i have developed transitory numbness in my feet and toes over the last week and also what is difficult to explain but is like a shimmering effect occasionally on my lower legs below the knees, i have also had muscle twitching in my legs and various areas over the rest of my torso for about 6 weeks now, i have also noticed very slight occasional numbness in right arm.
I have changed nothing regarding my diet or routine, I am fit and active, i cycle 5 days a week and swim a couple of times weekly.
i know Thyroid can cause muscle twitching as i have experienced it in the past whenever i have gone up or down on T4 but i have not altered my dose of T4 (150mcg daily) for approx 20 years as 150mcg seems to be optimal for me, i'm just wondering if its the first sign of a Neuropathy issue, not sure if it could be thyroid related even though i'm getting no other obvious thyroid symptoms or maybe its because of something else going on, its a bit concerning..
I am hesitant at this stage to approach my GP because i know they will probably zoom straight in like a heat seeking missile on my thyroid and apply pressure to reduce dose because of my suppressed TSH (003 last test) as its the usual battle every 12 months when my annual Thyroid blood review is due to try and get me to reduce, you all know the script!
what a ridiculous situation that i am reluctant to visit the GP to investigate because of my concerns primarily about being put under further pressure to reduce T4 when there is a chance it may not even be that causing the issue.
If anyone else has experienced similar symptoms to above i would appreciate them letting me know please, views and opinions are very welcome from one and all
Many thanks
Steve.
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SPD1
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Peripheral neuropathy is a common problem with B12 deficiency. Have you tested your levels recently? You can test privately, given your wholly understandable reluctance to see a GP at this stage. Active B12 is the test you want to go for.
No not tested recently but my diet is very good with regards to B12 rich ingredients but i appreciate that doesnt necessarily mean my levels are not below where they need to be ideally, its something i need to check in case it is that or to rule out, do you know what level Active B12 should be at ideally?
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and if B12 below 500, continue separate B12
Post discussing how biotin can affect test results
SPD1, You mention that you have a suppressed TSH. But what about the details... FT4 and FT3? Your numbness symptoms could be due to too much or too little of either of the Frees. If you haven't tested those recently, that would be a good thing to do, along with your Active B12. Finger prick Full Health check from MMH might be worth doing monitormyhealth.org.uk/full...
I'm on 150mcg T4 only and have been on that dose for nearly 20 years
last test 9 months ago
TSH 003 (range 0.10 -4.00)
Free T3 4.35 (range 3.1-6.8)
Free T4 20.3 (range 12-22)
always felt as though i am as close to optimal as i can be on 150mcg.
The strange thing is just before the muscle twitching started around 6 weeks ago out of the blue i had been feeling the best i can remember for years and then the last week all of a sudden numbness in toes and feet and the bizarre sort of shimmering/rippling effect up and down my lower legs, the calves and front as well, also noticed today very slight numbness in a couple of finger tips which comes and goes.
Have you come across people reporting similar symptoms on here before ?
A lot can change over 9 months. There are no guarantees that your body will always require and be able to make best use of the same dose or type of thyroid hormones.
' i had been feeling the best i can remember for years and then the last week all of a sudden numbness in toes and feet and...'
This is not dissimilar to what we often see reported here, when people stop taking their levothyroxine. Feeling great for a while, then the sympoms kick in with a vengeance. I'm not suggesting you're not taking your levo, just pointing out that things can change suddenly, in a similar way to your description.
I'd get the private tests done asap, so that you can see exactly what's what, and either find the cause yourself, or be able to rule those things out before you go to your GP for help.
i have racked my brains, i have changed absolutely nothing apart from my regular toothpaste brand (out of stock) and i can't see it being that but intend to repurchase my usual brand tomorrow on the remotest chance i might be reacting.
I'm religious about taking my thyroxine every night at more or less same time and i always, always have the same brand and never deviate as i know how different brands can affect different people in different ways, i have experience of that myself in the past, my pharmacist is very helpful in that way, i'm on Mercury Pharma and have been for the last 5 years, i was on Actavis for many years previous to that.
