Even though he is retired from the NHS, did you by chance ask him for a possible reference/name of a doctor that might be willing to help you? When you get a little string of hope that a doctor understands and confirms your condition, then you grasp a hold of that string and hope they can point you in the right direction. If he does know someone that might be willing to at least look at this, it would be even better if this endo gave a call to the doctor...sort of leading your way, if you know what i mean. After all, if he's been around long enough to just now be retiring, then he likely knows all sorts of doctors in the system (or outside the system)! Ask him for his input...a name or two.

That's a great idea Enbloc - and it handn't even occurred to me to ask him this?! I think he was hoping I'd see him again and I will be in 6 weeks - to let him know how I've got on with the T3. By this time I should have tried it for about a month and have blood tests done to show if it's made a difference. If it has and no problems that it then I will be on it for life as I am T4 already. I guess this will be the time to ask about seeing an NHS endocrinologist. It's expensive for me this way of course but st least I can see him again when I choose and fast track onto some new treatment at last. It is cheaper the second and subsequent times so we feel it's worth it to be under a very eminent and experienced doctor before he retires altogether.

Meanwhile I'm seeing a young neuro who isn't yet a consultant but will be soon, at the end of this month. I'm also going to be under a new rheumatologist sometime over the next six months - both in same large NHS teaching hospital. A friend of mine has Addisons and is already under an endo there whom she is happy with so, in time it may all start to add up to a proper picture of what is happening. My real terror is that they decide it's all functional neurological disorder and I'm abandoned to my fate. I told this endo and he agreed that would not be good at all and said I must keep reminding them of my fluctuating high inflammatory markers and my paired o bands as these are key to not being dismissed. Hell's teeth it's hard work I'm in bed again most afternoons because I'm too dizzy and numb now to cope with real life for more than a few hours! Mat x