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 :)

A few things.
 

That protein test was probably to check for monoclonal antibodies--rogue proteins that are often associated with blood disorders and which can cause neuropathy by interacting with nerve epitopes. (The best test for this is an immunofixation electrophoresis of serum and urine, but many neuros will only do a protein fixation test, which is not usually enough, as small spikes in gammaglobulins can go unnoticed in such a test--did you get copies of all the tests to see exactly which one it was?).

That TSH was absurdly high, and certainly hypothyroidism can lead to neuropathy. Your presentation was not quite "classic", though, and you may benefit from a bit more investigation, such as some more autoimmunity screening. (So much hypothyroidism is autoimmune in nature that it behooves someone with it to check out other autoimmune possibilites.) Many of us find the Liza Jane spreadsheets very helpful in this regard. They're accessible at www.lizajane.org, and they make excellent tracking agents for test results over time (they also help to suggest more obscure test to doctors who may not be familiar with them).

Now, as to nerve healing--it's one of the slowest bodily processes going, often taking years for even incomplete recovery, and along the way there are likely to be many starts, stops, back-ups, and strange sensations as the nerves regrow and reconnect to their targets (the process can be quite painful at times, as the brain learns to reinterpret signals). A diary can be helpful here, as it's hard to tell whether one is getting better except in long-term retrospect.

Hi there:

As far as nerve healing (and yes, it does take a long time), but in my case, I was helped TREMENDOUSLY by taking massive doses of Methyl B-12.

It's a form of B-12. If you go to the drug store or health store, most of their bottles contain cyanocobalimin. This is converted in your body to Methylcobalimin.

I went straight for the source and purchased the Methylcobalimin or Methyl B-12 as it's referred to.

I got mine from Iherb.com. Been taking it since I was diagnosed with diabetic neuropathy over one year ago.

BEST THING I EVER DID.

I went from burning, zips, zaps, tingling, to NOTHING.

Sure, I get the burning sometimes, very very rarely, if the weather goes crazy outside.

But it's so manageable, I don't even know i have neuropathy.

I faithfully take my Methyl B-12 (5000) sublingually, each and every morning. My last B-12 count was 2000, so I am obviously storing it well.

I found all this out by coming to these boards.

My husband who has neuropathy (not diabetic), well he has had it for over 18 years. His feet are numb. But he gets the stabbing between his toes. He's on IVIG of Gammagobulin every month. This has helped him BIG time. Unfortunately the Methyl B-12 did nothing for him. But I really think he gave up too soon. It worked on me right from the start. I got very lucky.

People have neuropathy for many different reasons. Sometimes they don't even know why they have it. All tests come out negative.

As soon as I was diagnosed (they did a testing with a thing on my toes and they asked me to tell them when I stopped feeling the vibrations, and when I gave my answer, I was told I have diabetic neuropathy.

That week I ordered my first bottle. I will NEVER stop taking this.

So look into it. I take the Jarrows 5000 from Iherb.

Best of luck.

Melody

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.

thanks to all for replies so far...
 

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.

this was my initial cause...
 

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.