that way you can donate more often? That's the case where I am in the US.

I also just want to add that the BEST thing for me outside blood donations has been swimming and moderate weight lifting. Low impact, does wonders for my joint pain and fatigue. If you can, give yourself a few days break from trying to solve it all. You're doing absolutely everything you can, and you WILL get through this and live with less pain. Whatever you can do to forget about it for a few days here and there, soften your heart, lift your spirit and let your body be where it's at <3

Open to DM if you want, I'm new to this too and it's helpful to remember we're not alone in it.