Recently started on Levothyroxine, now a lot of pain and stiffness

Hello All

I probably should start by saying that I have always enjoyed reasonably good health, and have only been to the doctor a handful of times in the last 20 years, however I chose to have a private health check back in April as I had just turned 50 and had never really had a thorough check before, the results were mostly good other than high cholesterol (7) and also being advised that I have an under active Thyroid, unfortunately BUPA did not give me the printed results of my thyroid test. They sent the results on to my doctor and advised me to see my GP.

When I saw my doctor he gave me a prescription for 50mcg Levothyroxine and sent me for more blood tests. Up to this point the only real Hypothyroid symptoms I had noticed was a lot of fatigue as well as constant tiredness, however within a week of starting on the levothyoxine I started to get muscle and joint pain, after 3 weeks this had got progressively worse and I really was in a lot of pain and having difficulty trying to sleep due to the pain, in my fingers, elbows, shoulders, hips, knees and ankles as well as in the muscles in my arms and calves.

At this point I went back to the GP, he seemed surprised at my problems and agreed that it did seem rather a coincidence that this all started at the same time as starting on the Levothyroxine, he told me he would cut the dosage in half to 25mcg Levothyroxine, this was 2 weeks ago, however although the pain has improved a little I am still in a lot of pain and not able to go to the Gym or use my mountain bike and having to take the maximum dose of Ibuprofen every day to help dull the pain.

The GP said that if the pain did not subside by the time I see him next time (16th June) they would have to do further tests to see what the problem is. However to me it just seems far too much of a coincidence that all this starts at the same time as I start on Levothyroxine and I am convinced that there is nothing else wrong, I really do not want to go down the road of all different tests and drugs to treat the (side effects?) problems caused by Levothyroxine.

I really am at a loss of where to go from here, I have gone from being a relatively healthy and fit (albeit little overweight) 50 year old to feeling like I have the crippled body of an 80 year old all in just over 5 weeks!

As of yet I have no test results to post up here, but when I see the GP next in 2 weeks time I will ask for a printed copy of the 2 sets of results he will have by then.

Sorry for such a long post, but any advice would be much appreciated!

Thanks - Paul

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30 Replies

  • I was more or less exactly like you. I had never had pain and stiffness until I was given levothyroxine. If you are still on 50mcg of levo it is probably far too low for you.

    It is now you will learn that GPs have very little knowledge of treating patients with thyroid gland problems, other than referring to the TSH and if it is 'in range' they believe any other problems is nothing to do with you thyroid gland and may go on a 'round-about' of other medications to solve the symptoms, when in fact you need a decent dose of thyroid gland medication. Higher cholesterol is a clinical symptom of hypothyroidism and will come down with medication. Pains/aches/insomnia the list goes on and on.

    There is a Thyroid Summit on today and you can listen to the initial video (sound only) and it is quite informative. This is the link below. We have to read and learn as much as possible in order to recover our health and I am glad to say that we can get better.

  • Thanks for your reply, I am actually on the reduced daily dosage of 25mcg Levothyroxine still, and have my next blood test and GP review due in 2 weeks time.

    So you think that my problems are possibly caused by a much lower dose of Levothyroxine than I actually need, I will suggest this to my GP when I see him, as I said before I really do think the Levothyroxine is to blame for all the pain and stiffness I am suffering with and just cannot accept that there is something else behind it..

    I'm desperate to at least get rid of the constant pain as my quality of life has just plummeted in the last few weeks.....

    I will be sure to get copies of all my test results on my next GP visit, unfortuantely I can see from the paperwork I have he has only requested a TSH test prior to my next visit so I guess a request for T4 and T3 testing would be useful.

  • This is an excerpt from an archived website as Dr Lowe die 2 years ago. So some of the links within may not work. If you cursor down to date November 28, 2003 you will see Dr L's response to a question.

    The aim of medication is to reduce your TSH to around 1 or lower although some may prefer a higher TSH. If your TSH is within range the labs may not do T4 and they rarely do T3 unless TSH is out of range.

