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allergy tests?
have they looked at any other auto-immune problems aside lupus and HIV?
I do, which doesn't help my 'of course I'm eating' case (neither does a history of EDs - if you ever want any genuine illness to be taken seriously, don't have depression, anxiety or anorexia in your notes!). It's not massively low any more, though, although I do have to eat loads or it just drops.
But I've been given the once over by gastroenterology (wide selection of blood tests and a camera up each hole) and been given the thumbs up from them.
They've looked at pretty much everything, I think, and then dismissed them, generally for reasons based on randomness. That's my problem with the whole deal. It's not the amount of things they tested for, cause they've tested me for pretty much everything. It's that they just don't listen to a word I say, and change their minds about everything from one clinic appointment to the next. I can't keep track!
It's like when they said, 'well, we've ruled out an inflammatory arthritis cause your joints just hurt, they don't swell up'. Then I said, 'but they DO swell up! it's in my notes', and she just said, 'if you just have pain, you're probably just overworking your joints' like I'd not spoken at all!
I had an eye condition which worried me greatly - had to wait 4 months for an appointment and by 4 months it had gone and there was nothing to see - but it was 4 months of worry
Same thing happened 3 or 4 years later and went to the doctors again but luckily mine was on holiday so saw a locum (spelling?)
When I told him last time this happened it was 4 month wait he said just go direct to the emergency room and that's what I did and it all got sorted out that day - no months and month of worry and cos they were able to examine me as it was happening and affecting my eye - they could tell me a lot more about the conditions and told me exactly what to take to prevent it in future.
.. The UK health system is based on waiting and waiting and waiting - rather then actually getting things done.
I would suggest you use the internet as much as possible and go through all the possibilities you can of conditions that fit your symptoms and then contact their relevant support groups - maybe they can help somehow.
http://answers.yahoo.com/
It's a pretty amazing system - and you can often find experts from around the world will pick up on your question and have an answer for you