Is neuropathy related to Thyroid? If so, what t... - Thyroid UK

Thyroid UK

143,106 members168,434 posts

Is neuropathy related to Thyroid? If so, what tests do I get?

SueK2 profile image
43 Replies

I have periperal neuropathy primarily in my feet/shins. Is neuropathy related to thyroid issues? If so, is there anyrhing else to test except for a standard thyroid panel? I do currently take B12 injections every 4 days so I have that cause covered which has helped but wondering if something else is going on. I have a wonderful neurologist that will order tests if I have good reason. Has anyone had success with healing neuropathy by treating a thyroid irregularity?

Written by
SueK2 profile image
SueK2
To view profiles and participate in discussions please or .
Read more about...
43 Replies
RedApple profile image
RedAppleAdministrator

SueK2, Symptoms of periperal neuropathy can be caused by thyroid hormone issues, although there are of course other causes too.

Do you already have a diagnosed thyroid condition? If yes, are you currently taking any thyroid medication?

SueK2 profile image
SueK2 in reply toRedApple

Many thanks RedApple. No, not taking anything for thyroid or have I been diagnosed. I wanted to discuss the possibility of a link btw periperal neuropathy/thyroid w/ my neurologist but wanted to try to educate myself a bit first. I would tell him I would like to explore the possibility and get tested but wanted to know first if a particular hormone is responsible as I would make sure that hormone is included in the panel.

RedApple profile image
RedAppleAdministrator in reply toSueK2

It would certainly be worth getting a full thyroid panel done, at the very least on a 'rule it out' basis.

TSH, FT4, FT3, and thyroid antibodies. If you're in the UK, and it will be a while before you see the neurologist, and your GP won't order the full test for you, consider doing a home test like this one randoxhealth.com/en-GB/at-h...

SueK2 profile image
SueK2 in reply toRedApple

Thank you I will ask for the Thyroid tests you mention, and exactly, to rule anything out. That test is a very good price, I may do that.

Sparklingsunshine profile image
Sparklingsunshine in reply toSueK2

PN can be caused by numerous things, being hypo can cause us to retain extra fluid which can press on nerves causing tingling etc. Other causes can be conditions like diabetes, B12 deficiency, Transverse Myelitis, MS, Fibromyalgia, Spinal Stenosis or arthritis in the neck or spine.

I have pins and needles almost all the time in my hands and feet and have done for years. They blame mine on having Fibro but I also have pernicious anemia and hypothyroid so who knows? I've had a brain MRI to rule out anything nasty and my nerve conduction studies, which is a very common test for PN was normal.

SueK2 profile image
SueK2 in reply toSparklingsunshine

Thank you for your response in confirming that irregular thyroid can cause PN. My Dr labeled me "idiopathic" because after numerous tests to rule out most of the major diseases you mention, he couldn't pin down a cause. I did think diabetes at first as my gramdma died of it but my A1C was only 5.2.

gabkad profile image
gabkad in reply toSueK2

Many decades ago someone said to me 'idiopathic' means the patient is pathetic and the doctor is an idiot. The elephant in the room is your B12. Do you know for how long you were deficient? Anything under 200 pg/ml can cause neurological symptoms and the recommendation is to keep B12 over 500 pg/ml.

All that aside, PN can be permanent if it is caused by longstanding B12 deficiency. Someone on this forum (maybe Marz ) said that her lower legs are permanently numb. I might be wrong and misremembering.

A number of years ago I found an excellent video on YT about an American paediatrician who had been put into a nursing home. It turned out, because his friend wanted to get to the bottom of what was going on, his B12 was only 8! No one had tested it. Mind bogglingly negligent. Once he was put on injections, his cognitive function improved so he could work again but his legs were not back to normal and he walked with two canes.

Sparklingsunshine profile image
Sparklingsunshine in reply togabkad

I've had B12 issues since childhood but only started back on B12 jabs about 12 years ago. I had them when I was a kid but then they were stopped.

