Diagnosed in 2002 and haven’t seen an endicronologist since. 2016 started with burning feet but endo wouldn’t see me because my levels were normal. Feet now numb, have aches and pains from back downwards so sending me to see orthopaedic surgeon.. Been told my nails are brittle, my skin is dry and itchy and my bp has risen. In August my TSH was 0.19 so dr put me down to 100 dose then in October level was 9.56 so he has raised it to 125 again. Will be tested again in three weeks. I have so many symptoms even though T3,T4 etc are normal and the aching legs are really getting me down. The only time I can talk to a dr is if the dosage needs changed so I don’t know how I can ask for a referral to see the endo. I’m sure the ortho will say I don’t need a hip or knee replacement as I think the pains in my hips are all to do with my thyroid. They have put me on antidepressants three times which I have gone along with even though I knew I didn’t need them! All I want to do is to find out what’s wrong with me. Has anyone else experienced similar things?
Burning feet and aching legs: Diagnosed in 200... - Thyroid UK
Burning feet and aching legs
In a previous post you were advised about vitamin deficiencies. Did you manage to get your levels tested? healthunlocked.com/thyroidu...
Sometimes 25mcgs is too big a jump for some of us so dropping or increasing by 12.5mcgs is the way to go. use alternate day dosing if necessary.
If vitamin levels aren't optimal then we can't use our thyroid hormone properly. You need test results for ferritin, folate, B12 and D3.
I agree, some of your symptoms sound like very low B12 so you really need to get that tested. If GP won’t do it then you need to go to one of the private companies like Medichecks.
Thanks for your reply, I had my B12 checked and that was low but still within norm. Dr gave me some to take but then it went too high so we decided it wasn’t B12. I’ve also had nerve conduction tests done but large fibres were fine so they said it could be small fibres which you can’t test for. Then tgey thought it was trapped nerve in back but neurologist said that was fine too that is why I think it’s down to my thyroid as other things have been checked . I read that levels can be fine but still can have symptoms and need different meds
I have all those same symptoms. It’s horrible and definitely not from lack of B12 in my case. I’m sure it’s to do with T3/T4 ratio
Hi Judy! I am so sorry you are not getting answers. I have Hashimotos but am controlled well. Based on your symptoms and current test results I would look more into small fiber neuropathy. There are very few doctors that specialize in this but a neuromuscular neurologist is most knowledgeable with it. The confirmation test in the US is a skin punch biopsy. If this ends up being your diagnosis, there are several tests that can be done to try to find your cause. If you find the cause, you can treat it. I have Small Fiber Neuropathy but so far have not found my cause but there are a lot of specific vitamins that help with this. There is a fantastic Facebook support group that has helped tremendously with information. Best wishes to you in your journey! 🤗
Thanks for that info. Small fibre neuropathy was suggested to me by a neurologist who said the large fibres were fine. He said there is often no reason for it and they can’t test for it even though I had heard of the punch biopsy I don’t think it’s here yet.
I've been researching small fiber neuropathy all day since you listed this and I have to say WOW. This can very easily explain a lottttt of my issues. My doctor had said a few months ago that it sounds like my nerves are firing off, but didn't know the triggers. I just found out that a lot of things can trigger it. Hypothyroidism, gluten, sugar to name a few.
you say that your T3 and T4 are normal but what your doctor calls normal is not to be trusted. I suffered with burning feet for years, until I found this site and after insisting on full blood testing, discovered that my T3 was under range and T4 over range - a classic example of not converting T4 to T3 properly. I asked for T3 straight away but had to pay for a private endocrinologist, who prescribed it for me. I paid for the first prescription and then my practice agreed to prescribe it, although that is more difficult now with many practices. I suggest you get full thyroid testing and post results here. You need at least free T3 and T4, TSH and thyroid antibodies. I hope someone else will add whatever else is necessary but I was diagnosed on just the low T3 result.
did the burning feet stop after you started T3?
No I was never given T3 they said my levels were in the norm
yes, the burning stopped and many other symptoms I had not realised were connected with low T3 also improved.
do you mind me jumping in and asking if your burning feet were worse after you had been stood up / walking and bad in bed ? Thank you 🙏
Did your burning feet start before you were put on levo thyroxine or after ?