I will have to get private test done.
I appreciate high or low levels of thyroid medication can cause numbness i was just curious to know how common it might be on here.
FT4 a bit high then, if i was to lower that a bit say by 25mcg from 150mcg to 125mcg would my FT3 possibly increase/improve in range naturally without adding T3 or is that unlikely? maybe have to try and see ?
Do not ignore B12 issues as they do not improve on their own. Did you look at the link posted by SlowDragon about the signs and symptoms of B12 Deficiency ? The first group of symptoms are Neurological....so it is a serious matter.
My numbness/tingling started many years ago and I have been self-injecting B12 weekly for many years.
Not sure - I think it was gradual and at first I blamed a back issue - then the Crohns - then the Hashi's ! Have been on a journey of learning since 2005. Once I understood B12 was metabolised in the Terminal Ileum before returning to the liver for storage I knew I was onto something. I do not have a Terminal Ileum due to surgery some 50 years ago !
Weekly. The numbness is the same. Terminal Ileum removed over 50 years ago so it was probably too late to repair damage. I feel it helps with spinal pain and compressed nerves. Sorry B12 phials upstairs so unable to quote dose...
I would reiterate the point to get your B12 tested. Also your Intrinsic Factor for Pernicious Anemia. Best not to take any B12 supplements until you are tested as it can affect the results. I presented with similar progressive numbness, twitching etc. Tested positive & am now on 8 weekly B12 injections for PA.
Yes it is ridiculous that we are hesitant to go to our GP because they mess with our dose even if we are feeling well. Causes such unessesary stress & is a real health barrier. I'm currently preparing myself for a visit to my GP re my thyroid meds I've gathered invaluable information from this forum in readiness for my appointment.
Hope you get a result & resolution from your tests.
Many thanks Seabird, there have been a few times in the past when i have had issues where i would normally have gone to the GP to investigate but i have not bothered because of fear that the first thing they would do is focus immediately on thyroid and exert pressure to reduce dose rather than look at the big picture and investigate for other causes, thankfully the issues cleared up on their own, Ludicrous situation.
Ditto...I have always tried to resolve any health issues myself if possible but I'm becoming more defensive if I have to use the GP services. It's a shame really as it seems to be a happening to many people who have thyroid issues & other autoimune conditions but I feel supported by this forum. All the best
hi Steve I also am having toe numbness. It’s just on one foot and my big toe only. I thought it must be nerve damage from a fall I had but on reading this now I’m not so sure. I sometimes have restless legs but again I am not sure any of this is related to thyroid problems. I’ve just had my bloods taken and get results next week. Hope you get to the bottom of this and good luck with your GP.
I have/had the exact symptoms, along with other odd niggles & twitches. I put it down to old age and poverty, and didn't connect the dots at all.
I just happened to be given a random B12 test by my doc, as part of my annual checks. Not sure what for as she completely ignored the results, but I'm glad she did it.
Anyway ....I looked into it and have been self injecting EOD for around 10 months. Lots of symptoms that I didn't realise were symptoms started to clear up.
FYI I'm also hypothyroid, and it is pretty common to have multiple auto immune conditions.
When your results are back have a look at the PAS section on this site. There's lots of help over there.
My big toe is starting to hurt, so I know I need a jab.
Hi, coincidentally i have very occcasionally had just one toe numb in the past which didnt last very long and then it was fine, i didnt really give it much thought but maybe that was the first sign. thanks
definitely look into b12 deficiency- b12 serum can be within range and you may be deficient anyway. You can’t overdose on B12, so I would test it out and see if there’s an improvement- it can take a while, especially if this is what’s caused the neuropathy. In terms of blood tests you can look at MCV rate - if that’s going up through the range that can be an indicator too. Good luck
Also suffer with numbness of some toes and part of sole of foot. Had it off and on for years, saw GP, who used a pin to test and no further action, now is persistent so heading for upping my B12.
