New member--unable to take ALA?
 

Hey all. I have lurked on this board for about a year. Now I need a bit of advice.

To keep it brief, I started experiencing the classic symptoms (burning, tingling, electric shocks in my feet) in January 2007 (age 26). By April 2007, the burning had spread up to my knees and sometimes to my arms. At the time, I was seeing a Mayo Clinic ortho who referred me to one of their neurologists. He tested me for everything under the sun & of course, everything was negative. My NCS showed no large fiber involvement, so he dx'd me with SFN & eventually titrated me up to 4000mg Gabapentin.

After the gaba didn't work, the Neuro was out of ideas. I boycotted all neuros & bounced around from rheum to rheum b/c of a dx of fibromyalgia the previous year.

I am now 35. I cannot believe it has been ten years. After the gaba, I tried Elavil, Savella, Ambien, Zanaflex & Flexeril. None of them worked, except the Flexeril, but it didn't last long. So after that, I boycotted every doctor in my phonebook.

This year, I came to my senses & went back to the rheum. He has tried Cymbalta & Effexor, but they didn't work on the fibro or the neuropathic pain. I just got an 3rd to try Lyrica, but it is so expensive. I got an appt with UF Health (formerly Shands) in Jacksonville, FL. I had a skin biopsy last week & apparently this Neuro thinks my SFN is non-length dependent since it progressed so quickly.

On to my question. Last year my thyroid was removed. I am now on Levothyroxine, but I read somewhere that you can't take Levothyroxine & ALA together. Is this true? If so, what other supplements can I try? I'm not sure what could have caused my neuropathy. I think I had a UTI before the symptoms started, so maybe it was the antibiotics? I don't drink, have never had chemo or been exposed to toxins (to my knowledge). My blood sugar is normal. I do have mild spastic cerebral palsy & have wondered if there could be a link. I developed idiopathic gastroparesis in 2010. Surely there is a connection between the SFN & GP. I am really ready to take my life back, but I don't know what I'm doing. Does the GP mean my SFN has become autonomic? What should I be doing while I wait for the biopsy results?

Welcome to NeuroTalk.

When I read about a young person with PN, I have to wonder about toxins (drugs like Cipro and its relatives and nitrofurantoin) used for UTIs and other infections. Vaccines too are implicated in autoimmune diseases.

Also DNA errors in methylation will surface in young people too.
I'd suggest you have the DNA testing to see if you require methylated forms of B12 and folate.
You can read about this at:
MTHFR Mutation | MTHFR Gene Mutation | What is MTHFR? - MTHFR.net

That thyroid removal at 26? That is concerning.

Hi Mrs.D. I was hoping you would respond. I have wondered about the abx, too. Since you mentioned vaccines, I did get Gardasil the year before. Could that be the culprit?

My symptoms started when I was 26. My thyroid was removed last year at 35. Sorry for the confusion.

Hi danie02

There are possible negative interactions between alpha-lipoic acid, taken as a supplement, and Levothyroxine - Possible Interactions with: Alpha-Lipoic Acid | University of Maryland Medical Center.

Your prescribing doctor should be able to discuss this with you.

Thanks kiwi. I just had my dose lowered, so I will ask about this the next time I do bloodwork. Off to search the board for gastroparesis posts.

There is still only one study done on animals that suggested effects on tissue conversion of T4 to T3.

Effect of alpha-lipoic acid on the peripheral conversion of thyroxine to triiodothyronine and on serum lipid-, protein- and glucose levels. - PubMed - NCBI

Other sites therefore will give a "warning" about ALA because of this study. ALA has been used in Europe long before the US started using it more often. Also Japan is a big consumer. But still there are no other studies coming to light to corroborate
this 1991 study.

So one can only have thyroid testing if one is concerned about that effect and avoid really high dosing.

If you try to find studies on this topic, you need to use the alternate name for lipoic acid, which is thioctic acid.