NeuroTalk Support Groups - intermittent neuropathy

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - intermittent neuropathy (https://www.neurotalk.org/peripheral-neuropathy/253217-intermittent-neuropathy.html)

Quote:

Originally Posted by AtticusFalcon (Post 1273825)

Lonestar,

I had my thyroid tested back in June; all results for TSH and T4 were normal. I'm 41 (a bit older than you obviously) but all my bloodwork looks good. I even went to an endocrinologist and he couldn't find anything blood-related. I've been tested for everything so he found no need to test for anything more.

I take benfotiamine and Alpha Lipoic Acid too.

Isn't it amazing how good it feels when you're feet AREN'T burning? It's true freedom. And then in the afternoon (just like you) it flares up on and off for hours and it's all I can think about. And at work, I can't even take off my shoes/socks or raise my feet.

Stress and worrying about also exacerbates it.

I think the next time I see my neurologist he will run some tests. I believe in my case a skin biopsy will either confirm or rule out small fiber neuropathy. Large fiber neuropathy has already been ruled out.

Wishing you the best.

AF

Hey Atticus,

I can definitely relate to the stress component of this, and I think most folks on this forum can too. Even though my nerve symptoms have (thankfully!) always been pretty mild compared to most of the PN stories I've encountered (i.e. they've never really interfered with my daily life beyond being an annoyance), the uncertainty as to the cause of my symptoms and the possibility of my neuropathy getting much worse has been a big point of concern for me.

For me, time, lots of research, and some improvement after starting thyroid treatment have really helped to ease my stress about my nerves. Like you mentioned above, stress definitely exacerbates my symptoms too, so things tend to compound in either direction - stress leads to more symptoms, which leads to more stress, and vice-versa.

It sounds like you're doing everything you can to diagnose/treat your PN and that you've largely ruled out the standard metabolic stuff including thyroid.

One question though: do you have the actual TSH/T3/T4 numbers from your blood test?

The only reason I ask is that "normal" TSH is a bit of medical gray area. I recall reading a study that suggested anything over about 2.5 pg/mL is higher than ~90% of the population. Many doctors won't consider treating thyroid disorders until either T3/T4 is off or TSH is consistently over 10 pg/mL. If you're on the high end of the normal range (TSH>3.0 pg/mL), thyroid could still be a factor. For reference, my TSH was typically around 6-8 pg/mL for years. Until my nerves started going haywire, I was basically asymptomatic, and to this day I have had no other symptoms consistent with thyroid problems except slightly elevated (though still "normal") cholesterol (i.e. normal weight, not lethargic, no hair falling out etc.).

Good luck going forward.

L

Quote:

Originally Posted by Lonestar (Post 1273850)

Lonestar,

My TSH was under 2 and T4 was in the mid-range as well. Endocrinologist doesn't believe it is metabolic as I've had a pretty comprehensive workup prior to even getting any symptoms back in September. My internist said he will run thyroid again next I see him. I don't know what T3 is (or that there was one). I have to look into that so that for the heads up.

I've done my research on this stuff too, but it does seem like there are so many variables, degrees of severity (as well as all-day-every-day v. intermittent). age, gender, weight, co-morbid issues. With what mine might be (I'll know for sure one way or the other in May when I see my neurologist), all I can do at this point is accept it for what it is, as annoying as it is.

Best Wishes,
AF