Burning legs: Periodically I get burning legs... - Thyroid UK

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Burning legs

helbell profile image
30 Replies

Periodically I get burning legs...sometimes all over burning. Nasty sensation. Seems to tie in with episodes of stiff painful muscles. My muscles feel sore and bruised to touch right now. Also a sensation of them not releasing properly, not exactly cramps, but contracting and reluctant to let go. And just generally feeling like they have been severely overworked when I have done very little. My feet are starting to burn now and they will be killer when I return from shopping. Always increases on sitting/lying still. I am supplementing with D and B12 and iron but I will shortly be having full blood test. I even wondered if autoimmune flare up could do this. Or, too much thyroid hormone. Pulse low as usual and temp around 36.5/7, quiet warm on moving but no tremors.

Energy levels OK

I do have a stinking cold and feel a bit stressed

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helbell profile image
helbell
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30 Replies
Hennerton profile image
Hennerton

I associate burning feet and legs with a thyroid out of balance. I suffered badly with it when I had Graves' and was very hyper and then after TT had it whenever I was hypo, whilst trying to get medication right. Do you have recent blood tests with reference ranges? If so post again with those and what dose you are on and members can comment.

helbell profile image
helbell in reply to Hennerton

I will Hennerton, thanks. I've ordered a full blood count through Blue Horizon and will order thyroid panel so I can get the draw done at the same time.

shaws profile image
shawsAdministrator

Is your B12 at an optimum level as I have heard that expression "burning" pain when it is pernicious anaemia, so get your GP to exclude P.A.

helbell profile image
helbell

Thanks Shaws it does fit into that too. I'm on B12 supplements and not sure of the best test. I will go back to another post with that advice. It also fits into celiac and diabetes. Having diabetes check on Tuesday. The sore feel like they have been kicked stiff muscles along with joint pain doesn't really fit into the diabetes signs.

debjs profile image
debjs

I have this when both hypo and over medicated with T4 (have a conversion problem). It was unbearable when on T4 only. For me does not seem to be associated with vitamins and minerals as these are now optimum.

greygoose profile image
greygoose

I would say, get your magnesium checked. Low magnesium can cause all sorts of problems you never dreamed of!

helbell profile image
helbell

Thanks every body. I have looked up mag deficiency and can cross of a lot of symptoms. Trying to find full metabolic panel test in uk. Unless that is included in full blood workup anyway.

helbell profile image
helbell

Found more answers and it is looking very much like peripheral neuropathy caused by autoimmune thyroiditis. It still comes and goes and far worse when I overdue it.

lynnwin profile image
lynnwin

Hi just wondering how your neuropathy is ??? I was diagnosed with hadhimotos thyroiditis 10 years ago I went hyper but even before confirmed hyper I had burning on my legs and arm sometimes prickling :( had so many tests no one knew why ? I was given meds at the hospital to stop the hyper symptoms it was carbmomirzol. And it did bring it down my tpo antibodies were over 1000 and was told I would eventually go hypo ! I have thyroid nodules too ! Now 10 years on I was feeling poorly thought I was hyper again but my TSH was 4.67 the doctor said 5 or over to be hypo ? I felt so unwell he gave me 25mcg of thyroxine and after 3 weeks upped it to 50mcg now I have the neuropathy back bad with burning sensation in my body plus prickling sensation :( I've been on 50mcg for 3 weeks and in total 6 weeks including the 3 weeks of 25 mcg .. I've managed to get my gp to do bloods next week although he said not for 12 weeks but I'm feeling desperate have I gone hyper ? Is it the antibodies causing the burning or is it hypo ? Would appreciate anyone's thoughts and helbell had yours got better now ? Thank you so much xxxxxxxc

helvella profile image
helvellaAdministratorThyroid UK in reply to lynnwin

An interesting PDF about Burning Feet (but don't think that all the issues apply exclusively to feet):

racgp.org.au/afp/200312/200...

helbell profile image
helbell in reply to helvella

Thanks Rod. Good source of info...just about covers most usual causes of burning. I forgot to mention diabetes to Lynnwin . I don't rule anything out nowadays and even think there is a myelin sheath issues with hypothyroidism (will look in a mo). I just know that getting closer to optimal has seemed to spread the energy through my cells and the burning and numbness is dissipating along with other symptoms including rabid hypoglycemia. Probably a tad too optimal but I'll hit the mark eventually. So nice to be warm for a change.

helbell profile image
helbell in reply to lynnwin

Check out helvella's link and this...just about covers it.

mcvitamins.com/neuropathy-r...

