Chronic back or limb pain is often debilitating and disabling resulting in loss of efficiency, depression, and low self-esteem. Diagnosis usually suggests arthritis or nerve root pathology and patients receive long-term oral analgesics and invasive procedures with little or no relief. Hypothyroidism may present as peripheral neuropathy which may be clinically indistinguishable from entrapment neuropathy as occurs with neural canal stenosis. Muscle cramps, aches, proximal symmetrical muscle weakness, stiffness, polymyositis, and exercise intolerance may be the only presenting symptom indicating hypothyroidism. We present five cases of acute on chronic pain that improved significantly on treatment with thyroxine. Neuromuscular pain may be the only presenting symptom of hypothyroidism. Thyroid profile (TSH, FT3, FT4) and anti-thyroid peroxidase (anti-TPO) antibodies should be screened before subjecting the patient to multiple analgesics and procedures.
Open access - and short! By the standards of journal articles, easy to read.
'Muscle cramps, aches, proximal symmetrical muscle weakness, stiffness, polymyositis, and exercise intolerance may be the only presenting symptom indicating hypothyroidism.'
'often debilitating and disabling resulting in loss of efficiency, depression, and low self-esteem.'
The 'ONLY' presenting symptom. As if that isn't enough!! 🙃
Odd that should come up now as on Wed I had a phone appointment with a pain specialist. He ha no idea my hypothyroidism could be causing me pain. But then he thought liothyronine was a synthetic form of levothyroxine.
Hmmm - call me cynical but the first case was a 21 year old man, the next three were elderly men - there was I hoping the fifth case would be a woman of any sort of age but nope - another elderly man.
‘Muscle cramps, aches, proximal symmetrical muscle weakness, stiffness, polymyositis, and exercise intolerance may be the only presenting symptom indicating hypothyroidism.'
'often debilitating and disabling resulting in loss of efficiency, depression, and low self-esteem.'
Love it - that’s the point where they normally prescribe antidepressants.
Reads like the story of my life going back to my mid 20s....and I'm now 79.
Pain!! They get it!!
The truth was only revealed when I found TUK and a few people who really understood T3 and how to use it....after decades of pain and painkillers and countless useless treatments.
I've said it all before but I still do not understand why the subject of thyroid disease is so badly taught in med schools...and more so as a post grad subject.
After all without T3 we die!!
The obscene cost of T3 is obviously a factor but why was that allowed to develop...did nobody care.
It isn't/ wasn't prescribed in vast quantities so I doubt profit was the sole reason....maybe I missed something.
I'm a cynic....but do they just want it out of use. Gone!
I realise treatment is not just about T3.....but ultimately T3 is key.
For thyroid patients this is a very positive presentation but I fear the pages will be found 'gathering dust' rather than in 'a well thumbed state'
The obscene cost of T3 is obviously a factor but why was that allowed to develop...did nobody care.
The cost of T3 is high because the NHS agreed to buy it at increasing cost. It isn't high anywhere else.
I remember a comment that (I think) came from diogenes that T3 is no more difficult to make than Levo is, yet that is the excuse used by some manufacturers who sell to the UK.
Fabulous paper. I had a firmly trapped sciatic nerve for 6-7 years, as confirmed by MRI scan, in 2001. Trapped by prolapsed disc since 1987, I think. Disc shaved 2007. I only had a position of flat on my face on the floor, 24/7 for at least 3 months and had to lie that way on the floor at a G.P. appointment to get a private referrral to a neuro surgeon to shave the disc. Same at the neuro surgeon appointment.
The authors should receive a knighthood for this paper. You too, Helvella, for bringing it to our attention. No false modesty allowed! Thank you so much for this.
This is me all over! My low back pain is terrible at the moment - takes me a while to stand up straight when I get up from a chair. The pain and stiffness in my limbs is very debilitating. Thanks for posting this.
Hehe!! Two creepy hashi twins…hobbling along…half asleep…hunched over 🤣 Hey twinny…I just increased my t3 to 10mcg a day in split doses and the back pain is not quite as bad!
Five case studies so not placebo controlled. However, these and similar patients usually have tried a good range of treatments with no success.
I get lower back pain if my thyroid hormone levels are a little low (and high creatinine). In 2001 I tried coming off thyroid medication for a primised (but not honored) test at Imperial College Healthcare. I could just about walk 400m before my back pain was so bad I had to sit at a bus stop.
