Hey everyone, my annual review is due soon & like so many others on here, I get really frustrated with the general level of help we get from our GP’s & the NHS with thyroid conditions!
Just recently I’ve been getting more & more problems with muscle aches & pains so much so that I find myself having to get up in the small hours of the morning & because of the level of discomfort I can’t sleep!! Was wondering if anyone has had the same issues ( stupid question really! ) & what they did to ease it! Thanks in advance kind people! x
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Shanghai-Suki
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Have you tested Vit D? Low Vit D can cause muscle and joint aches and pains. If GP wont test (many wont) then this lab is an NHS one which offers a dried blood spot fingerprick test (very easy) to the general public:
Hi thanks for the advice! I will ask at my review if they will do a full check on my vit / minerals & see what happens if not I’ll use the link, thanks again x
My VitD is really good but I still get awful thigh muscle pain, I just tend to massage my thighs with a good oil and if that doesn’t work I take soluble paracetamol As that gets into your bloodstream quickly.
I’m very achey, don’t know if it’s the heat or what. Worse than usual. Especially after yoga or cycling, DOMs can take 6 days to resolve. Excruciating pains though, and worse in the night. Have to have a stretch in the morning.
I’m thinking histamines. 🤷🏽♀️
Or perhaps the vit D I’m taking is duff. 🤷🏽♀️
Need to do a test and find out what my levels are.
Folks always say magnesium but I already take that and potassium via cream of tartar.
I’ll be interested in your replies, how are your vits?
Don’t know what my vits etc are are so will need to get them checked, don’t currently take a Vit D supplement so might give that a shot….thanks for that & hope things improve for you too!
don’t currently take a Vit D supplement so might give that a shot
Please test first and come back with result. Vit D dose depends on current level, it's a fat soluble vitamin so excess can't be excreted, it's stored and taking too much can lead to toxicity. It also has important cofactors that are needed when taking it so test, come back with results and guidance will be give.
Low zinc will cause muscle aches. And hypos are often low in zinc. But, do get zinc and copper tested first, because they need to be balanced, but if your zinc is low, your copper will be high, so you would need to take a zinc only supplement, not a zinc and copper supplement.
I too have really severe muscle pain with little exertion, especially in biceps and shoulders. Have closely monitored thyroid levels and antibodies (ending up on T3 only) vitamins, ferritin etc. However, I haven't tried testing zinc and copper and all of a sudden Grey Goose's suggestion set off a light bulb moment re zinc. The question is where do I get a test for zinc/copper. I am in Canada and use Blue Horizon regularly for thyroid, antibodies, vitamin levels
There is constant refusal and push back on any testing other than TSH, maybe T4 if you're lucky - even with an endocrinologist who knows I'm on T3 only!! they will not test Vitamin d any more and only suggest taking 2,000 I.U. per day instead. This is why I use Blue Horizon (Canada Blood Tests) based out of Ontario. I found about this testing on HealthUnlocked and it has been a godsend. thanks for you reply. I will try to source copper/zinc test.
Have you talked to Annabel (if you are still seeing her)? She has given me requisitions for Dynacare. I then paid for the testing myself. Although, I never asked for zinc/copper.
Hypos are usually zinc deficient, which means their copper is high, the two being linked. But, not always, of course (that would be too simple! lol), which is why I suggest testing both. If your copper is high, taking more is pretty awful.
I was zinc deficient, with very achey muscles. Supplementing with zinc I went almost over-night to being a 4+ Ibuprofen a day girl, to zero ibuprofen. It was like magic.
If purely going on symptoms alone I don’t fit criteria.
Although my coeliac symptoms were silent, so who knows.
My symptoms started 6 months in when started taking Levothyroxine but told can’t be that causing anything, as I’d be like it all the time with these muscular issues but it was heading that way in 2019 until back end of 2020, I went on hrt and stopped the other Levothyroxine brands saw improvement and…although I’m having a bit of a time with Mercury brand at present not noticed that before, now wondering if it’s the acacia in it as bloating & digestive issues these past few weeks whilst on it but will persevere in case just the heat etc and hope next batch is my usual … I don’t get on with Teva & Aristo. I have down any brand containing lactose at moment on my prescription think may need to change to just Almus & Accord which I know I am better on.
