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Old 10-07-2015, 09:48 PM #1
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
Default Could thyroid medicine be causing my small fibre neuropathy?

Hi All. I've been moving location and haven't had time to post here for a while. But it's the early hours here in Scotland, a mild night, and I'm awake with hands and feet in the usual hell of scalding pain. I've yet to receive the letter from my new rheumatologist but I'm anticipating that he too takes the wait and watch approach as the last one and my old neurologist did.

This thought came to me last night but I lack the courage to act on it. Maybe the Levothyroxine 100mcg that I've been taking for over ten years for an under active thyroid, could be the guilty party? The only other drugs I presently take are Lansoperasole, Prednisolone 2mg, which I'm to taper off by Christmas - and newly on a drug for my high blood pressure, Ramiprole.

I've had this parasthesia in my peripheries for over two years now and it's affecting my gums and lips badly now too. Nothjng has shown up in nerve conduction or skin biopsy tests and only paired Ogliclonal bands in lumbar puncture. I have seen the dentist who found a gum infection but nothing else untoward. I've seen the optician who found a flame haemorrhage in one eye - indicating high blood pressure. I've had a carotid duplex which showed calcification of all my carotid arteries - but told this is "normal" for my age (52). I've had EEG, autoantibodies checked and all normal or equivocal. My B12 has been within normal range and I've tried supplementing previously and it's made no noticeable difference.

This wretched affliction is now in my gums of front teeth as a kind of burning mouth syndrome and feels tight all around my teeth and lips.

Given that I'm terribly drug sensitive and have always suffered from allergies I have occasionally wondered about the Levothyroxine being the problem. But then I think no surely not as it's just a synthetic replacement of the real thing isn't it?

So tonight I'm going to try not taking it and see if this makes any difference. I'm aware that my body needs thyroxine to function but surely a week or so off it won't harm? I have an appointment to see a new GP on Tuesday morning so if it has made this awful pain and discomfort stop at last then I plan to ask him to let me try an alternative such as T3 or natural desicated thyroxine -NDT. It's unlikely that i will persuade an NHS doctor to put me on this natural form of thyroxine - and maybe it will affect me in the same way or possibly even worse. But if I don't get to the bottom of this problem soon I fear I will end up giving myself a stroke or heart attack from the anxiety, insomnia and stress it causes me day in day out.

Does this plan make sense to anyone here? Has anyone else found that thyroxine has given them widespread SFN like mine?
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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