Hope yours resolve.
Also get the muscle twitching when I have overdone things
I have had numbness and pins and needles in my feet and muscle spasms for years. Eventually got referred to a neurologist who did a full nerve conduction study which showed as normal. Now thinking about next steps.
hi as above check b12 etc but have you considered salt deficiency? Symptoms last 6 weeks- could be in line with warmer weather and as you are so active maybe losing essential salts in sweat more than you have in past?? Just a thought!
Another thought is Magnesium, do you supplement with any? Hypo can make absorption impaired as you know and the exercise you do could be using more resources... Found this that implicates nerve repair and magnesium.ncbi.nlm.nih.gov/pmc/articl...
I was drawn to your comment because I’ve recently been diagnosed with graves and started ptu a few months ago and me feet are constantly tingling! Think it’s actually from the knees down but mainly feel it in the feet. How bizarre! Sorry I’ve no advice, I’m new to all this. Hope you find answers
Get a through check up. I started with numbness in my foot and pins and needles, then started to get pain in my ankle and leg. One day I was sitting watching Netflix and sneezed and found myself in incredible pain. On admission to hospital an MRI found a hairline fracture of the base of my spine which had started compressing the sciatic nerve. I have NO idea how the fracture happened, as I am very fit and active. It has taken me months to get back to normal. Neuropathy can also be a sign of B12 deficiency as someone said, and diabetes, amongst other conditions. Don't just concentrate on the thyroid.
Karma1955 'Don't just concentrate on the thyroid.'
I thoroughly endorse this. In fact, I'd go further and reiterate what I mentioned above. Which is to get tested for the obvious possibilities of Thyroid, B12, Vit D, Daibetes etc. And if those all come back ok, then consider that the cause may be more physical and get yourself to a GP asap.
Have you ruled out any compression in spine (discs or sciatica nerve etc ) or had any injuries from your sports?
I’m just looking at this from a different angle here, also any other underlying conditions you may have that can cause peripheral neuropathy eg Diabetes.
Obviously the B12 and/or Iron deficiency is a good place to check.
I had a thoracic disc bulge hitting my spinal cord it cause temporary paralysis (paraplegic shock) it subsided quite quickly over few days but took a week or so to recover properly it caused foot drop with no pain what so ever (there lies more danger I was told by orthopaedic neurosurgeon as suspected cauda equina as my bowels were a problem also) . I just turned over in bed which obviously this type of injury shouldn’t happen, it was found I had ridiculously low iron Ferritin B12 Folate and Vit D and after various further tests I found I had coeliac disease (asymptomatic- hence the low vitamin status) Hashimoto’s and pernicious anemia… I was left for couple of years with tingling burning in my left side which only went after getting my levels in upper ranges. I will add I used to get restless legs prior to the disc situation but my levels were dire single figures for Vitamin D double figures for B12 so extremely low… obviously 12 yrs on my levels are great now but just shows how important especially collectively these nutrients are, and we take for granted as being ok as we eat a good balanced diet but something underlying can be the cause. Don’t just think as you eat well all is well like my situation… I had no digestive problems to know I had coeliac disease otherwise quite active thinking I was quite well.
Hi, no injuries, i dont think i have any back issues at the moment, well, none that i am aware of.
I will check for diabetes as well as all the other very helpful suggestions on here, B12, Ferratin, vitamins etc, i better get bloods done to cover as much as possible.
I appreciate that just because i eat what i think is a healthy and nutritious diet it doesnt mean i am absorbing to the extent i should be but i think that whilst things seem to have been ok up until now i have not given as much thought to absorption as perhaps i might have done.