The burning started after my thyroidectomy but not until a few years later of being on just thyroxine. Being not familiar with the horrors of having no thyroid and innocently believing the fairy tale of “ the little white pill that would take the place of my thyroid”, it did not for ages occur to me that the burning feet and having no thyroid were connected. It was a client who opened my eyes and told me to read up about T3. I then asked my GP to test my T3 and surprise, surprise, it was well under range. He told me he could not give it without my seeing an endocrinologist, so I paid privately and obtained my first magical prescription. My GP now gives it on prescription.
Absolutely ESSENTIAL to test B12, folate, vitamin D and ferritin
Request GP test vitamin levels NOW
If GP is unhelpful, test privately along with thyroid 6-8 weeks after last dose change
What vitamin supplements are you currently taking?
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
NHS easy postal kit vitamin D test £29 via
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
Optimal vitamin levels are
vitamin D at least over 80nmol
Serum B12 at least over 500
Active B12 at least over 70
Folate and ferritin at least half way through range
thanks for all this info. I have just had my vitamin D tested this morning, folate etc were fine when done in a full blood test she said.
ALWAYS get actual results and ranges
GP will only test for deficiencies
We need OPTIMAL vitamin levels
Please add actual results and ranges
have you got results yet?
Optimal vitamin levels are
Vitamin D at least over 80nmol minimum and frequently over 100nmol is better
Folate and ferritin at least half way through range
Serum B12 at least over 500
Many, many patients on levothyroxine need to supplement vitamin D and vitamin B complex continuously to maintain OPTIMAL vitamin levels
But always get results before starting any supplements
If Ferritin is below 70, yiu need full iron panel test for anaemia
Had vitamin D checked and it was 59nmol and that was after a week in tge sun at 27 degrees. Waiting to see if dr gets in touch today
So vitamin D is too low, but not low enough for NHS to treat
Down to you to self supplement to maintain at least over 80nmol minimum
U.K. Government recommends everyone supplement vitamin D October to April
Thyroid patients frequently need to supplement continuously all year.
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Likely to need higher dose vitamin D in winter than summer
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
Another member recommended this one recently
Vitamin D with k2
amazon.co.uk/Strength-Subli...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Great article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
When were iron and ferritin levels tested
Likely Folate and B12 are too low as well
Request GP test or test privately yourself
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.
Burning feet syndrome
racgp.org.au/getattachment/...
The following might also be of interest:
Burning Feet
webmd.com/diabetes/burning-...
Riboflavin (vitamin B-2) and health
Hi Judyrabbit. I agree 100% with Hennerton. Earlier this year I had burning feet particularly the soles of my feet and in winter my toes went numb. It was worse in colder weather. I am just completing a 3 month trial of T3 prescribed by Endo. I no longer have burning feet ! And since T3 I now have no numbness in my toes. I had the DIO2 gene test for which I was positive paid private through Regenerus. £88. Armed with this Endo prescribed T3. He persuaded my GP practice to cover cost. I see Endo again on 22nd Nov. Prior to this my GP labelled T3 as witchcraft supplied by quacks! I can tell you my Endo did not have a broomstick or a Black cat or quacked !!. What he did have though was 2 ears which he used for what God made them for. My advice would be to do Gene test 1st and then insist on revisit to Endo and take advice from the other good people on this website who have the experience of living these terrible symptoms. I am not there yet. I still have other symptoms that I believe need 'tweaking'. I will just post my test results on here and ask for advice from the real experts!
I am also having symptoms of tingling/numbness in feet and intermittent in hands. Last time I had this my levels were very low. However my Dr doesn’t think it is a symptom of under active thyroid and has left it at that.
Hi there, I don’t have thyroid problems but I do get burning feet and an uncomfortable sensation in my calf’s. Had it last night funnily enough, had 3 hours sleep and now have to face my day looking afterMy 16month granddaughter. My advice to u is to start taking supplements, potassium and magnesium Malate. It’s marvellous for those two problems but u must take the Mag Malate not any of the others. I also recommend eating a banana each evening, that helps me too.
Yes I'm like you. Gp ignored my problems so am just suffer I'm 77. My feet I'm sort of told its neurothapy. B12 injections 3 monthly have not noticed. Vit d ok.
Following with interest as I have had numbness and tingling in my feet for the last few years, now starting in my hands too. I've been refused T3 but take a high dose of Levo to bring my T3 up (resulting in v suppressed TSH, top of the range T4 and mid-range T3). B12 lowish though in-range but have had specific tests for Pernicious anaemia and it has been ruled out. (I'm allergic to cobalt so can't take B12 supplements without extremely good reason). I had low Ferritin but have had an infusion to correct that.