The criteria for what? Low zinc? There's quite a long list of possible symptoms, and I've never even seen muscle aches mentioned. But, you don't have to have them all to qualify. So many symptoms are non-specific, could be caused by a number of things. Which is why we need blood tests and can't go on symptoms alone. Also, a good test is trying taking the supplement in question and see if the symptom disappears.
Yep, and that’s a good idea regarding zinc supplement.
Muscle aches are there for both if you dig enough to find but like you say they’re vague symptoms and often put down to other things, but looks like they can’t really accurately give levels regarding testing , just deficient or toxicity.
Like many of these minerals, most levels are present in muscles etc and not circulating blood to give accurate readings from a blood test.
Sorry, can't help you because I live in France, where self-testing doesn't exist. So, I know nothing about the different companies available in the UK.
I have had similar problems with muscle aches and find taking vitamin D supplements and magnesium have helped. You need to take the magnesium later in the day as it need to be taken a long time after thyroxine.
I have found my Vit D plus K Pearls extremely helpful (advice from SeasideSusie ). They allow me to do things in the morning before fatigue/low cortisol catches up with me. I have ‘isolated’ it, so I know that’s where one of my improvements definitely comes from. Much better but remains a drawback. I just don’t know whether it will deal with it altogether or not! Obviously other decisions may need to be made re: meds.
I suffer with muscular aches then when bad they often turn to spasms and cannot walk move very well at all for weeks in end. What I describe to various GPs and 2 endocrinologist say it doesn’t sound like thyroid type of problem… 8-10 yrs of incapacitating problems at times the last 6 yrs it’s progressively got worse more frequently and severe in 2020 I couldn’t get out of bed not back to that level but since have been under endocrinologist and faffing with TSH, FT4 & FT3 levels and takes a long time with each adjustment and 2 endocrinologist doing same more investigations to other areas of possibility 🙄…but I am still perimenopausal (57) and can’t rule out other gynaecological problems. I have high creatinine levels but all other kidney function and levels are good. I do have constipation as another symptom of hypothyroidism/Hashimoto’s my only other problem I’d say…I have up and down vitamins D levels and now supplementing but not deficient. I had them in good place and still had chronic problems so at moment cannot correlate anything other than I always have low FT3 levels. I don’t convert thyroid hormones well. I was on Liothyronine for best part of a year my FT3 level plateaued and still low in range whilst on it and benefits of taking it stalled and endocrinologist wouldn’t increase the medication based on TSH going low, then he retired and new endocrinologist is waiting to hear from me and whether we start Liothyronine again … I have increased Levothyroxine and have actually been no worse than on combined Liothyronine and Levothyroxine but obviously levels FT3 are still low… so wondering if the other hormones with these ups and downs in perimenopause is causing more problems and I’m surely soon to be through this area given my age so seeing if this area is the problem at moment. Doesn’t answer why FT3 is low but other than self prescribing to get those levels right up but I’m not keen on doing this at the moment but I haven’t ruled out doing it either … slow process of elimination… I definitely haven’t ruled out it’s the FT3 causing hypothyroid myopathy … just tricky to pin point at my stage and with other possibilities messing it up🙄
hi, CoeliacMum1 , I’m wondering what dose of Lio you were on, and whether you started low and were able to experiment with increasing the dose gradually.
I’d suggest you start a new post and add your blood results as your post is a bit hidden here.
Shanghai-Suki asked if anyone had same issues and what eased it.
I was just sharing my experience (albeit longwindedly bad habit of rambling apologies)
I am not yet posting about my situation for anyone to resolve it at present, as I have taken advice on here re my situation and have tried few avenues mentioned already and it’s ongoing …but I am not yet at a stage to say if my thyroid is the problem or not, regardless of low FT3 …maybe that point got lost in my blabbering on, along with the prescribed Liothyronine bit as it wasn’t an option to increase, unless I dosed myself.