Hi I have been suffering with burning feet and numbness going up my legs now and restless legs and twitching for 9 years. I eventually saw endo three months ago she said it had nothing to do with thyroid could be age related!!! ( I’m 72 now) She was very dismissive and I felt she didn’t like the fact I was part of this group!!!I saw neurologist twice and nerve conduction test came back fine. He said it could be small fibre problems but can’t test for that. My vitamins b12 was below 500 so I was at first given b12 tablets but when it got to 900 doctor said it was too high so took me off them!! After talking about this with this group I’ve started b12 again and am in process of getting b complex to start next week(can’t get either brands here so where is good place to deal with online) I would like to try magnesium but I don’t know how much to take and can I take it with the b complex? I know how you are suffering, people do not understand how uncomfortable this numbness and burning is especially at bedtime. I do hope you get help soon and would like to know if anything helps!
Igennus Super B available from Amazon or Thorne Basic B from iHerb.com
300mg Magnesium would allow for some still in your diet, there are different forms of magnesium so often a complex is a good option, take a look... healthline.com/nutrition/ma...
Thanks for sharing Judy, a dismissive Endo, no surprise there! i'm going to have a full spectrum of bloods done to start with, there are so many knowledgeable, kind and helpful people on here, a real and serious lifeline, re how much magnesium to take with B Complex i don't know but i'm sure someone will help you with that on here.
Hi, NHS can test for small fibre neuropathy with thermal threshold testing, that is how mine was diagnosed. Maybe you are not in UK. But my neuropathy is responding to B12 injections. There are many possible causes and this can be one. Getting serum B12 up may not make any difference to your symptoms, it depends where the problem with metabolism lies. The only way to be sure that B12 cannot help is to have a trial of injections and it not make a difference. Some can use oral and some cannot, some can for a while but progressively less so and you have no way of knowing for sure.
I just read your post my husband got the same thing he hasn’t got any problems with his health at all but he went to the GP she has referred him to see Neurophysiology for EMG and NERVE Conduction tests in August. So perhaps it would be worth paying the GP a visit. Wish you well.
hello sooo many replies for you I’ll be brief and it may have been covered… your T3 is quite low so it maybe worth taking some separately as your likely a poor convertor? I have numbness in the balls of my feet and sometimes my toes as well as down my leg. I’ve been told fat pads can slip in your feet (from a podiatrist) and hence cause pain and numbness. You could try visiting a qualified podiatrist (not a basic chiropodist) for some advice and diagnosis if you u derstandably orefer to avoid the gp. I t erestingly I told one gp I was treating my 5hyroid privately so they’ve let me get on with it 😉
Hi, thanks for letting me know about your numbness and i might well visit a podiatrist but i think it best to cover the bases first with full spectrum of bloods to start elimination process.
It looks like i am a poor converter, I have occasionally thought about adding T3 but i have always been ok so far really on just T4 and it can be quite challenging to try and balance with T4, also i am taking SlowDragons original response and advice on board about testing all other areas first and attempting to achieve optimal vitamins, B12 etc before considering adding T3. thanks
thanks for your post! I have this too and my toe nails haven’t grown for a year. They diagnosed me with FND functional neurological disorder for the tics, so maybe look into that? The pain, swelling and numbness has pretty much gone now thank god. I sprayed tea tree and magnesium oil on it every night, so maybe that worked, but my nails still aren’t growing, except one and the new nail bed is yellow
I’m going through the same thing. Started with left big toe then all the toes, and now it’s on the right foot also. I’m going to have the Doc run another TSH and T3 & T4 . I also always had my feet out from the covers at night. Now I am wearing socks. I was originally 137mcg, then with weight loss 125mcg, now 100mcg. May need to go back up, unless there is another reason. Also my diastolic BP has been dropping below 60. Getting old sucks ! LOL
Hi Krazy, my gut instinct is it isn't thyroid as i have no other symptoms (apart from the muscle twitching) that i would normally expect if i was too high or too low on T4 but i could certainly be wrong about that..
the numbness is currently most noticeable in both feet and toes with a rippling/shimmering effect up and down my calves and front of lower legs, but it also now appears to be in my lower arms and wrists as well now along with a few finger tips, i will start with a full spectrum of bloods, thyroid, B12, diabetes etc, hopefully that will reveal the culprit! it is a bit concerning but it is also a little comforting that i'm not the only one on here with similar symptoms and i have received lots of very helpful advice as to how to proceed to attempt to identify the cause, which bloods etc.