I was referred to a neurologist who says it's a small fibre neuropathy and has advised long term monitoring for diabetes (poss t1) as he says it can sometimes be a v v early sign. He ruled out lupus, MS etc. TBH the medics are all at a loss as to what is causing it though in fairness they have tested me v thoroughly.
Interesting to read about a few similar cases here.
Also following with interest. I have either vasospastic angina or microvascular angina (coronary spasm in the old days). Whatever, numbness in extremities and so-called peripheral vascular disease. All tiny blood vessels. Yes early diabetic symptoms but considering the very close relationship to hypothyroidism - which you actually seem to have - I would guess the likely culprit is the hypothyroidism. Hypothyroidism which may still not be being properly treated. You say yourself your T4 is high to pull up your T3. Who the heck am I to suggest such a thing but having high levels of T4 running around in the system unnecessarily because they won’t prescribe T3 does not seem a good solution. Just having hypothyroidism opens us up to the likelihood of developing diabetes. It’s another one of those circling conditions for hypothyroids along with high cholesterol, high blood pressure, depression, chronic kidney disease, obesity etc. I was very interested in your neurologists comment about ‘small fibre neuropathy’. Another recognised symptom of hypothyroidism. I have waited (in my previous total ignorance) for over twenty years to find out what was wrong with me. In your position, with hindsight, I would not be hanging around for ‘long term monitoring’ for diabetes. Pain brought about by small fibre neuropathy affects exercise levels, which has a profound damaging effect on development of diabetes. Proper balanced medication for hypothyroidism is the key issue (I think) to avoid diabetes (if you are hypothyroid). Off course other issues can always rear their ugly heads but proper treatment for hypothyroidism should be top of the list. Apologies if this sounds a bit angry. It’s where I am at at the moment with rather stupid doctors.
Yes I've had Hashimoto's disease for 30 years plus.
I'm very sorry that's your experience and I understand that many people driven to seek help here feel the same. Personally I think my GP and specialists including an Endo and Neurologist have been very helpful and thorough. I am surrounded by doctors in my family and married to one and to be frank their lives are hell at the moment because the NHS is in meltdown so I'm never going to come on here and bash doctors in general. However the prescribing of T3 is a massive issue and my GP surgery and Endo say it is very very difficult for them to do it. They are happy for me to be on a high dose Levo as it for the most part keeps me well, and are very sensible about treating "the individual not the bloods".
Having read this thread though I might get the private testing done for DIO2 and see where that leads. Like you I'm convinced the neuropathy is linked to my thyroid condition as it was triggered when I had an unfortunate (and luckily short-lived) dose reduction.
Hi. I agree with Csj about the possible cause being due to levo dose. A GP at my local practice reduced my dose a few months ago, against my wishes, saying review in three months. I have only been taking levo for 18 months and my TSH was 161 at the start and I was severely hypothyroid. I don't feel I've found the perfect dose yet. After several weeks I developed numbness and tingling in my fingers and hands and whilst out one day suddenly felt I'd lost sensation in my feet and struggled to walk properly. It was quite scary. I increased my dose with some spare levo I had, only a little and the numbness and tingling has virtually gone. I'm due a discussion on dose with my Dr soon but I will push for the increased dose whatever my TSH and T4 say. Csj is right, treat the person, not the blood test, when it comes to thyroid.
Lulu2607 I too have experienced what you describe plus falling over in a public place. I never want to do that again. The indignity of being elderly, fat and unable to get up without help. You can only imagine what is going through any potential helpers mind. My doctors reply on appealing to him for better treatment. “It’s your age. It’s your weight. It’s your posture.” Helpful? I do not think so!
Thank you for getting back to me. I agree the NHS is in meltdown and there are so many reasons why. I appreciate you have family in there working; probably very hard indeed. However if we all ‘appreciate’ the NHS without commenting on its inefficiencies and incompetences because we feel ‘so thankful’ it’s there; in my opinion we are doing it no favours. We are all involved (and have a vested interest in its survival) in its future and keeping the myth going that it is so wonderful, without fair criticism is not helping. If I believed in conspiracies, as opposed to the downright incompetence of human beings, I would think the government was happy the NHS is on its knees. Off course it could be a mixture of both viewpoints. csj113 it seems to me there is no illness quite like having thyroid issues. It’s in the very fabric of our being. It’s clear that unless one has experienced it (especially if the treatment is not the best) it is impossible to understand living with it. It’s my opinion that doctors have no special understanding of it than the next person who is not affected by it. Lotika wrote a truly wonderful piece just a few days ago on the forum. It’s well worth a read and bringing it to the attention of your medical family. I am aware I do not sound sympatico but I can assure you I most certainly am. I hope your genetic testing gives you the info you need.