I will post when eliminated other problems, but thanks for your concern.
I too have really severe muscle pain with little exertion, especially in biceps and shoulders. Have closely monitored thyroid levels and antibodies (ending up on T3 only) vitamins, ferritin etc. However, I haven't tried testing zinc and copper and all of a sudden Grey Goose's suggestion set off a light bulb moment re zinc. The question is where do I get a test for zinc/copper. I am in Canada and use Blue Horizon regularly for thyroid, antibodies, vitamin levels.
I have exactly the same problem!, diagnosed underactive thyroid 2 yrs ago and just seem to be getting worse!, on top of that I also suffer with oesto arthritis which gives me a double whammy!, constantly waking during the night, (not that I sleep much anyway), the worst pain I have at the moment is in my lower back so every time I turn over my back goes into spasm!. The only thing I do is take two pain killers before bed, sometimes it works sometimes not, I actually don't bother anymore with GPs, don't get continuity anymore, see someone different each time, can't be bothered to explain my medical history over and over. So probably not very helpful but at least you are not alone!
I’ve had various full spinal MRIs a Dexa scan and dozens of investigations to eliminate other autoimmune disorders and my pain … started hrt and it eased a bit… found I had low FT3 and went off down another rabbit hole on that which isn’t resolved yet… found gynaecological issues too so pelvic pressure and problem’s possibly … doesn’t eliminate the fact FT3 is low in range and conversion problems. My point is, is there anything else possibly causing yours, although I haven’t osteoarthritis which I’m sure I would be actually labelled and not investigated further 🙄🤦🏻♀️
Believe me , knowing that I’m not in the minority does give a certain form of reassurance! Thanks for taking the time to reply, everyone on here is so helpful & I’ve got a lot to consider! Firstly though , see if I can get any help from my GP practice!! Don’t hold out much hope though!!
Hi Dakie, I can completely relate to this. I was taking NSAIDs and painkillers and occasionally muscle relaxants. All whilst trying to find the optimum regime and dose of thyroid medication. The back spasm.seemed to co-incide with trialling NDT though might be coincidence not causation.
Physically, I took matters into my own hands and started the Tom Morrison's Simplistic Mobility Method 10 weeks ago. Don't get me wrong, it was sore, but after 2 days I had my first night of 6 blissful unbroken sleep in over 4 months. I take the mobility exercises as far as my body can tolerate on any given day. I haven't taken any oral NSAIDs, painkillers or muscle relaxants in that whole time. Only using Ibuleve gel a couple of times. It's been a game changer for me. You might want to check it out.
Hopefully you'll be able to find what works for you and start getting a good night's sleep.
All the replies are very good. Based on what you said, have you considered your body might be asking for hydration? Being more aware of total volume of water and electrolytes really helped my similar situation. As we get older, the thirst drive diminishes.
"Conclusion: A significant physical fatigability could be shown in euthyroid HT patients despite missing obvious neuromuscular deficits in routine testing. Further, elevated pain and fatigue perception in HT patients seem to contribute to nonspecific muscle complaints in these patients. A possible pathogenic role of thyroid autoimmunity in hidden neuromuscular involvement may be suggested." pubmed.ncbi.nlm.nih.gov/335...
I also randomly suffer from muscle pain, starting at night, in upper arms, shoulders and thighs, especially after "overexerting" myself (I still have not found where those limits are. They seem to be a moving target). Nothing I have tried so far has helped. It started the first time levo was lowered from 125 to 75, went away when increased again and came back to stay after another decrease, even after increase (again) and addition of lio. I fear it is another of those things, where we have to figure out ourselves what it could be. And maybe it is exactly what is mentioned in the above conclusion. But it is probably a good idea to exclude everything else first (whatever can be thought of) before accepting defeat. There have been some suggestions here that could be explored. Hope you find the right thing to do to find relief.
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