Dr Sarah Myhill talks about not exercising when we are fatigued because we damage muscle tissue and whack out the mito's.

As I understand it...from another forum, 'thyroid disease can cause a much quicker build-up of lactic acid in the muscles (and a slower slough-off) which burns and kills muscle fibers'

That seems to be my experience. And all the other less optimal things ran in tandem with being under replaced.

helbell profile image
helbell

Hi Lynnwin, sorry to read about your suffering. I can't. Comment on the hyper connection nor antibodies. I did try the mag/carb drink and it helped. Since then I think I can link my burning pains to being hypothyroid, as I a come closer to optimal the burning isv less to barely noticeable unless my levels drop. Also, my ferritin was low and I have read that that can cause burning. Check out your ferritin, D, B12 and mag tie you can as all of these as well as hashi flare can be implicated. It is allodynia - nerve pain and I found others concerned about on thyroid forums. post your last lab results and the others can help interpretation. Good luck x

HEA72 profile image
HEA72

Dear Helbel, my heart goes out to you. I'm sorry I'm unable to give any advice, because although I'm experiencing a whole myriad of hypo symptoms I haven't felt the burning sensation you describe. I'm glad others here are offering some better support than I can. I just want to thank you for sharing your ever so cute picture of your cats legs and paws. So very sweet, the picture's made my heart go all slushy and saying "arrrrr" out loud. Thank you to you and your adorable moggy for bringing some warmth on this cold Saturday morning. I hope you're able to resolve your burning issue. This illness is wretched isn't it. It feels so liberating when the symptoms go. x

helbell profile image
helbell in reply to HEA72

Hi HEA72, thank you and glad you enjoyed the cat feet...I was kissing them last night as he likes to snuggle right up to the keyboard. My burning issues are in remission at the moment. It is absolutely vile. I think out of of the pain and fatigue and host of other wired symptoms burning legs - sometimes whole body - has been the worst. It tends to happen a t night, too.

It is a symptom of hypo and hyper, I believe as well as across whole host of neuro/endo/autoimmune, and muscular skeletal nerve issues.

Wishing you nearer to optimal soon. It makes an unbelievable difference. Taken me a year but cruising nicely at mo and working all day....first in three years. xx

HEA72 profile image
HEA72 in reply to helbell

That's great to read you're doing so well now (apart from the burning issues). What's worked for you to help you feel well?

P.S. more cute cat pics please!!! ;-)

helbell profile image
helbell in reply to HEA72

I can never be sure but I think a big element is getting closer to optimal dosing. I haven't found it easy to raise before pooling kicks in resulting in hyper/hypo symptoms. I was tipped off here when I was lost about what was going on. Behind that may be some iron and D issues along with adrenals but I fancy they sorted themselves when I became more optimal...guts and everything work near normal. I have stayed on a lowish dose of NDT: 2 - 2.5 grains, and cautiously add t3 when my daily dose wears off. I like the longer lasting effect of the NDT (t4 + t3) but I also like how the t3 can resolve sudden slumps or hypo issues, or pooling.. I am also finding a small dose of t3 before bed relaxes me and helps me to sleep naturally. All that said, I think I am pooling now. I have been working flat last 10 days, absolutely amazed my poor body could keep up but now is payback and levels are out of whack. It freaks me every time it all goes belly up but I have to remember how I was this time last year...wired zombie with about 200 symptoms including nuero-auto-endo, which can also be a cause of burning....onwards and upwards. Keep posting how you fare x

Heloise profile image
Heloise in reply to helbell

I miss my cat so much and love the reminder of how sweet they are.

I went through years of burning thighs. I've also read about the lactic acid. I know that wine or lemonade made it worse. It went away after a while and my thought is that it destroyed the small nerve fibers in the area and that's why I no longer felt the burning. My legs are still rather weak and some numbing around my toes. A doctor wanted me to take gabapentin but I take Gaba instead from time to time and it is very helpful. I'm also taking T3 only and that may have something to do with some improvement in everything.

