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.
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 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.
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