Hi. I’m on 150mg Thyroxine a day and have been for about 10 years. I’m type 1 diabetic since childhood, epileptic and coeliac. My feet are so sore now I can’t walk. The diabetic nurse said it wasn’t neuropathy as I have a good pulse and reflexes. They burn on the balls of the feet after 10 minutes, then cramp, then numb. They also tingle along with my hands. I’m seeing a private podiatrist on Monday after trying lots of inserts, trainers, Aloha Lipoic Acid and vitamin B complexes. I take vitamin D at a high strength with calcium due to my epilepsy medication, but always at least 4 hours after the thyroxine. My test in February said TSH 2.0 but no idea what that means. I’m always cold and tired. My folate was ‘out of range’ and above. Any advice would help me 😊
Burning feet, tingling, cramp : Hi. I’m on 150mg... - Thyroid UK
Burning feet, tingling, cramp
A TSH of 2 means that you are under-medicated. It should come down to 1 or under. But, just testing the TSH is totally inadequate, so I imagine that your doctor knows little about thyroid.
My advice would be to get full thyroid testing privately:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
Did you have your B12 and folate tested before you started supplementing?
That’s interesting. Yes, as part of my diabetes check ups with a consultant. I’ve no idea why these results said normal but the folate was out of range. I’m veggie and assumed it meant I was eating a lot of green veg but also it means a lack of B12. Confused. Glad you mentioned that 2 is wrong. I’ll ask my GP or one I trust. X
'Normal' doesn't actually mean normal, it just means 'in-range'. Doctor know little about thyroid and just assume that if a result is in-range, it has to be alright. They have no understanding of the subtleties of treating thyroid. So, yes, you possibly need an increase of 25 mcg and a retest six weeks later. But, private testing is still recommended. You won't get all the necessary tests on the NSH.
150 mcg levo is quite a decent dose. So, unless your get your FT4 and FT3 tested, you won't know why your TSH is too high. It could be that you're not absorbing your levo very well. Or it could be that you have a conversion problem. But, unfortunately, doctors just don't care about either.
If you're veggie, then it's not surprising if your B12 is low. But, if it's very low, testing for Pernicious Anemia should be done. I'm not well up on diabetes, but I think type 1 diabetes is autoimmune, isn't it? So, it wouldn't be surprising if you had Pernicious Anemia and Hashimoto's Thyroiditis as well, which are both autoimmune.
Yes and was diagnosed as coeliac last year - but it had gone undiagnosed for a long time apparently. Maybe I’ve not absorbed my levothyroxine. I don’t know. Hmmm. Thank you. This does sound like a good reason for my sudden foot problems though. Thanks for taking the time to answer in depth 😊
HI there so sorry you have these problems it must be awful for you especially in this hot weather.
I wonder if you have ever been tested for lactose intolerance as that would mean you would not be absorbing your thyroid meds. Also have you been tested for B12 deficiency as burning feet can be a symptom of this deficiency together with B6 - hope this helps.
Just mention ,I had numb feet as you describe , with help from this forum I tried B12 and B complex . B12(sublingual )
This sorted it for me , maybe it will be the answer for you ,
The OP has already said she takes B vits. 
Yes but only in the last week. Taken because of all of my conditions. The podiatrist said they can take a while to kick in but again in February the result was ‘normal.’ 🤨
Yes, but as I said above, 'normal' doesn't actually mean normal. It just means 'in-range'. And, the problem is, the ranges are far, far too wide. You can be deficient in something and still be 'in-range', so it's classed as 'normal'.
Thank you. My folate is 24 so out of range. Practice nurse is calling me back. I can feel a long battle ahead 😊
I don't think an over-range folate is any sort of a problem. But, don't expect a practice nurse to know anything much about nutrients.
Yes she was fairly dismissive but did say I should ring my diabetes consultant as he’d know more. Kept saying ‘but it’s in range.’
Exactly! And that's all they care about: being in-range. As far as nutrients go, you're far better off getting advice on here than consulting a nurse or a doctor. B12 should be at least over 550, in the serum range, over 100 for an active range. In Japan, the serum ranges starts at 500! And 500 is considered very low.
625 serum 😊
When was that result? Before you started supplementing B12? Or since you've been taking B12?
I was taking a multivitamin that included B12.
OK, and did that multi also contain iron?
Yes
In that case, you won't have absorbed much B12 from the multi - if any. Iron blocks the absorption of vitamins. It should be taken two hours away from everything, except vit C, which helps with absorption. (That is just one of the many reasons NOT to take a multi-vit.)
So, if that was your one and only B12 test, you weren't deficient. So, unlikely that the burning sensation is due to low B12.
Agreed - one of the symptoms of low B12.
A sensation of burning under the soles of the feet (even when your feet are cool to the touch) and tingling in the hands (carpel tunnel syndrome) are often hypothyroid signs, as Greygoose says. I've had both, though thankfully not extreme.
