have been on Levothyroxine since 2007 and have never ever felt good on it. I have had pain in my left shoulder on several occasions which can last for weeks and then goes. I do believe this is something to do with the 100mg Levothyroxine I take daily. This has now happened again but this time the pain is excruciating and is totally debilitating. I saw a paramedic consultant a few days ago and she and a doctor she consulted refused to blame the Levothyroxine for the pain and inflammation I have. I have been prescribed Codeine Phostate but this and other pain meds are not touching it. I am at my wits end not knowing what to do and have considered stopping Levo and taking Metavive. I was prescribed this by a private doctor several years ago but I stopped taking it due to costs.
Has anyone else here had joint problems due to Levothyroxine?
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Crazy_Diamond
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First step is to get FULL thyroid and vitamin testing
See exactly what is going on
what brand levothyroxine are you taking
Do you always get same brand at each prescription
Exactly what vitamins are you taking
Is your hypothyroidism autoimmune
Frozen shoulder due to inflammation is common with autoimmune thyroid disease
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
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 that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test 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
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
if you already know you have autoimmune thyroid disease
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
I’ll definitely get the test done after Christmas, but I need this gone by Christmas Day as have 10 people to cater for! I had it for 3 weeks now!Very bad timing.
Brand is Accord and I always have that same one. Originally was Temu I think? I’m
Sounds like a frozen shoulder which suggests your thyroid hormone levels are too low or you aren't converting enough to fT3 rather than causing the issue... this ties in with your high cholesterol
I started going swimming 3 to 4 times a week to help address the high cholesterol, but then this happens. I can’t really blame swimming as it happened after I’d been going regularly for 4 months. It definitely feels a frozen shoulder. I can barely move it without excruciating pain. I’ve tried all manner of neck exercises but 3 weeks later it’s still just as bad.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
You’re not taking statins are you?
Swimming could have exacerbated shoulder
See physio for specific frozen shoulder exercises
It takes months to subside…..my frozen shoulder still niggles a year on, especially if I don’t do the exercises regularly
No I refused the offer of statins. I was aware that high cholesterol was connected to thyroid issues but no doctors at my surgery would admit that. I had to do a self referral to physio via the NHS. This was Tuesday and not heard anything yet. Did pain killers help your shoulder? I am taking x2 Nuromol and it doesn’t touch it.
Putting a coat on one of the most painful things. I still am putting coat on with “wrong” arm first as it’s still too uncomfortable to do the right way
Could be frozen shoulder or tendonitis, which is an inflammed tendon which can rub on the top of the shoulder. I had frozen shoulder years ago and currently have tendonitis on the opposite side, the symptoms can be very similar. Mine is definitely tendonitis this time as I had an ultrasound last month.
I'm currently functioning as a lob sided T Rex, as I'm unable to lift this arm much at all.
Unfortunately frozen shoulder can take months or sometimes years to rectify. You could ask about getting a steroid injection put in. Usually by a GP. I'm due my second next month. I was given Nefopam for mine but haven't taken them, as I dont have a good track record with painkillers.
Just the opportunity to see a doctor would be good. Seeing Paramedic Consultants seem to be the norm in my practice. She offered Naproxen but the last time I took that I had hearing loss. So as you can imagine I’m very reluctant to take that. I’ve had a steroid injection in my hand before but can imagine that a jab in the shoulder might be a bit more painful.
Actually mine was painless, surprisingly so. Its just it didnt help. Sometimes a second jab can hit the spot. Using a guided steroid jab with ultrasound is the gold standard as this ensures they get it in the right place. Private physios can often offer this. Or an orthopaedic or rheumatology clinic. But obviously there will be a wait for those.
It is such a poor service NHS GPs offer these days! Where I live (rural) we can get face to face appointments - I had to wait a week to see the muskoskeletan guy for a cortisone injection and now, 10 days later, I am pain free!
Yes notably post Covid. My surgery has merged with about 4 others in the town and are nowhere as good as they once was. Shame really. Glad you were able to get your pain sorted.
Just a ‘yes’ I’d consider low T3 as I personally had years of neck/ spine problems which got better ( not necessarily cured as age also intervened) with adding T3 as always in 3-13% range. Go to gentle McTimoney trained chiropractor now to keep me pain/ stiff free.
Mine was McTimoney trained but didn’t agree with the way the two branches of chiro.merged a couple of decades ago…to me ‘the others’ were too rough and from experience quite happy to leave you under a TENS machine for too long, or give xrays willynilly. Try looking up ‘spinal manipulator’, or look again as the Bournemouth chiro.graduate course has shown an interest in McTimoney and some are using that form after graduating.
