I have been on levo for 20 years. In 2016 I started with burning feet. I saw this could be due to thyroid but consultant wouldn’t see me as my blood levels were fine. I have had hundreds of tests since on spine hip etc and although I have osteoarthritis they say is not bad enough. My feet are now numb although the nerves are fine. Sometimes feet are fine for a while then ,as now, they will start burning again and I have knee swelling, itchiness, leg and muscle pain . I also often have a low temp of 34.5. The dr laughed at this and said I would have hypothermia if it was that low but I know people with underactive thyroid scan have a low temp. I just want to know what is wrong before the nerves in my legs and feet are permanently harmed but the drs just keep putting me on anti depressants. Last time my bloods were done he raised my levo from 100 to 125 and I was fine but the burning is back . I feel as though it is all to do with my levels, could this be correct and has anyone else had this problem?
Thyroid symptoms : I have been on levo for 2... - Thyroid UK
Thyroid symptoms
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/...
racgp.org.au/afp/200312/200...
The following might also be of interest:
Burning Feet
webmd.com/diabetes/burning-...
Riboflavin (vitamin B-2) and health
Hi Judy rabbit, I'm sorry to hear that you're not feeling too good. Do you have any blood test results that you can share with their ranges so that people can have a look at them.
It is especially important to have vitamins and minerals at an optimal level for our thyroid hormones to work optimally.
It is important to know the levels of Vitamin D , Vitamin B12, folate and ferritin . If you could post those people will be able to comment more accurately.
You should be able to see your blood test results online or get a copy from your GP , as you are entitled to see them.
If you do not have these or your doctor won't do all the above tests , then it will be worthwhile getting these tested privately . The thyroid hormones that need testing are TSH, Free T4, Free T3 alongside the vitamins above. 
Welcome to forum
Often when GP says your thyroid levels are ok it because the TSH is in range.
The TSH (thyroid stimulating hormone) is a pituitary hormone. Which signals the thyroid to produce. Doctors are taught if the TSH is in range so are thyroid hormones.
Often the lab protocol is to only test thyroid hormones (thyroxine -FT4 & triiodothyronine FT3) unless the TSH is abnormal.
The TSH isn’t always reliable. Most feel well if TSH is around 1 but really its the thyroid levels which should be in top part of range.
What are your results? Do you have online access to results? In not obtain a printed copy via reception.
Don’t accept verbal hand scribbled results you need results with lab reference range.
Full thyroid function requires
TSH
FT4
FT3
Also important to test folate, ferritin, B12 and Vitamin D. If these are not optimal (which is not same as just in range) the levo wont work as it is detrimental to conversion.
When you have a blood test to check thyroid levels book test early in morning, fast overnight and delay dose until after draw. Biotin can skew results so leave off any supplements the week before.
This shows higher TSH lowest FT4 and consistent testing good for ongoing comparison of results.
Hi thank yo7 for your sw8f5 reply. It’s full of good info. I can get access to my results. In March they were TSH level. …5.39 where the norm is 0.30 - 4.50. Because it was high they took serum T4 level. It was 20.8 where norm is 11.0 - 22.0. The dr then told me to take 125 instead of 100 a day. At first I was fine, symptoms reduced but they are back now, aches and pains in legs, dry skin, burning feet and numbness in feet which is always there now, restless legs and insomnia. I usually get about 4hs 30 mins! My temp is often low but not all the time but as I said the dr just laughed at that even though I told him my chiropodist had told me about it. Im going for another blood test in August where I will ask for a thyroid test again but im seriously sad and worried about my condition as im frightened it causes irreplable nerve damag3 to my feet. I have had this for 6 years now and im turning into an old lady who is made to feel like a hypochondriac and the answer is anti depressants! Can the blood levels change after a couple of months and tha5 is why my symptoms come and go? Sorry for the length of this but I feel this is my last hope . I just need to know if it is or isn’t my thyroid so that if not I can peruse other avenues.
So because you TSH was ABOVE range the doctor increased your dose. But your FT4 is actually at a GOOD level - an increase might be enough to (just) push it over range but doctor hasn’t taken that into account because they are looking at TSH.
I suspect your issue might be low FT3 which hasn’t been tested. Given you FT4 is higher in range but TSH is high.
Low FT3 can be caused by poor nutrients. You need FT3 & Nutrients tested. You might find it faster to arrange a private test to see how your levels are.
Working on optimising nutrient will improve health & FT3.
Last time my free T3 was done was July 2021. At that time my TSH was 0.04. Normal being 0.3 - 4.50 and the free T3 was 5.3 normal being 3.1 - 6.8
TSH low then. Was replacement reduced? Impossible to predict what they are now. TSH FT4 & FT3 need to be tested together
I have asked for them to be tested but the doctor said tge6 are too expensive so will only do them if TSH is wrong.
I believe some thermostats record - last 10 readings for example. Otherwise take photos of them. Show laughing GP evidence - or new GP.