IBS was the first sign of hypothyroidism I got along with lower back pain. In 1999 (before I met Dr Skinner) I had severe back pain during a holiday. I was unable to drive from B,Ham Airport to London so my wife had to drive. At the time she was an inexperienced driver. We hit a flood of water on the M40, before I could say "don't brake" she did and acquaplaned sidewards into lane two where the car was struck by a coach. We set off at around 100 mph (Newton's third law) towards the central reservation. I remember saying "don't steer it's OK", we were at a 30 degree angle, my vector algebra kicked in and I reckoned the angle was good enough to slow us down without causing too much damage! We then went across all three lanes and were very fortunate to hit a chain fence with bushes in front. We were also lucky that it was a stong car (BMW) which had recently failed its MoT and had steel plates welded on the sills where it was hit. The point is the failure to diagnose my hypothyroidism could have caused many fatalities had it not been for the coach diriver's skill and our fortunate route along the carriageway.
Failure to diagnose hypothyroidism has great cost and great risk. When Boris Yeltsin couldn't take his vodka and had to cancel meetings it was due to hypothyroidism, his finger on the nuclear button and unpredictable behaviour.
‘my vector algebra kicked in’ - the things you think of as your life flashes past you!
I held my breath while reading your comment, it must have been utterly terrifying for you both. After I was finally diagnosed with Graves’ disease I read somewhere that if I had been in a car accident I could have had a massive adrenaline surge that could have killed me. Yet all the time thyroid conditions are under diagnosed and under treated. One has to wonder why thyroid problems are often treated so causally.
One has to wonder why thyroid problems are often treated so causally.
I am 100% convinced that the main cause is sexism and misogyny. Women have been doubted about everything to do with their health since the time of the Ancient Greeks.
They think we aren't really in the pain we say we are and we are just drug seekers and hypochondriacs so they give us anti-depressants rather than painkillers i.e. they sedate women rather than relieve pain. Men get pain treated rather than being given something to sedate them.
They think we protest too much about everything.
They don't believe that thyroid disease is very serious - after all, it mainly affects women.
Doctors think men who suffer thyroid disease must be "lesser" men because they have a woman's disease.
Working as a doctor is a great profession for sadists. They don't even need to do anything, they just need to do nothing.
I wasn't scared because I was in a bit of a daze, the car accelerated very quickly and apart from its trajectory I didn't know what was happening. Ignorance is bliss!
As humanbean notes below hypothyroidism has enormous cost which goes under the radar. Endocrinologists usually push 'other causes' wasting vast NHS resources investigating signs and symptoms that are classic hypothyroidism. I think a large proportion of IBS cases are simply undiagnosed hypothyroidism, perhaps caused by endocrine disruption, it certainly was in my case.
Oh, that was good to read. A couple of years ago my Levo had been lowered and I suddenly started to have fibromyalgia (which was miraculously cured by optimizing my thyroid hormones. Go figure.). Thank you, Helvella, for always sharing these publications. I'm a bit put off by the fact that they only looked a men (AGAIN!), when women are the ones that predominantly fight the battle with autoimmune thyroiditis. But at least now that pain issue is out in the open, although.....maybe it only does apply to men and women are just hysterical.
This is all such an interesting read. I had been suffering with incredible pain through my right leg that the doctor sent me on with Naproxin, booked me in to see the physio and suggested that I self referred to Rheumatology (under them for all my other Autoimmune conditions). Pain killers didn't touch it
Physio thought it was an issue with my back so sent me away with exercises and I had to wait to see Rheuma.
Since the first visit to the doctors about my leg I have had my regular bloods for my thyroid and the doctor increased my levothyroxine dose that I had not connected any improvement with my leg pain until this morning.
Thursday I saw Rheumatology and he thinks the pain is sciatic and said to continue with pain killers and exercises.
Physio was yesterday and I said that the pain had improved massively and at that point I said that I could only put it down to the exercises so she told me to continue with them. I have not touched the painkillers as already take enough pills!
I am still having leg pain and the levo dose change has only been a couple of weeks so will be interesting to see what happens.
Thank you SO MUCH for sharing articles and information like this with us to help us try and understand this crazy thyroid world that we are all living in. So grateful
Pain is my only symptom of hypothyroidism, particularly in my hands and arms and lower back. I did lots of physiotherapy and acupuncture before someone figured out what was actually happening. I'm currently having difficulty in getting some T3 prescribed by my doctor - will show her this article. Thanks.
Thank you, helvella. This is big! Finally, a paper that gives recognition to what so many of us suffer from, while constantly having to deal with being fobbed off with painkillers and anti depressants . You have done us an important service by sharing this
Thank you helvella really interesting read. Before I was diagnosed Hypothyroid I was out dog walking! My last one was nearly 8 miles! ( lower back pain nursing) but bearable. Then boom the backache started again and now is getting progressively worse 😞 where I can’t walk without pain 😞 weirdly sometimes it’s better and sometimes it’s worse!