I am so sorry you are on this journey. I have Hashimotos & Idiopathic Small Fiber Neuropathy. Not sure if you have tried anything for the SFN, but if you get with a good neuromuscular neurologist, they can guide you well. One of the vitamins that help many is Alpha Lipoic Acid. I actually take the R-Lipoic Acid . It doesn’t make it go away completely but makes symptoms manageable for me. Best wishes!
I had burning down my leg with tingling not really aches as such and I was severely deficient in B12, after a good year on injections and still have injections my levels high now but the sensation went.
I have periodically had trapped nerves resulting in numbness too which can feel similar… but I’m aware of neuropathy can occur with a few conditions especially high insulin.
Interesting re others comments on low T3.
I have very similar symptoms and don’t yet know the answer. Had similar nerve conduction test and all fine, like you, and will get results of mri soon but I’ve had that before and nothing crazy wrong with my back. I’m just changing my meds as an experiment - raising Levo and lowering lio over time - let’s see if that helps. Think Thorn b vits help but no idea what else.
My hips get sore when I walk for more than just around the house. I have a burning sensation down the left thigh with numbness. I haven’t thought that it might be associated with hypothyroidism. Interesting 🤔
Like you, I have experienced the pains in my legs, aching joints and back pain. The leg pains were the worst especially at night when I would frequently be awake until 3am. I was living on pain killers and could hardly walk. My NHS endocrinologist said ‘your symptoms are not thyroid related, see your GP’ and promptly signed me off, telling me ‘my job is done’.
In sheer desperation I saw a private endocrinologist- a colleague in the same department as my NHS one- and more than 18 months later and several thousands of pounds lighter I began to feel a lot better. He prescribed T3 and I was able to prove to my GP that I had undertaken a T3 trial and was eligible for T3 on prescription. Fortunately I had the means to do this otherwise two years down the line I would still be in the same position. T3 did work for me thank goodness but what happens to those who can’t afford to go private? I still have the double vision sight problems associated with Graves and now cataracts but I’m due to have the latter sorted in the next few weeks, privately of course!
Please look into Small Fiber Neuropathy.
Shortly after my thyroidectomy I started suffering with burning feet and hands (labs were perfect). I was sent to see a neurologist who diagnosed me with small fiber neuropathy (with no known cause) I was mad I was already having a hard time walking felt like my Achilles tendon’s were going to rip in half every time I walked or stood and now burning skin sensation that’s maddening and painful…..I don’t know why but the burning sensation did eventually go away took almost 2 years and I was finally diagnosed with Psoriatic Arthritis (Enthesitis) which explains the tendon issues.
Judy, I’m on duloxitine, an antidepressant, for the nerve pain in my legs, and it helps. My legs hurt all the time. I’m in a recliner with my legs up right now. I can’t do half of the things I used to do. I’ve been diagnosed with peripheral neuropathy which began 18 years ago from a bad case of shingles. I hope you find some answers. In the meantime, try soaking in an Epsom salts bath. The magnesium in it may sooth your legs. There is also a magnesium leg cream which I just purchased for myself. I tried magnesium pills but they’re too much for my stomach and I was told to try the topicals instead. May be worth a try for you, too!
hi. Re hips. Iv had pain in groin ten yrs now I'm due op The general condition for hip spurs, wear etc is pain in groin area. I rather think pain on outside of hip can be hypo related similarly to other joint pains
Xray can help diagnosis. Difficult I know as some hips look atrocious in X-rays yet cause no pain
My pain in groin has subtly changed to extreme stiffness Used a sock puller for ages ! Came to conclusion I do need to have new hip finally
Good luck always a way
I'm Not the girl who scooted around & tap danced jiving etc, but hey now play sax & ukelele as long as wrist pain manageable
We can!!!
yes and it was B12 deficiency! I also have Hashimoto’s hypothyroidism, b12 (pernicious anemia)
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