Hypothyroid / Peripheral Neuropathy

[Twitchen]

Just wondered if there could be a link between these two things.

I have been hypothyroid for nine years, but about two years ago started getting symptoms of neuropathy in my legs and feet, which is driving me mad - especially at night.

When I asked the endo last year he just completely dismissed it and said only diabetes causes that. He is also the classic endo who says the only figure that counts is the TSH - nothing else matters.

It is like banging your head against a wall isn't it?

I just want to feel semi-normal again

[humanbean]

There are a few common possibilities that spring to mind. Vitamin B12 deficiency and vitamin B6 deficiency. Also iron depletion gives me lots of leg pain, cramps, twitching etc.

If you've been supplementing B vitamins for ages perhaps you have overdone the vitamin B6. It's one of those annoying ones that causes some similar symptoms in deficiency and excess. Also, you may be taking the wrong form of B12 for you and might need to re-think your supplementation choices..

There are lots of other things that can cause peripheral neuropathy.

en.wikipedia.org/wiki/Perip...

I'd ditch the endo and get a new one, because the one you've got doesn't know a lot.

[Twitchen in reply to humanbean]

I did supplement B12 sublingual methylcobalamin for a long time and was told from that my levels were too high at 900+. I still have one now and then, but perhaps I will go back onto one a day and see if that helps. Have also tried magnesium supplements.

Have never supplemented B6 or a combined B vitamin comlpex - just the B12 alone, which I understand you cannot overdose on.

You are right about the endo, if only, but sadly we don't get given a choice.

[humanbean in reply to Twitchen]

If you've never take a B complex then perhaps it is time to start. It is considered to be a bad idea to let the various B vitamins get out of sync with each other i.e. having high levels of one and deficient levels of another is not good.

Personally, I take Thorne Research Basic B Complex. It contains B vitamins in a form that the body can absorb easily. It's easily sourced on Amazon and other supplement sites.

thorne.com/products/dp/basi...

B6 deficiency can cause neuropathy symptoms :

en.wikipedia.org/wiki/Vitam...

Also, regarding supplementing with B12, once you have been supplementing, testing levels is pointless. And having a high level from supplementation isn't a problem because it isn't toxic.

stichtingb12tekort.nl/weten...

My levels of serum B12 always come back as >2000.

[Pastille in reply to humanbean]

I was thinking more about saving money than toxic levels

[humanbean in reply to Pastille]

I seem to be a bit of an oddball with regard to B12, having always had high levels along with deficiency symptoms.

Regarding saving money - yes, I try and do that too. My suspicion would be though, that anyone who has been very low in B12 before may drop down in level quite quickly if they stop supplementing.

The main thing I do to save money is to delay replacing a finished bottle of one of my supplements. If I start to feel worse after a while I assume the missing supplement is necessary and then replace it. Sometimes I might discover I feel better for a while then go downhill. In that case I might replace with a lower dose than I'd taken previously.

[Pastille in reply to humanbean]

Mine was not too bad at 732, I only take 3000mcg daily but I might even reduce that. I know we wee it out but it mounts up in cost! I was without a B complex for a week or 2 and just added one which I think is stronger and I have had quite a few symptoms. I think I am quite sensitive to the B vitamins even more so than iron or anything

[humanbean in reply to Pastille]

If you are sensitive to B vitamins perhaps you could look into methylation problems. Dr Myhill has stuff on this :

drmyhill.co.uk/wiki/CFS_-_T...

To be totally honest, methylation is one of those things where I know the buzz word but don't know (or understand) any facts.

[Gambit62 in reply to humanbean]

Think a functional B12 deficiency is more likely to explain continuing B12 symptoms - the most common reason for functional B12 deficiency (plenty in the blood but none getting through to cells where it is actually needed) is treatment for B12 deficiency - its an auto-immune response to high levels of B12 in the blood which creates a protein that binds to the B12 stopping it from transferring to the cell level. I'm not clear if this is related to MTHFR at all - may be, may not be - one study implied it affects about 40% of those treated for B12 deficiency - waiting for levels to drop back below the threshold for the response is not necessarily an option which means going to the opposite extreme of keeping levels so high that the response can't bind all the B12 and enough gets through

[Pastille]

I have just been looking this up myself. I keep getting a burning feeling on my arm like I have burnt it taking something out of the oven. ( but I definitely haven't burnt it ) It's driving me mad. And every so often I feel like someone is stabbing me with a pin in the tip of my big toe and this makes me jump and hurts! I have been supplementing sublingual methylcobalamin 3000mcg daily and take B complex so god knows! I'm not diabetic

[Twitchen in reply to Pastille]

It is horrible isn't it? Quite frightening. I just wish they would take us seriously and do more to find out what is wrong.