Thanks Helvella. I've had terrible back pain since before I was diagnosed with hypothyroidism. Although mine has got worse since I was given Levothyroxin. Still trying to get to the right level.
Some comments have pointed out the small number of mostly older, all-male subjects.
A great shame that there weren't more, and that ages and sexes weren't better balanced.
But case studies have to write about the cases they see. We do not know why this selection occurred but there could be any number of factors - positive and negative.
And such small series of case reports have the chance to think about each case individually. Something that rather disappears as the numbers rise.
Maybe it will encourage some others to write up their cases as studies - possibly with a very different composition of subjects? Even better if they do so across the world.
Agreed, at least those case studies were written up and have been presented in a medical journal and be brought to the attention of our doctors.
I still find it interesting that it all seemed to be men who were involved but hopefully someone will see the report and it will be a start for future research - it’s all got to start somewhere hasn’t it.
Thanks helvella. I don’t really understand some of this, but could you please advise on this part: “Accumulation of mucopolysaccharides, chondroitin sulfate, and hyaluronic acid in the interstitial space leads to water retention and consequent entrapment neuropathy”.
I was diagnosed with arthritis of the left hip last year, and I have been taking glucosamine sulfate & chondroitin sulfate, which has helped a lot with the pain. Does this statement suggest it may be a bad thing, given that I also have hypothyroidism?
The problem isn't so much the actual substances themselves, but their physical presence.
In hypothyroidism, they build up around our bodies and that can result in pressure on nerves. We tend to think of "water retention" but if you imagine injecting jelly (blocks or granules of gelatin or agar), those jelly materials would absorb lots of water and swell. The swelling leaves less room for everything - muscles, connective tissue and nerves. And can end up pressing on nerves - affecting the way they work and damaging them.
Now I don't know why these mucopolysaccharides, chondroitin sulfate, and hyaluronic acid accumulate. But they do.
With adequate treatment that accumulation should reduce and, eventually, disappear.
Although taking glucosamine sulfate & chondroitin sulfate could, possibly, contribute raw material for swelling, I don't think we can point a finger and say they cause the swelling in hypothyroidism. Still less when adequately treated.
I thought it was because the metabolism slows so they don’t get removed quickly enough
Dr google says:
thyroid hormone deficiency reduces the rate at which hyaluronic acid is degraded, while increasing the rate at which it is synthesized
More of it and harder to shift - double whammy
perhaps the same for the others?
Dr G:
Mucopolysaccharides increase in hypothyroidism because the thyroid hormone inhibits the accumulation of mucopolysaccharides in a dose-dependent and reversible manner
Chondroitin sulfate (CS) increases in hypothyroidism because the thyroid hormone regulates the expression of proteoglycans, including CS, and hypothyroidism reduces the amount of thyroid hormone
Thanks for the useful explanation. I’m not adequately treated yet but I’m working hard to get there! I’ve had to reduce my Levo because of symptoms of over medication. I have an endo from out of area who has recommended T3, but my NHS area are reluctant to pay for it. GP is having one last try with the locals 🤞
yet another who recognises themselves over 40 years ago with ‘proximal girdle pain’ linking to hypothyroidism diagnosed 20 years later. My current recovery from 6 weeks when GP insisted on reducing my 100 levo.to 75 mcg ( along with private prescribed 15 mcg T3) mirrors this return of lower back pain too…I’d put it down to more research I’d found recently on how collagen/ tendon receptors needed the T3 for maintenance, but here is another variation for me to consider especially as a history of pressure on nerves in my neck go back into my 20s ( followed by Jimh111 ‘s IBS). Always learning on this forum!
My diagnosis started after I went to the doctor for pain in my hands and ankles. They did blood panels for arthritis and when those came back normal but my TSH was just out of range they did a thyroid panel and test for antibodies.
I wasn’t ignored, but my gp practice is pretty good, I do feel lucky.
Since being on Levo my pain had significantly improved, not quite gone but there is still a little bit of optimising to do 😀
Thank you so much for posting this very informative article. I suffer daily with muscle pain. Even from just pushing a shopping trolley- the next day I feel like I've been on a hike! It has also raised the question about my fibromyalgia diagnosis? Thank you 😊
One more question if. Any one is still visiting this post.
Anyone have any idea if the stiffness one feels… if it’s not pain necessarily… does stretching or working it out help or hurt those stiff muscles ; considering what might be happening at the cellular level?
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535-537, Jul–Sep 2024. | DOI: 10.4103/joacp.joacp_283_23
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