I totally agree, this getting old Marlarkey is No Good at all!
It might be all the cycling you are doing. If I remember rightly "piriformis syndrome " can be made worse or possibly , caused by actions like cycling. You say you cycle 5 times a week. Look it up on the internet. I think a nerve is being tweeked and cycling will make worse. In some people there is not much space for the nerve. There is an exercise you can do from the internet and it will be obvious when you do it if piriformis tight or pinched.
December 2019, visiting dad in hospital, I got out of the car one day and thought that my socks had slipped down inside my boots and got bunched under the toes. That was the start for me. It built from there. That weird bunched up feeling under my toes, to a numb big toe ball, to numbness under all my toes. Both feet exactly the same.
Long story short it increased and started with painful sensations. I would lie in bed feeling like I had just run through a field of stinging nettles in bare feet and legs. Then it became stabbing pain. Difficulty walking sometimes. A sensation of not knowing where the ground is because of the numbness but all with pain and the soles of my feet are highly sensitive so soft carpet and fluffy slippers feel like sand paper of course grit. It's horrible.
The pain in my feet keeps me awake or wakes me up. It's worse in the morning sometimes but becomes more insignificant when I get up. Evenings are horrible. Restless legs and feet and pain and heightened sensation.
I have never found a cause. I've been self injecting B12 every other day for many months now and sadly it's made no difference. I'm hypo and for various reasons I'm not optimally treated although I'm working on it.
GP has checked my back for trapped nerves. Not that. I can't walk on the floor without footwear. I need it to give me a firmer grip on the floor. Bonkers. I'm constantly working on my vitamin levels. Haven't given those any let up in years so it's not that.
Hi, thanks for sharing your story, i'm sorry you are struggling like that and have never got to the bottom of it fingers crossed you will be able to find the cause at some stage, its frustrating not being able to identify a reason so you could hopefully be able to treat and improve matters.
quite a number of people have responded on here regarding having similar issues with numbness and tingling in feet and toes etc but no one who has also mentioned their arms and fingers which i have started to notice, all a bit concerning, hopefully i can find the reason why and be able to sort.
I was losing feeling in my right arm and hand in 2013, and also losing feeling in the soles of my feet. I asked the G.P. to check my vitamin B12, as having researched my family history now knew my great grandmother died of pernicious anaemia. This was before B12 supplements were available and patients had to eat raw liver. I was right to ask. I was B12 deficient. They said I didn't have pernicious anaemia. I supplement B12 at high doses since then. Unless my B12 is at the top, or over the top of the range, I lose feeling in the soles of my feet. I have had problems since when B12 was well over range. I was not aware until I joined the forum that B12 does not work for you without adequate levels of folate too. The G.P. didn't tell me in 2013 that my folate , at this time, was only 0.1 into the bottom of the range. I also discovered from the forum that you need to supplement all the B vitamins and not just B12 or folate in isolation. If short of other B vitamins B12 may not be activated.
The feet, arms and fingers numbness and tingling could most certainly be lack of B vitamins, especially B12, which needs folate and b2 to work. It could also be nerve entrapment , which is common in hypothyroidism. In the arms and fingers, it can be carpal tunnel syndrome or/and cubital tunnel syndrome. I have had both before diagnosis that I am hypo. I also have a history of sciatic nerve entrapment and eventually had to have surgery to shave a prolapsed disc which was trapping my sciatic nerve for a great many years prior to diagnosis of being hypo. An absent ankle reflex is also a sign, which I had had since at least 2001. One theory on the forum for nerve entrapment when hypo is that the presence of mucin , a hypo symptom, can be responsible.
