Auto-immune disorders

[Jelliebabe]

Cant the refer you to more than one specialist??? <<<Confused>>>

[maytreefrannie]

Best wishes Sarz, and I hope you'll get some good help/treatment/answers soon.

[snohare]

Cant the refer you to more than one specialist??? <<<Confused>>>

Huh ! If the NHS was fighting the battle of the Somme, they would be using muskets instead of machine guns. Sometimes NHS stands for No Help Supplied, and anything auto-immune is generally right bang in that category.
A rheumatologist is the person you need to see, Sarz. Every antibody in your body is primed to attack a certain type of cell by recognising receptors on it; auto-immune disorders are where they also start attacking similar receptors in body tissues. This means any auto-immune disorder has a specific pattern of attack, and rheumatologists are the people who really study this type of inflammation. Problem is, lots of different receptors, no broad insight into the workings, and lots of individual variations in receptors; and if the inflammation gets worse the number of receptors involved may increase.Yes, an endocrinologist will know all about the thyroid, great at anatomy and biochemistry these guys, but without knowing the dozens or hundreds of "fingerprints", s/he will have no contextual knowledge in which to make informed guesses. The sort of info you are likely to get is like diagnosing an overheating car engine when in fact the car is on fire; accurate but useless.
I have Crohn's Disease, and manage mine by diet and lifestyle alone. This may not sound very pertinent to a thyroid problem, but bear in mind that literally half the immune system is in your intestine, and that is where most abnormal immune system responses begin. Your gut actually acts as a memory for the immune system; what the big guns such as infliximab try to do is reboot this memory - wipe the slate clean and thus stop the abnormal response.
Dietarily the two things that really work to reduce my bouts of intermittent but often acute inflammation are foods high in carotenes and anthocyanins - sweet potato and carrots, squash, grapes - and probiotics. These can have an almost immediate effect, however the longer inflammation lasts the slower it is to reduce.
Probiotics work by switching off genes in your gut which are there to respond to bacterial and chemical insults, but for a variety of reasons may become overactive and start an overeager inflammatory response that some pathogens may take advantage of. Hence the findings regarding antibiotics; the problem being, wiping out too many strains of gut bacteria with antibiotics makes your gut more likely to mount an abnormal immune response. Probiotics really are trying to swamp the "aggressive/bad/troublemaking" bacteria and response, with bacteria that have the opposite effect.
To give you some idea of the state of play, it has just been discovered that every human on Earth seems to have one of three types of gut ecosystem, rather like the four (?) different blood types, and when you try probiotics it is by guess and by god as to whether or not a given variety will work. (Standard probiotics yoghurts are not heat stabilised and have very low numbers to begin with, so are really only maintenance doses: health foods are the place to go. The NHS has only one probiotic on offer, and even most pharmacists will not find it on the pharmacopiea it is so well buried. Not on the UK doctors' radar at all.) However specific mechanisms working in the gut are well proven, so the last paragraph is not speculative.
If you want to find out more about steroids, anti-inflammatories, infliximab, Hashimoto's Disease, Sjogren's and other associated things, you could do a lot worse than go to a website called Healingwell.com, it is basically a collection of health forums with about half a million members, most of whom are patients, and with absolutely nothing on sale, no hidden costs or catches. Obviously there are a wide range of views on offer, but the basic anecdotal evidence en masse is far more accurate than any textbook or training a UK doctor trained twenty years ago will ever see. IMO, many GPs are out of their depth and worse than useless with diagnosing any rare auto-immune disorder. Their training is not fit for purpose.
Feel free to PM me with any detailed questions, it would be nice to think that all those endless hours of research would be use to someone else !

[Jelliebabe]

WOW Snohare - I'm off to have a look at that site!

[snohare]

It is really is gold standard for health forums jelliebabe, it abides by a very good code of conduct. Very American of course, they spend a lot of time worrying about paying for their treatment (although there are people from all over the world), but it really gives an idea of the "shape" of illnesses.
Their equivalent of PSB and FYM :
Dx: diagnosis
Rx/meds: Prescription/medications
PCP: Primary Care Provider
GI: Gastroenterologist

God bless the internet !