So I'm wondering if my ongoing pins and needles are in fact permanent neuro damage caused by years of low B12 and no treatment. Doctors I've spoken to just shrug and blame my Fibromyalgia, but then that gets blamed for everything.

gabkad profile image
gabkad in reply toSparklingsunshine

I'm not aware that fibro causes pins and needles. Nerve compression definitely can but that can come and go. I know it causes hyperalgesia so even compression of the skin can be wildly painful. I don't think doctors are being as thorough as they could be checking for all causes including B12 deficiency. Not to mention, the blood test ranges are too wide and someone 'low in range' may have neurological problems. Specialists are sort of siloed and they are like those horses with blinders on so they only see one direction and don't get a panoramic view of what a patient may have going on. I really find it offensive when doctors label patients with fibromyalgia as being neurotic. There's still too much of that going on and it is misogynistic since fibro is much more common in women. Same as back in the day when Multiple Sclerosis was 'paralytic hysteria'. We needed MRI technology to prove that this is actually a real, physical problem.

What I've read is chronic B12 deficiency will cause this and it's permanent. However, when someone has fibro, it's possible to be deconditioned because pain and fatigue reduces the ability to be physically active. Deconditioned muscles don't support the body well and it's easy enough to end up with various spine problems.

Hypothyroidism also results in muscle weakness because a person just does not have the energy to be physically active and be in good shape.

Pushing the body to do more as has been recommended can end badly. All this graduated exercise baloney isn't terribly helpful for most people with fibro, cfids, or hypothyroid. It just makes us more tired and can cause injuries.

I take a sleeping pill every night which at least helps me get restorative sleep because without it I'd be an inactive zombie. I live with too much pain which interferes in being able to get into any stage 3 sleep (sleep study done). I haven't done much reading up on fibro for years now, but there are doctors doing research who consider it to be primarily a sleep disorder that prevents restorative sleep and therefore interferes with muscles recovering overnight from microtears. At which point does a sleep study diagnose a primary sleep disorder when usually by the time someone decides to do one, the condition has been ongoing for long enough that it all becomes a chicken and the egg situation?

I had nerve conduction testing done after my horrendous bout with sciatica due to spinal stenosis. I know I have stenosis at L5 since 2015 but I torqued my low back and all hell broke loose. My toes on the left foot have regained about 95% sensation but it seems they will never recover fully. Same goes for the outer part of the lower leg.

The only way to determine if your sensations are due to nerve compression as opposed to chronic B12 deficiency is by having an MRI done. The healthcare systems are so underfunded, you'd think ordering an MRI will bankrupt the country!

Now I have neuropathy eminating from T11 (also herniated and spinal stenosis). It's really eye poppingly shocking to wake up one morning to see a swelling the size of a seven month fetus sticking out from the left side abdomen. It's not a hernia. Ultrasound done. Next up: nerve conduction study. Doctors don't really care if you are 66 years old and becoming deformed. Maybe if I would be a young and sexy 25 year old..... Good thing Boho dresses are back in fashion.

What next?

Sparklingsunshine profile image
Sparklingsunshine in reply togabkad

Well the theory between parathesia, aka pins and needles and Fibro is that we have super sensitive central nervous systems and sensation is magnified and experienced as pain, discomfort, stiffness even when there isnt any physical cause like joint or muscle damage.

Its been described to have a central nervous system on constant high alert rather like a faulty car alarm. Most of the Fibro sites I've visited have mentioned it.

But as I said everything from the sinking of the Titanic to the decline of the dinosaurs has been laid at the foot of Fibromyalgia and once you have it doctors dont bother to investigate further.

I do manage to stay pretty active, its a struggle sometimes but I enjoy exercise and I know its good for me. Fibro and Ehlers Danlos have taken a lot away from me already, I dont want to lose anything else.

gabkad profile image
gabkad in reply toSparklingsunshine

Thanks for your input.

I've got hypermobile joints as well and it's not good. Both of my daughters have scored 9 out of 9 on hypermobility but neither of them wants DNA testing for EDS. They were told to keep in good physical shape or end up with a myriad of injuries.....(like their mom... wish someone would have warned me when I was younger. Bad enough to be undertreated for hypo for twenty years. I'm sure plenty enough of the damage accrued from that as well. Ya can't relive your life.) I'm going to be cremated. I don't want some archeologists digging up my bones in a couple hundred years just to diagnose me with DNA testing of my ear bones like they are currently doing for 'ancient DNA studies'.