I can also identify with the constant plantar fasciitis hypo can cause and have had tingling , twitching muscles and loss of feeling from the prolapsed disc. Try leg raises as a test for possible disc prolapse.
I read one of the patient information leaflets for T3 recently by looking it up on the internet. I can't remember which brand it was. It actually stated that to see if T3 is working for you , you should check to see if your absent ankle reflex has been reinstated. An old-fashioned way of checking for hypothyroidism was to check the ankle reflex. It surprised me to find a PIL for T3 actually stating that you should do this.
Your b12 and folate being too low is a possible answer, and your poor conversion might improve if they needed addressing. If these turn out to be optimal, then since your conversion is poor, adding some T3 may be the answer. Hope you get it sorted out soon.
Mine started in arms and hands 20+ years ago, then progressed to feet and up legs. The knees went numb most recently and they are becoming less numb and returning to painful and pins and needles with B12 injections. I've also noticed that feeling is returning to my spine area which I hadn't even realised had gone.
To be honest, most of my twitching and jumping was arms and legs rather than torso, although I had that too from time to time. Magnesium was very helpful to me, I spray on the skin each night.
As per conversation with my GP "low thyroid can cause some nerve damage when it's getting progressively worse!" I have same kind of symptoms, along with what feels like numbe
it started in both feet and toes and now i have it in arms and fingers/tips, all a bit worrying but will start with full bloods and take from there..could well be peripheral neuropathy amongst quite a number of other things
These are great comments you have some great info now. You sound like how I started 1 1/2 years ago with peripheral neuropathy. The neurologist tested me for numerous vitamins: B1, B6 (both forms), B12, folate (B9), copper, zinc, I tested in the low end for B6 and B12. I saw great improvement with oral B12 in the beginning, and could use a mouse without padding after a few months. I hade more improvement with injections but the neuropathy is still not 100% gone. So in the opposite way of you, I'm going to ask about Thyroid on my next visit. If I had to do it over I'd take way more oral in the beginning and start injections asap. I should have taken 5-10000/day untill I could muster injection supplies. B6, iron, and folate are B12 cofactors so have those 3 tested as well. There's also something with homocystine that should be checked but I can't remember the relationship at the moment. Also, if you do show deficiency see the B12 Society in the UK, the related Facebook group B12 Wake Up and read the UK NICE Guidelines. Good luck to you!
Yes, lots of very kind and helpful people on here, lots of good advice and suggestions, many thanks for sharing your story, its interesting and informative, best of luck with asking about your thyroid on your next visit. best wishes.
Hi, I have bouts of numbness and pain in my fingers. The last time was 4 weeks ago. It went away eventually still have the joint pain in my left thumb mostly. I was diagnosed with graves 8 months ago.
Just to add though the first time I had pains in my fingers was when I had covid, it was my first symptom. Maybe it was the thyroid from then but who knows.
I hope you get to the bottom of the cause. It really is no fun.
Hi, thanks for sharing, it's numbness without pain at the moment, who knows, maybe that is next.
It's not the easiest task to say the least trying to unpick what might or might not be the cause of issues and obviously it can be multi layered, its no fun at all. i hope the joint pain subsides for you,
Hi SPD1! My life was turned upside down when many crazy symptoms such as you are describing came on soon after my Hashimotos diagnosis. After a year of seeing many specialists to try to figure what was going on, I was diagnosed with Small Fiber Neuropathy. It may be something to look into as many doctors are not familiar with it. Best wishes to you!
Hi there, many thanks for letting me know about that, i have taken your point on board, the differing forms of neuropathy are definitely something i shall be investigating.
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fingers crossed you will be able to find the cause at some stage, its frustrating not being able to identify a reason so you could hopefully be able to treat and improve matters.
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Headaches, dry mouth, cold sores and burning feet plus latest Test results
Numbness 
Advice please 
