gaz gtr-

Mel is absolutely right about the B-12. My PN started the first week in June and it started, not with a whimper, but with a roar, on the tops of my feet and hands and in my shinbone area as well as my forarms. I started taking the B-12 immediately, along with many of the other supplements posted on this site, and started to feel a great deal better. I still have a far amount of burning but not like I did the first 3 weeks.

An added advantage of the supplements is that I feel better. Prior to the supplements I was always so tired if I became still I would go to sleep. Now I have alot more energy.

Are you taking any of the drugs typically perscribed for PN?

A gluten intolerance will also cause thyroid and neuropathy problems. Celiac disease/gluten intolerance is the #1 autoimmune disease in the world, but often overlooked. Many people who go gluten free, will find their thyroid will normalize and many will see neuropathy symptoms go away.

It's worth asking for a celiac panel to be done.

darlindeb25 - I forgot to mention, I have had the celiac antibody test (from a finger-prick blood test) and was negative.

Leslie - not taking any PN drugs. Doctor prescribed amitriptyline prior to diagnosis but didn't want to take something that would mask symptoms whilst I was still looking for the cause. Took it on a few days since diagnosis but found it quite drowsy, didn't help that much, and in all honesty, I'm not really in enough pain to require it at present.

MelodyL - I have been taking sublingual B12, but as cyanocobalamin, which I believe is the inferior form? It's also just 200ug a day which I think is less than the one you mention, which I will check out. Actually, I've found since taking the B12 I have had some relief, at some times, but of course, you never know if that's down to the supplementation, my TSH gradually coming down, or a bit of both.

Finally, glenntaj (or anyone else), is there anything else you think I should be screened for that I haven't already? Most of my worries about disease that typically co-occurs with hypothyroidism have been pretty much eliminated - Lupus, RA, and anything else that becomes unlikely with a negative ANA, RF plus negative CRP and ESR.

The only other things I planned to ask for were the skin biopsy and possibly an ultrasound circulation check.

The Lizajane spreadsheets test page(s) will provide you with
every test that is currently used to Dx all types of PN.
They were done as a combined effort of PN sufferers,
but Lizajane is really the motivating and greatest contributor, altho
glenntag (and many others) have provided input.

The skin punch is a good idea, to determine small fiber problems.
Updates on EMG's & Nerve Conduction Velocity will also determine the
degree (amount) of progression, and should be done on (at least)
an annual basis for comparative study.

also.

If you are only getting levothyroxine and have symptoms, I'd suggest you get some T3 added.

When I was 30 I had the foot/hand symptoms severely.
Doctors could not tag my hypo because my blood work was nearly normal...it was a radio uptake that showed damage and then I finally got the levo. Within 3 mons my feet improved about 90% --but they are not perfect to this day. Within a year the pain stopped, and the tingling continued as my feet healed.
I have only burning occasionally now.

Levothyroxine requires two elements for conversion in the tissues to active T3. Levo is inactive T4. These elements are zinc and selenium. If you are deficient in either, your levo will not work well for you at all. So consider some supplements of these to see if they work for you. Some drugs deplete zinc heavily...ACE inhibitors for example used for blood pressure.

Doses--- max selenium 100mcg/day
zinc up to 30 mg a day ( best form is OptiZinc brand)

I'll be back next week.

It's good to hear other stories of thyroid neuropathy, and hear how long the recovery takes.

Once I get my TSH stable (it's still nowhere near normal despite 3 months of treatment), if I still don't feel like things are improving, I will seek to add T3 in. I am also taking selenium supplements, as well as a few other things.

I also bought the Jarrows 5000 B12 and am on it every day now, in a month or so I'll get a B12 test done to check I am storing it OK.

In the 3 months since I commenced T4 treatment, my feet have actually improved a bit... my legs are still fairly painful though. Long journey I feel.