I also often have a low temp of 34.5. The dr laughed at this and said I would have hypothermia if it was that low but I know people with underactive thyroid scan have a low temp.
It infuriates me when doctors do that (laugh at patients). A morning temperature as low as 34.5 is not often reported on the forum but it does happen, so you aren't alone. You are almost certainly very under-medicated for your hypothyroidism and have been for a long time. One thing to be aware of is that if someone has been under-treated or untreated for a long time the body temperature won't always rise even if dosage is raised to optimal. Or it could take years. But with an optimal dose you would feel better, if you can persuade your doctor to prescribe it.
Please ask the receptionist (not the doctor) at your surgery for copies of all your blood tests for the last 5 years or 3 years. You will need to take proof of identity. You need to know actual results with numbers and reference ranges, not a list of tests with the word "normal" next to it. (I got given one of those once - I couldn't believe my eyes!)
It is possible (in England only, I think) to get online access to your medical records and blood test results, and you might want to do that in the future. I suggest waiting to ask for this because apparently if someone asks for online access some data which reflects badly on doctors can disappear from online viewing. But I think that must be harder to achieve with paper copies.
burning feet.
knee swelling, itchiness, leg and muscle pain
This could all be as a result of under-treated hypothyroidism. But it could be as a result of having low levels of nutrients. And being untreated/under-treated hypothyroid reduces stomach acid levels and hence reduces levels of nutrients absorbed from the diet.
You really need to find out if any of the following have been tested recently, or whether low levels have been ignored over the last few years.
Vitamin B12
Folate
Vitamin D
Ferritin (iron stores)
Other things of interest that may have been tested :
CRP
Serum iron
Transferrin Saturation
TIBC
As far as thyroid itself goes, if you have results for the following it would be helpful:
TSH or Thyroid Stimulating Hormone
Free T4 or FT4 or T4 or Thyroxine
Free T3 or FT3 or T3 or Liothyronine
TPO Ab [Ab = Antibodies]
Tg Ab
Any other tests that have been very low in range or under the range or very high in range or over the range.
ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking
Burning feet is often low B12…..when were vitamins last tested
Obviously TSH over 2 is too high for someone on levothyroxine
Which brand of levothyroxine are you currently taking
Have you had coeliac blood test done….are you on strictly gluten free diet
Had B12 tested they said it was within limit but I thought it was low so they gav3 me tablets but then said it was too high so stopped taking them. I don’t think vitamins have ever been tested. Are they part of total bloods? I think it’s Tiva I’m on , sorry too lazy to go upstairs 😂never been tested for coeliac within bloods and am not on gluten free diet. Thank you
Strongly recommend getting full thyroid and vitamin testing done yourself after minimum 6-8 weeks on increased dose Levothyroxine
Many people don’t get on with Teva brand of Levothyroxine
Approx how old are you
And approx how much do you weigh in kilo
Many many people on Levothyroxine need to supplement vitamin B complex (and sometimes B12 as well)
Plus daily vitamin D
Test FIRST before starting any supplements
Private tests
Only test early Monday or Tuesday, ideally before 9am and last dose Levothyroxine 24 hours before test
Don’t test in heatwave
Medichecks or Blue Horizon are recommended private test options if GP won’t test
Medichecks advanced thyroid and vitamin testing often on offer on Thursdays
Come back with new post once you get results
Thank you for all your help. I am a young 70. I am 13st. I do not take any vitamins but I will ask for them tested when I go for my next tests in August. I understand my family do not realise how debilitating this is but they think that I have had lots of tests and it might be something I have to live with and that I should stay on anti depressants so I think I will just have to grin and bear it and just carry on but thank you for all your advice.
How long since dose levothyroxine was increased to 125mcg?
Test 6-8 weeks after any dose change or brand change in levothyroxine
13st = 82.5kilo
Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo per day
Some people need higher dose, occasionally some need less
So you may need slight dose increase again in few months
82.5kg x 1.6mcg = 132mcg per day
132mcg x 7 days = 924mcg per week
137.5mcg x 6 days a week and 100mcg one day a week = 925mcg per week
137.5mcg = 100mcg + 25mcg + 12.5mcg
Essential to test vitamin levels once year minimum…..and vitamin D twice year
Most U.K. patients forced to test privately to make progress
Most used test is Medichecks
Only do private testing early Monday or Tuesday morning (not in heatwave)
Common to need to supplement continuously vitamin B complex and vitamin D
Approx 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s usually diagnosed by high thyroid antibodies
About 80% of Hashimoto’s patients find strictly gluten free diet helps or is essential….but get coeliac blood test done BEFORE considering trial on strictly gluten free diet
Sorry just another query ? Can changing brands affect you. I was always on Teva but they say they can’t get the 100 mg now so they have put me on accord but am on 25mg teva as well. Can this make a difference not only changing brands but also taking two different brands now
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