I also saw your post about methylation. I've been reading Suzy Cohen about it and the gene MTHFR. Did you follow up at all with that?

helbell profile image
helbell in reply to Heloise

Hi Heloise, no I did not follow it up yet. One of those days when I hit a wall again and I will try it. My burning legs have been a lot less lately and my guess is lactic acidosis because of t3 not getting in to the tissues...but who knows. Being under replaced or using up supplies in serum might mean we just don't deal with mineral absorption...so many things to consider. Burning definitely less when I feel properly replaced. Sometimes I need a top up but don't realise it for ages. I have a certain set of symptoms that recur when I'm low but I did not always recognize them....sort of sneaky. I have the numb toes too, but I think I also have plantar fasciltis (spelling) near the big joints just before toes. Try rubber ball massage with feet to get blood round. I also top up with b12 when I remember. I wonder if it tissue/nerve damage caused by being under replaced/un-detected for a long time. I was so ill before low thyroid eventually showed up in my bloods. I have had had fasting blood sugar twice and my GP thinks I'm good but I will ask again as I know we are more prone to diabetes. I have read about sfn in hypot and in autoimmune disease. We have probably already covered that...I just zoomed in on your post. Sorry to read you are missing a pussy cat.

Hugs xx

Heloise profile image
Heloise in reply to helbell

Thank you, Helbell.

We rely on the body doing so many things automatically so if we have to start dealing with all these technicalities, it is a mountain of labor. The reason I'm looking into the methylation issue is because it has a lot to do with the body detoxifying itself which I'm thinking lactic acid is one of them. Alcohol is very destructive if you already have the problem and there are many different levels from minor to major but this is an interesting article if you care to take another look.

suzycohen.com/articles/meth...

helbell profile image
helbell in reply to Heloise

Dgosh! This rely comprehensive..... Still reading.

Heloise profile image
Heloise in reply to helbell

LOL, me too. I'll tell you what I've been doing if I find it helps. I would really like to have the gene test done.

helbell profile image
helbell in reply to Heloise

Hyman gets straight to what might help naturallydrhyman.com/blog/2011/02/08...

Heloise profile image
Heloise in reply to helbell

Yes, Dr. Hyman is giving very similar advice to Suzy. I already have the methyl folate, methyl B12, and just ordered p5p and betaine. Did he say 3 drinks per week? Yay. I thought I could have none at all.

I was hoping to hear other people's experience with this so it looks like he has a few on his website. Thank you.

lynnwin profile image
lynnwin

Thank you so much for your help and links :) I'm sitting here with my legs stinging and burning inside :( I have been having B12 injections for over a year as I am also a coeliac and my b12 was low from not absorbing :( I'm having all my bloods taken next week and have asked for ferritin and magnesium and vitD I have been taking vitD for about a year ! I have had a headache everyday but as soon as my gp gave me thyroxine he said stop my propranolol which I had taken for 10 years since hyper 2x10mg a day I don't think this has helped the headaches :( my arms ache and feel weak :( the gp thinks after 6 weeks I'm over medicated on 50mcg of levo but I think I'm under medicated ? Saying that it wasn't till I went from 25mcg to 50 mcg that the burning sensations started :(

It's a total minefield when I get up I don't feel too bad and carry on as normal but as the day goes on whack the aching headaches and burning are back :( thank you so much for taking the time to reply I really appreciate it ! Keep well xxxxxxxx.

helbell profile image
helbell in reply to lynnwin

I assumed one had to be weened off beta blockers! Maybe the sudden change in vasodilation triggered the headaches...might be worth checking. I just don't know enough Lynnwin but you have a higher than ideal tsh according to patient experience and thyroid gurus, and you are on such a tiny dose followed by a tiny raise...I also wonder if you are having feedback loop issues. Check back through the comments on this thread. Others have said they have had burning when under or over replaced. And please line up your probs and post them...if you haven't already done so xxx

lynnwin profile image
lynnwin

Thanks hellbell I am new to this forum and not to good with posting etc. :( think I maybe missing posts ? No gp didn't wean me off the beta blocker but I cut to I a day for 3 weeks then stopped the other one ! Going for all my bloods tomorrow and will make sure I get all the ones that you all have recommended ! I will post when I receive my results thank you for taking the time to reply I realy appreciate it :) just need lessons on using the forum maybe ? Xxxxx

helbell profile image
helbell in reply to lynnwin

I don't find all the posts by any means. Good luck with investigations :0x

lynnwin profile image
lynnwin in reply to helbell

Thank you hellbell :) I'm not sure if other peoples burning is from muscle over use ?? Mine is like neuro apathy :(

Will post my results thank you so much xxxx

helbell profile image
helbell

We just have to keep investigating :) Couple more linkc tob sfn . all this stuff is related. Please experiment with the drink, unless you are contraindicated for bicarb. Xxncbi.nlm.nih.gov/pmc/articl... and extensive tests for sfnncbi.nlm.nih.gov/pmc/articl... SFN can be caused by endocrine disorders.

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