You need a referral to an endocrinologist, although many of them don't seem to understand thyroid issues either.
That sounds familiar. My diabetes consultant is also an endocrinologist so hopefully I’ll be due to see him soon. He also has an interest in vitamin D, which I’ve been on for about 4 years due to epilepsy medication blocking it.
He'd have to be an endocrinologist to be a diabetes specialist. And that's the problem. Nearly all endocrinologists are diabetes specialists with next to know knowledge of the rest of the endocrine system. And, some very weird ideas about the thyroid. Finding an endo that specialises in thyroid is next to impossible.
I have found when my fingers and toes/ feet tingle and burn I need my b12 injection.
As a vegetarian, with Hashimoto’s and coeliac...you are going to have to work hard to maintain GOOD vitamin levels
Probably need to taking separate sublingual B12 lozenges as well as Vitamin B complex
Jarrow B12 1000mg good option. You may need 2-3 per day initially.
Also
Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Perhaps only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
b12deficiency.info/signs-an...
academic.oup.com/nutritionr...
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Often burning feet starts a few weeks after starting on high dose vitamin D
Low vitamin D and low B vitamins may be linked as explained here
drgominak.com/sleep/vitamin...
In YouTube video when Dr Gominak talks about vitamin D levels ...vitamin D at 40ng/ml (USA units) is equal to 100nmol (UK units)
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
Just testing TSH is completely inadequate
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
As vegetarian it’s very important to regularly retest iron and ferritin
Eating iron rich foods like pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
Links about iron and ferritin
irondisorders.org/Websites/...
Helpful post about iron supplements and testing
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
drhedberg.com/ferritin-hypo...
have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
It was the diabetes foot check nurse who said it wasn’t neuropathy, but was reluctant to take a guess at anything else. I’ve just requested a call back from my GP as I can’t get an appointment. I’ll tell her what I’ve discovered here ( plus the podiatrist when she did a phone consultation mentioned thyroid ) and ask for investigations to be more thorough. It’s really affecting my quality of life and confidence to do my job, so I’m really grateful for everyone’s advice on here. I feel I’m getting closer to some answers now ❤️
Yes I will. I’ve always assumed neuropathy as I’ve been diabetic for 44 years but it’s always come back negative so far. It’s odd as my hands are tingling too. I’ve Dupuytren’s contracture in my hands as well, so thought maybe that was happening in my feet due to two small nodules, but it feels like a more systemic thing where my whole body feels just yuk!
Likely you have low Ft4 and Ft3 with TSH that high
First step is to get full thyroid testing ...large numbers of people on here forced to test privately to make progress
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
Come back with new post once you get results
If your B12 is below 500 it can become a neurological issue. As you are supplementing, testing of B12 will show a skewed result unfortunately. There is a link with B12 and epilepsy - I once found a research paper about it when looking for someone else.
I have neuropathy from mid-calf down and self-inject B12 weekly. I do not have a Terminal Ileum where B12 is metabolized. So being a coeliac will impair this process too. Injections may well be the way to go ...
Oh yuk, just had one of those for suspected uterine cancer. Not pleasant! Just been reading up on Levothyroxine too - I hadn’t realised it can be affected by caffeine, calcium foods and soya. We roast coffee so drink a lot, though I drink decaf tea. I don’t drink Coke. I eat quite a bit of cheese as being diabetic and coeliac it’s my happy food 😊 I have soya as I’m coeliac and veggie. Maybe....I had a nerve conduction test about 2 years ago and it came back negative. Have you had that too? That was uncomfortable. Do you take pain killers for sfn? I was given Gabapentin by my gp when he thought I had neuropathy 4 years ago. Turned out my vitamin D was 4 and I couldn’t walk ( due to epilepsy meds ). When I returned to him with this pain this year and mentioned I’d had Gabapentin he said ‘who gave you that? Horrible drug.’ 🤨
That’s how I was. Fine at first but as the pain crept back they’d up the dose. I’d become really foggy headed and would get my words in a muddle! They then tried Pregabalim as it’s meant to be more sophisticated with less side effects. No different. The worst one was Amatryptaline - spent a whole weekend in a coma on that! Ha ha. Actually acupuncture was lovely. Best result but expensive and short lived x
When people post about the feeling of burning, especially of feet, I quite often post this link.
It is getting on a bit but nonetheless it does give an overview of the causes of burning feet. And I have not seen a more recent article which I could use instead.
Burning feet syndrome
Wow... loads to take in but I’ve learnt a lot today. My Dad is also type 1 and has always declared that we know more than any doctor as we have to! The internet has helped me to cut to the chase with diagnosis’s several times, which I know is probably irritating. Having a recent op I said I didn’t want an anti sickness drug with the anaesthetic as it affected my blood sugars, being a steroid. Sure enough they hadn’t heard of that and gave it me anyway. Stuck with very high blood sugars a week later....
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