SueK2 profile image
SueK2 in reply togabkad

Thank you for commenting. I love your anecdote about idiopathic! On my first visit my neurologist checked my serum B12 (along with other vitamins) which was 349 but that was with the occasional multivitamin so I could be assured that in reality it was much lower. I started supplementing daily with 1000 mg oral methylcobalamin (on my own, Dr did not advise, only recommended gabapantin), and after a few months I could use a mouse again without padding. After realizing this success I maintained the oral B12 and graduated on my own to self injection following advise from the B12 Society in yhe UK, and their NICE guidelines. I still have some symptoms so was wondering if something else is going on. As in another comment, I need to revisit B6 as I was low on that too, so we'll see. I will ask for a Thyroid panel if anything to rule it out.

Sparklingsunshine profile image
Sparklingsunshine in reply toSueK2

Just a heads up low calcium can cause pins and needles too.

gabkad profile image
gabkad in reply toSparklingsunshine

That's easy enough to prove with a routine blood test.

Marz profile image
Marz in reply togabkad

b12info.com Click onto Films where you will find the video of Dr Carr and his sad story...

RedApple profile image
RedAppleAdministrator in reply toMarz

Marz, that video doesn't seem to be available any more :(

Marz profile image
Marz in reply toRedApple

Type - Dr Carr Video - into search box. Heading of Films pops up - scroll down for Dr Carr video. Have just checked...🌻

RedApple profile image
RedAppleAdministrator in reply toMarz

It is still mentioned on the site, but there is no video. I have looked everywhere and it's not there. It's also been removed from YTube. If you have found the actual video somewhere (not just the words mentioning it), please post the direct link.

Marz profile image
Marz in reply toRedApple

2nd video down under the heading FILMS. Just found it again.

Scroll well down on first page of the link - " first 5 mins of the video ...."

RedApple profile image
RedAppleAdministrator in reply toMarz

Well one of us is going mad! 😊 Here's a screenshot of the films page. No Dr Carr video visible to me.

B12 Films page on B12info.com
Marz profile image
Marz in reply toRedApple

youtu.be/QqjyAeOLyKM

RedApple profile image
RedAppleAdministrator in reply toMarz

Ah, finally we got there, thanks! 🤣 Confusing because the video title doesn't mention Dr Carr, so no way of knowing that video is about him.

Marz profile image
Marz in reply toRedApple

Am glad you got there in the end. I have noticed many folk are so busy and only scan read posts. The relevantvideo is the second pic down on YOUR screenshot - so no I'm not going mad !

If so then things should improve as I have just had my weekly j@b 😂

RedApple profile image
RedAppleAdministrator in reply toMarz

No, but as I said above, it doesn't mention Dr Carr in the title, which is what I and others would be looking for. The intro is by an American female, so you have to listen to that before you hear her mention Dr Carr. Ovbious when you already know, not obvious if you don't. :)

Marz profile image
Marz in reply toRedApple

😮‍💨

Marz profile image
Marz in reply toRedApple

The American female speaking in the video is Sally Pacholok who wrote the Book - 'Could it Be B12 ?'. There is a Film of the same title on YT. Slightly 'American' but does make the message clear - especially for those who do not have enough time to read...

Many years ago I travelled from Crete to attend the B12 Conference at Loughborough University where Sally Pacholok was in attendance. Had a pleasant chat with her. Dr Malcolm Kendrick also spoke - and remembered me from the TUK Conference when we shared a breakfast table with others - discussing VitD 🌞

SueK2 profile image
SueK2 in reply toMarz

Thank you Marz, I'm well into B12 therapy with injections. My D was OK at 40, could be better and I take that regularly with K. I was thinking of exploring other avenues as I might have more than one condition and wondered if thyroid imbalance could cause neuropathy. I've got some great input here!

