Saw an endocrinologist today. I explained my neuro symptoms - which he seemed familiar with because of patients with diabetes. He studied my thyroid results and wants to try me a combination of T3 and T4 - already been taking the latter for 12 years at varying doses. He was very nice and agreed that it's pretty strange that neither my old neuro nor my rheumatologist has given any explanation of fluctuating ESR, CRP or PV or explained high total protein or paired oligloconal bands - apart from nonspecific inflammatory process. He said if a doctor can't provide answers and won't refer me on then I must just leave them behind and keep looking for better doctors. He's retired from NHS but I found him terribly nice and helpful to talk to. He agreed some type of immune mediated neuropathy seemed the most likely thing and warned me that many doctors get really stumped by patients with very rare diseases so may try and fob my symptoms off as all of the mind. Don't let them!

He did think the dizziness and spacious disorientation (I use a cane all the time now) are probably related to proprioception problems from having numbness in my feet. But they aren't totally numb - I can still feel my finger rubbing up and down them for instance. And recently I've been feeling dizzy and spaced out even when seated. Oh well - I see the neurologist on 30th - hope she's as helpful as this endocrine doctor was today.

Hi Mat

Sounds like you're still having the "one step forwards - two steps back" response from the medical system. At least the endocrinologist didn't dismiss your symptoms outright and has given you some indication of where to next with your thyroid. Did he consider at all that the Hashimoto's itself might be the source of the neuropathy?

All the best for the new neurologist and to getting some informative answers.

Take care.

I will ask him next time Bluesfan about whether he thinks under treated Hashis might have caused the neuropathy. He did say for me not to expect the T3 treatment to work for the neuropathy but I think he suspects it's pretty advanced now and knows from his diabetes patients that this is unlikely to be reversed. When I told him that I suspect I have an immune mediated neuropathy he said that from my test results he thinks this is probably right but proving it would be hard and take a doctor who knows more about very rare autoimmune diseases than I may be able to find. So I am taking it that he doesn't think the Hashis would have caused this problem. Mat x

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

Hi Mat,
The numbness (sensation from the skin) and proprioception (sensatiion from the muscles, joints,..) are mediated by seperate pathways.

And I am glad that you found a good doctor

yes your right, numbness is specifically sensory, or small fiber nerves. Propiroception is large fiber nerves, I actually have partial loss of sensation in joint position, and muscles, its wierd, because it feels like my limbs are very light or not even there, even though i can see it.