I have similar. Mine definitely started from jarring my shoulder and took 2 years to go (opted for natural healing). It flares since and lasts a few weeks each time.
Hi I really feel for you its so horrible , I’ve had loads of problems with frozen shoulders both at the same time and steroid injections did help a bit, I’ve got bursitis in shoulders and hips now aswell as sacroiliac inflammation and mine goes away at night too which is strange and then I wake up and it starts again 🤷🏼♀️my T4& T3 are both at good levels and vitamins good , I have a appointment in February with the pain management clinic to see if they can help, Im in pain most days so exhausting , I’ve got Celebrex a very strong anti inflammatory but only take them when I really have to , have you had your inflammation markers checked ( bloods ) ?
Oddly enough my left shoulder is always the side that is affected. I use a computer a lot so I would expect the right side to be weaker as I’m right handed. Sometimes it’s hard to get out of bed in the morning just knowing that old familiar pain will start all over again. I’ve come to dread it.
I’ve been taking Nuramol for about 3 weeks now which can’t be good. I think the packet says you should only take for a week. But yeah, it is exhausting. Totally exhausting.
I believe steroid injections are the treatment. I opted to wait mine out. Restricting movement was crucial for me. I could use my arm slow forward movements, avoided side or upwards. Sudden movements set me back every time.
If only that was an option. I think I’d take that right now. The paramedic consultant asked where it hurt and said it must be an inflamed capsule of the arm, or something like that. She wasn’t particularly interested either way. For me, any movement above waist level feels like having a red hot poker rammed into my arm socket.
Yes, it’s OTC but you have to buy it from abroad. It’s been used for pain and inflammation particularly in Japan for years and classified as a ‘novel food’ in Europe but England banned sales because there aren’t enough studies been conducted.
It’s a proteolytic enzyme that breaks proteins into smaller compounds, particularly fibrin, scar tissue and other damaged tissue. Also shrinks fibroids and dissolves blood clots so don’t use if you’re medicating blood thinners.
I’ve used it three times, after 2 ops and once for chronic sinusitis. Also another enzyme called ‘nattokinase’ which has much the same effects. Serrapeptase is very expensive but you can get combos with other systemic enzymes that are more reasonably priced.
Firstly I think it was either caused by untreated hypothyroid or being in perimenopause and low oestrogen or the combination of both. I’m not sure how old you are but it’s incredibly common in peri also. I think starting HRT helped me in this regard. Secondly, I’d advise against the steroid injections. Whilst it gave me immediate relief it didn’t last and then you fall foul of repeating them and weakening your tendons further. I saw a top private shoulder surgeon and he recommended hydrodilatation but I couldn’t afford that. I hear it has quite good results. This led me to look at alternatives. I bought a great book called The Frozen Shoulder Workbook by Clair Davies and got a lacrosse ball and set to work. It wasn’t easy and it got a little worse before it got better but it definitely helped and after a few months it went away. I did a ton of strengthening exercises on my rotator cuff after that and still do them periodically today to keep everything strong and balanced.
Btw I’ve since started Levothyroxine some 2 years after my frozen shoulder incident and have been wondering if not being treated was the cause after all….as others have said checking thyroid treatment is optimal is a good place to start, but also consider oestrogen levels.
Thanks for that information. That’s really good to know. I am 65 so menopause is done and dusted although I still get severe hot flashes that I believe are more Hashies related. I’ll definitely check that book out though as it sounds like you have some success using that technique.
I’m afraid it took me around 9 months from start to finish and I know that’s not what you want to hear, but maybe if I’d have known I was hypothyroid I could have got it settled a little quicker. News bloods will help fill in the picture there. I know it’s incredibly painful but painkillers don’t help. Also things like NSAIDs need to be taken with omeprazole which reduce stomach acid - something you don’t want to do with low thyroid as many have low stomach acid due to thyroid! If you wanted a couple of weeks relief then a steroid injection will give you this but please read up on the negative effects of weakening your tendons with steroids. I further weakened mine, although I was putting it under a lot of stress by continuing to train in the gym.
The other thing I did was to buy various bolster pillows as I could only sleep with my arm dangling off the bed. It helped to make it a teeny bit more comfortable. I put one under my affected arm as well.
The other thing I’ve read is it can spontaneously ckear up after 6-9 months anyway, with no identifiable reason! Best of luck over Christmas, be kind to yourself and get as much help as you can x
Same with tendonitis, that can spontaneously burn itself out as well. I had frozen shoulder a decade ago, I refused surgery as the surgeon was an arse and I didnt want him anywhere near me. My frozen shoulder improved and went away after a year or, but joining a gym and exercising it definitely helped.