Marz profile image
Marz in reply toSueK2

If the VitD test measurement is ng/L then 60 would be good. UK measurement is usually pmol/L when 100+ would be a good result. Dosing based on result as a rule. How much D3 are you taking ? Am sure low thyroid could be involved with neuropathy as T3 is needed in every one of the trillions of cells in the body. Along with low thyroid being involved in poor absorption of vitals causing other issues !...and so we continue to find all the pieces of the jigsaw 🌻

J972 profile image
J972

Hi, peripheral neuropathy can be associated with B12 deficiency. Here’s a post from yesterday which is definitely worth a look healthunlocked.com/thyroidu...

SueK2 profile image
SueK2

I'm currently taking B12 injections for the past 7 months, it helped a lot in the beginning but may take some time to alleviate the last remaining symptoms!

Singwell profile image
Singwell

Get your heart function checked too. As far as I know, heart issues can also cause peripheral neuropathy.

SueK2 profile image
SueK2 in reply toSingwell

Thank you for your reply, I will definitly ask about this, it's one thing my neurologist didn't check.

humanbean profile image
humanbean

I had peripheral neuropathy about 15 years ago and I discovered that I was suffering from low levels of Vitamin B6. (I never tested - I just assumed that I had a B6 deficiency since the B6 helped.) The peripheral neuropathy went away but I continued to take the B6. I was taking a high dose - 100mg per day.

A few months later my peripheral neuropathy started to come back. Then I discovered that too much B6 can also cause neuropathy, so I stopped taking it. I was quick off the mark in finding out what caused the second neuropathy symptoms so luckily it didn't become permanent. Nowadays I would not take a Vitamin B product with more than 10mg B6 per dose, although I've seen claims that 25mg doses are safe too. But I still prefer to err on the side of caution.

B6 deficiency : en.wikipedia.org/wiki/Vitam...

B6 Toxicity : en.wikipedia.org/wiki/Megav...

SueK2 profile image
SueK2 in reply tohumanbean

That's what I understand as well, that 10 mg is the cut off for daily dosing. When I originally went in to the neurologist he did include b6 in my blood panel, and I scored the very bottom # in the range. I was also on the low side of B12. Over the past year I've seen improvement with b12 and have mainly focused on that but I'm going to revisit B6 because just as you say too little or too much can cause neuropathy. I greatly appreciate you commenting.

I'm glad you found relielf for your neuropathy- do you still maintain with B6? Are you still neuropathy-free?

humanbean profile image
humanbean in reply toSueK2

I'm still free of neuropathy. I take a B Complex (by Igennus) with 10mg of B6 in it, although I do miss taking it from time to time.

amazon.co.uk/gp/product/B08...

helvella profile image
helvellaAdministrator in reply toSueK2

It is not just the B6 dose but the precise form of B6.

helvella - Vitamers of Vitamin B6

Some time ago, I mentioned that the form in which we take vitamin B6 is important. I think I linked to this paper:

helvella.blogspot.com/p/hel...

SueK2 profile image
SueK2 in reply tohelvella

Yeah, I really need to throw away my B Complex with Pyridoxine - It's only 1 mg but I do also take a small amount of P5P - but the article suggests that Pyridoxine inhibits active P5P, interesting. Thank you so much for this article!!!

Litatamon profile image
Litatamon

I have had thyroid issues & pernicious anemia. And although the b12 shots healed over thirty symptoms my legs were not one of them.

I have since found out I have severe spinal stenosis & I believe that is where the neuropathy is coming from, in my case.

I know it has already been mentioned here but it wasn't clear if you have been checked with a spinal MRI. No clue how a doctor can list it as unknown source if that had not been checked.

But hey I guess I do as it took seven years of me saying I can not walk properly, was an avid walker & I know my own body - there is some disconnection. I got it was all in my head to maybe you're depressed.🤣🙄 I said I know what depression is, I do not have it but if you continue to not find out what is wrong with me......

You know how I got my MRI with a different doctor? I had sepsis and had had scans of my gynaecological area in the hospital and out. And I bought the scans over the years. And some lovely and thorough radiologist wrote about the spinal issue on one of them, even though he or she was supposed to be focused on the other area. I had read it, stored it my head & brought it up years later. And voila.

No one had ever told me it was listed there. It was very much of an emergency situation at the time, so I do understand. But we all really need to read our reports, radiologists often point things out that we are never told.

