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Old 08-17-2008, 07:01 PM
gaz_gtr gaz_gtr is offline
Junior Member
 
Join Date: Aug 2008
Posts: 7
15 yr Member
gaz_gtr gaz_gtr is offline
Junior Member
 
Join Date: Aug 2008
Posts: 7
15 yr Member
Default Probable thyroid neuropathy - chill out, or continue looking for answers?

Hi all,

Please excuse the length of this posting, I'll try to keep it as short as possible but have quite a bit of history so have tried to be as thorough as possible.

I'm 28 and male. In Sep '07, I started experiencing some form of neuropathy. This started off in my feet, and initially was only noticeable after running long distances - I remember having the feeling of a nerve pulling in the sole of my foot after a 5 mile run. This soon subsided and I thought little more of it. A little later, say Nov '07, it progressed to a constant burning on the soles of my feet when walking, initially incorrectly attributed to flat feet. Over the coming in months, the neuropathy continued to progress, with my feet becoming increasingly painful, and my lower legs becoming involved. I displayed all the classic signs of sensory neuropathy - burning, stinging, electric shock like pains, which were made worse by walking. My skin would also become incredibly sensitive - something as innocuous as my trouser brushing across my leg would feel like someone was ironing my leg. No numbness though, and no lack of function.

By March / April, the neuropathy had spread to my hands and arms, with a burning, stinging sensation on the tops of my hands, plus tingling and buzzing sensations in my arms. This is very much linked to movement, for instance, moving my fingers causes tingling at the top of my lower arm (as the muscle moves). It all seems to be sensory - if my arms are covered, I barely notice it.

Anyway, 25 visits to my doctors between Nov '07 - May '07 and countless negative tests later, I was finally diagnosed with auto-immune hypothyroidism, with a TSH of 62 (normal range about 0.0 - 3) and a Free T4 below normal values. I'd clearly been hypothyroid for sometime before developing symptoms. I commended levothyroxine treatment, and have currently been in treatment just under 3 month. My TSH still isn't optimum - it really needs to be about 1, and it's still 10, but my Free T4 is about where it needs to be.

My problem is this - the relief from my neuropathy has been minimal, and very much up+down. When I was first diagnosed, my doctors sort of gave me the impression that the neuropathy might get better pretty quickly, and this hasn't happened. I feel like the progression has slowed, as it no longer seems to be getting worse as quickly as it was, but I still have days when it's very painful with serious nerve-like pains in my legs.. they literally feel like they're about to split in two. This continuing pain is worrying me that the neuropathy might actually be related to something other than the thyroid.

Here are the tests I've had, before and after diagnosis. All totally normal unless listed otherwise.

- MRI brain + c-spine (both totally normal)
- MRI L-spine
- MRI left foot
- Blood tests: ANA, ESR (sed-rate), C-Reactive protein, B12, Folate, Glucose, Lyme, HIV, Rhumatoid factor, FBC, Vasculitis screen, 'Proteins' (done by neurologist, not exactly sure what these were).

I've also had two NCV/EMG tests, once in April (prior to diagnosis), once in August. The EMG was normal both times. The NCV showed 'low current in both feet' at the first test, then totally normal in the next one, but the test was done by different neurologists, and the second guy explained that he probably did the test in a different way, which doesn't mean my feet have recovered. Anyway, in his opinion the test was normal.

My current neuropathic symptoms are as foot pain (burning, shooting, stabbing pains), nerve/surface pains in my legs when walking (like little electric shocks, often made worse by trousers brushing legs), and burning / stinging in my hands, which are a lot worse after being still for some time. For instance, typing this, my hands feel pretty much OK, but if they're inactive for a while, they tend to go dead / to sleep, and as I bring them back to life I get searing pains across the skin.

The last neurologist I saw didn't think there was anything neurologically wrong with me, but told me he'd be happy to do a lumbar puncture and skin biopsy if I wanted to.

I would be interested to hear from people who've recovered from neuropathy, with regards to how long the process took. If you were me, what would you do - continue to investigate other possible causes until the neuropathy is gone? Or kick back, continue taking the thyroid medication, and accept that this probably is the cause, and recovery will take a good while?

Any advice appreciated
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