I can't believe it takes a year or more for it to right itself. I can't imagine this going on for that long. Just 3 weeks have been bad enough. I went to see another Paramedic consultant at my surgery today and he did at least seem more interested that the last one. Still no stronger meds though. Advised me to use an Ibuprofen gel with the Nuromol (even though that contains Ibuprofen too!) and use hot and cold compresses one after the other a few times a day. Plus exercises!
No help from me buts lots of sympathy! I’m the same at the moment and it’s driving me crazy. For once I hadn’t blamed this health. Problem on my thyroid but maybe it is related?
Same back to you! The pain is driving me crazy. I have so much to do before Christmas Day and all I want to do is sit and do nothing as every movement is a painful one. I’ve never thought it could be thyroid related as I do tend to sit at a computer a lot doing crafts. I know I don’t move my neck enough and put it down to that. However, I thought swimming 3 to 4 times a week would sort that out but it has actually made what I usually get a whole lot worse.
Fyi swimming can actually cause rotator cuff and shoulder issues, a lot of competitive swimmers have problems like this. Exercise isnt always good for you 😉
Usual pain medication does not work for me so get instant relief using small magnets (approx 6) which I attach to hypo allergenic tape and stick on painful shoulder. Magnets not expensive and re-usable. Buy in packets of which include adhesive discs but find they can make my skin sore. Also find it simpler to use tape. May work for you? Inexpensive option and NO meds so ... worth a try???
My left shoulder pain comes and goes and can be so painful it stops me sleeping. Today was really painful but had never associated it with thyroid as injured it some years ago. The posts of so many people suffering long term reminded me of how I usually deal with it. Cannot bear the thought of painful injections. So easy to do. Pain gone straightaway. So I thought it might be useful for someone else hence my response. I use small ones - a pack of 16 small magnets with 32 round plasters plus hygiene swabs to clean the magnets. Cost about £9. Re-use the magnets and store in the small plastic containers in kit. I plonk a few on a strip of hypo allergenic white tape and put on most painful part also on other painful areas of my body like knees or ankles. Hope this info is useful to you
Frozen shoulders without treatment can take up to 18 months. Cortisone injections can make things worse. Both those things are awful to hear. I have had it twice in one shoulder and once in the other. It’s definitely a thyroid issue, if you are indeed already hypo.
So treatment, non invasive and aimed at pain relief, I found in the end, was alternating cold and hot packs.
Exercise only prolonged the agony. I was initially deluded into this by paying a very expensive personal trainer. It sometimes would help for an hour or so, then it started again.
As soon as I started just being religious with the hot/cold packs I saw some improvement to both pain and range of motion (tiny). I kept any real painkillers to night time only, to help with sleep and as rarely as possible to assess improvement. Painkillers taken during the day give you a false sense of level of ability, making it easier to overdo things and further annoy the joints. ‘Bio freeze’ is useful also during the day so you don’t always have to carry a cold pack around with you. Less awkward.
The first time was worse because I did not know any of this. Second and third time was reduced to weeks.
So with no exercise, I retrieved full use of both shoulders. The second and third episodes in much less than the ‘no treatment’ estimate of 18 months. You need the help of those around you, otherwise it just perpetuates.
Oops of course most important to get your thyroid levels sorted!! And too late to tell you not to do what, hopefully you are now over and done with over Xmas.
My experience is that too low a dose of Levo caused problems.
Last year I had pain in my left shoulder and pain in my jaw when my GP reduced my Levo after the annual blood test. I got my prescription back up again and the pain went. Wasn’t sure if the two things were connected but this year a similar thing happened: annual blood test - text saying ‘we’ve reduced your Levo’ - this time I had groin pain which would happen suddenly while I was walking and the jaw pain/feeling that it was about to dislocate, happened again, so definitely connected, I decided. Again my prescription is back up and the pains have gone.
Apologies . Was tired and late last night when I replied. Magnets can stop pain in its tracks which can wear off after a while - up to hours later. You can renew with fresh plaster and another set of magnets. Some pain is so severe that the magnets alleviate the pain to more bearable levels. My body is very pain ridden for various reasons - accidental injuries, fractures from osteoporosis, arthritis and from no thyroid - total thyroidectomy. How I miss her!! Usual pain meds don't work for me. Had to find other ways of dealing with multiple pain issues. Tried everything and so came across magnets through trial and error. They help me. I hope they help you.
NB Plasters including hypo allergenic tape can cause soreness, rashes and even blisters on sensitive skin such as hip area. Well that's my skin and my experience. You might be luckier.
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