All the best to you. Please fight for a spinal MRI to rule it out. If your doctor says but you don't have symptoms, answer you do - neuropathy. And educate them that spinal stenosis can come with a total lack of symptoms as well. And it needs to be crossed out, if it has not been.

SueK2 profile image
SueK2

Thank you for your comment. No MRI has been done - only nerve conduction, skin biopsy, A1C, heavy metals, connective tissue cascade, and monoclonal protien study - all negative. I will ask about an MRI!

Jasper79 profile image
Jasper79

I have severe peripheral neuropathy in calves and feet. Have had nerve conductance tests and EMG to confirm. I thought it might be caused by hypothyroidism diagnosed at about the same time 5 years ago. I had no other major symptoms of hypothyroidism and no improvement from treatment with levothyroxine.

Finally recently saw endocrinologist privately. He thinks my neuropathy too severe to be caused by hypothyroidism.

In all earlier tests my FT3 had been low in relation to my FT4. I had fixed my hopes n redressing this with T3 treatment (and thus relieving my neuropathy ) but in last test ordered by endo my Ft3 was up at 80% of range from previous 40%.

If anything my neuropathy is getting worse albeit slowly.

I have struggled to see neurologist but finally have private appointment in a couple of weeks, but, having always felt I would find a cause, now feel much less hopeful.

penelope2 profile image
penelope2

Gosh it's so complicated. Have learnt about B6 so thank you.Yes I have PN and I believe mine is caused by autoimmune. Specialists do not know about autoimmune. Painful, tingling and lack of feeling in feet like you have tight socks on all the time even with bare feet. Nerve conduction studies can be large or small nerve fibres, and one doesn't always pick up the other one.

Hospital labs vary with high and low range, private blood tests are usually more accurate and smaller defined ranges, not sure about home finger prick tests are accurate.

All autoimmune conditions are linked because of the systemic inflammation.

Thyroid conditions are linked with coeliac disease and gluten sensitivity so talk to your Neurologist about this. Don't be fobbed off with it cannot be caused by gluten as the blood test was negative as about a third of coeliacs are negative.

Good luck.

MaggieSylvie profile image
MaggieSylvie

I have PN and I am not (but have been on the verge of being) diagnosed with a thyroid condition. I have fibromyalgia, and blood cancer - which was diagosed later, so I have two or three blood tests a year, and B12 and 6 have never been pointed out to me as being low. My GP prescribed Pregabalin partly for the PN and partly for sleep issues, and it's great but it doesn't help the PN.

I probably should get myself checked again for thyroid/pituitary issues, but to be honest, I am in general so tired owing to pain from wedge fractures and to blood cancer (presumably) all the things that have been going on this year, that it is a long way down the list of my to dos. At some point I should look at my blood results and see how my Bs are doing.

So it seems that some of us have ideopathic PN and others have it as a result of thyroid issues. I don't know ... I notice that HumanBean has managed to get relief from it.

CapnM profile image
CapnM

as said above, yes and lots of other conditions do too. I live with it constantly in cycles, good luck pining it down to anything attributable, i think it would be almost impossible.

it is the least problematic of sumptoms that come and go so I just ignore it mostly.

Not what you're looking for?

You may also like...

Is this thyroid related?

I am starting to learn that thyroid problems are linked with all kinds of other things and was just...
PurpleNel profile image

Is this thyroid related. ?

Hi I have hashimotos , I'm on 150 thyroxine and 10 t3 Just this past two weeks , I've had these...
Sharon-1152 profile image

what more can I do?

I decided to book an appointment with a private endo and he listened and talked to me then said he...
Judyrabbit profile image

Long Covid - Is this Thyroid-Related?

I keep reading about the symptoms of long Covid and wondering if there is any link with thyroid...
penny profile image

Thyroid-S users: is this true??? If so, a nightmare!!!

I just received the following message from my supplier of Thyroid-S: "I have sad news. Sriprasit...

Moderation team

See all
Buddy195 profile image
Buddy195Administrator
helvella profile image
helvellaAdministrator
RedApple profile image
RedAppleAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.