[Hidden in reply to Twitchen]

I think pins n needles in arms and hands and legs is v common in hashis. I've had it for years. I think it is better if I take a b12 before going to bed but I may be deluding myself.

[humanbean in reply to Pastille]

I used to get a burning feeling in my feet. T3 fixed it for me. I would definitely fix any shortages of vitamins and minerals as well, but definitely consider adding T3 to see if it helps.

[Twitchen in reply to humanbean]

I have been on a combination of T4/T3 for the past couple of years, but am never really sure that my dosage is correct as the endo will only look at the TSH level.

The neuropathy suddenly got a lot worse last weekend and I simply cannot think why. I am wondering if I should try taking just T3 for a while to see if this helps. I always thought T3 was x3 or x4 the thyroxine tablets, but I read on a medical site that they consider 20mcg of T3 to be the equivalent of 100mcg of T4 which is a bit alarming.

I have been on 50mcg T4 and 20mcg T3 per day. Alternatively, perhaps I should ditch the T3 for a while and go back to purely T4.

At least we can experiment (of course only very sensibly, nothing too radical) to try and find out what suits us.

From what I have read on here, it seems that I am quite lucky to have been prescribed T3 at all, some people don't get the option of trying it.

[humanbean in reply to Twitchen]

Based on my personal experience I think doctors usually over-value T3. I think it is three times a potent as T4 and so do quite a few patients who are in a similar situation to me. But doctors say it is five times as potent. I've even read some doctors saying it is 14 (!!!) times as potent, but I can't remember what bizarre logic they were using.

If you have sufficient T3 to experiment then I would say it was worth trying, and you should go for it.

If you can afford private blood testing you could find out the answers to some of your questions.

[Twitchen in reply to humanbean]

I am wondering if it is OK to take just T3 and ditch the T4.

Do we actually need the T4 supplement? Does it do something else that our body needs?

[humanbean in reply to Twitchen]

It differs from person to person. Some people do brilliantly on T4 only. Some people do brilliantly on T3 only. Every combo between these two extremes also works for some people.

I spent over a year on T3 only. I decided something wasn't quite right though, so I switched to NDT for a few months. I still felt something wasn't quite right and so now I take a combo of NDT and T3. I may change again, who knows?

If people are in dire straits (health-wise) before starting treatment I can't see any logical reason why the treatment type and treatment dose that helps in the first few months must still be ideal a couple of years later as the person heals. It might be the same, or it might not.

[Pastille]

Yes I definitely have that in mind, thank you

[Nanny23]

I had same problem with my legs and feet could hardly walk. Asked GP to try raising my synthroid even though TSH was in so called normal range. Well I told him I felt like crap why not raise dose. He actually listened. Leg cramps went away within a week. So surprised assist docs don't even acknowledge thyroid can cause that. I did test positive for neuropathy and I too thought only diabetics get it. He explained that if diabetes runs in your family you could have the gene that exposes you to neuropathy. Never knew that. Hope it helps and you feel better soon.

[Twitchen in reply to Nanny23]

Just wondered, is synthoid T4 or T3? I have never heard of that make. Seems that with these problems we have to try and look after ourselves through trial and error.

[Nanny23 in reply to Twitchen]

Synthroid is t 4

[DawnD]

Hi Twitchen. I have both myxodema (hypothyrodism) and CMT (peripheral neuropathy). I'm not sure if there is a connection. My father, from whom I inherited CMT1A, also has an underactive thyroid, but only developed that in his 70s, whereas I was diagnosed at 27, and the likelihood of an underactive thyroid increases with age.

[DawnD in reply to DawnD]

And my B12 levels are fine - never had a problem with that.

[humanbean in reply to DawnD]

What does CMT stand for?

[DawnD in reply to humanbean]

Charcot-Marie-Tooth - it's the names of the three doctors who discovered it, and is also known as peripheral neuropathy.

[Angel_of_the_North]

Low B12 definitely causes it. My dad had PA - undiagnosed and had it, so did I - both with OK blood sugar. Now my B12 is high, I don't have it any more. QED for me.

[Twitchen]

I was told to stop taking B12 supplements as my level was quite high, but presumably it can drop off again quite quickly, so I think I will start again - perhaps just a couple a week.

[hw7342]

i have has his and get lots of peripheral neuropathy symptoms too... have had them for a few years...