    Maybe if you were very frail would they give you a small dose. The first and last questions on this link are informative:

    Levo should be taken on an empty stomach with 1 glass of water and don't eat till about an hour later. Don't take it on the morning of your blood test, take it afterwards, leaving 2 hours either side before eating. Some people prefer bedtime dosing.

    Have blood tests as early as possible and always get copies with the ranges.

  • Thanks for your helpful reply and links, very informative. I had been taking my tablet first thing in the morning with water and not eating or drinking anything else for at least one hour.

    Yesterday and last night I was in so much pain, that I made the decision to stop taking the Levothyroxine, and so have skipped it this morning, I will not be taking it again in the near future, but will still see my GP on 16th June and see if he is able to try a different medication.

    I am hoping that within the next week or two I will get back to reasonably good health again and without pain!

  • I doubt if your GP will prescribe anything other than levothyroxine as that's what the guidelines of the British Thyroid Association state as the perfect hormone replacement. It does suit many but most of us on this site have had problems. I myself now take T3 alone and am in good health. I also took a Natural Dessicated Thyroid Hormone which was the original before the generic levo was introduced and was fine too.

    Levo takes about 6 weeks to leave your system so if your pains/aches improves it is the levo which is the cause. Pains and aches can also be caused by an underactive thyroid.

  • Hi i have done the exact same thing.called my dr and told them im stopping my. Meds as of today. Tired of the pain in my lower butt i have felt tired with waking up with a headache every .orning. So tired hate meds

  • I was on Actavis 50mcg and had a heart attack in Jan 2014. Cardiologists still aren't clear why I had one but I had no blockage and arteries all clear. I was reduced to 25mcg and went onto Wockhardt brand. I had pains and all sorts of horrible feelings. I was confused thinking it was the heart. I got a horrible internal vibration. I read that different brands have differing side effects and there is also a colouring used in all levothyroxine except 50mcg. So I changed back to the Actavis 50mcg which I broke in half. My internal vibration stopped and so did a lot of my pains. I now suffer from anxiety. I am due for an appointment at The Peatfield Clinic on Wednesday and I can't wait to get on top of this, my doctors are completely ignorant about the thyroid and say I am fine but the nutritionist I see said I am hypo. I also find that foods affect me as does gluten and sugar. I eat now for my heart and thyroid. I have had hypo thyroid symptoms since my children were born 15 years ago. I put it down to children and birth etc. My doctor has never tested my T3 levels, only T4 and TSH. Do research yourself but look into brands, colouring, diet, proper testing involving temperature and go and see an endocrinologist who believes its more than just blood tests. Good luck, research is important especially from sufferers as you get a lot of info from the forums.

  • To add to Shaws informative response, it is important that you always have your blood results and their corresponding lab ranges, not only so that you may post them here for an informed commentary but so that you have the right information to take care of your health yourself - so many GPs are insufficiently informed or have only a narrow view

    about what constitutes good thyroid health & healthcare.

  • Thanks, I will be asking my GP for copies of the tests done to date on my next visit, I'm only just getting to understand that this Thyroid problem may be a lot more complex than I had originally thought. So much for taking a daily tablet and forgetting about it...

  • Most likely you will quickly develop an instinct for whether dose is enough, not enough or too much - a bit like knowing if you've eaten too much, not enough, or just right. Follow your instinct, you'll soon know if you're right and if you've got a good GP, they'll listen.

  • Paul,

    You may have reacted to the fillers in Levothyroxine (T4). If you took Actavis or Mercury Pharma it is worth trying the alternatve and see if you feel improvement. The fact that your pain has decreased on 25mcg (which is usually Wockhardt) may be due to the 50mccg T4 leaving your system (it takes 8 days) rather than the decreased dose. If you take an antihistamine an hour before your T4 and it helps, your problem will be the fillers so it will be up to your GP to look outside the generic T4 for a branded version with fillers you can tolerate.

    If you are unable to tolerate Levothyroxine your GP should prescribe Liothyronine.

    I proved that Levo was causing my fibro pain and a host of other problems when I stopped taking it for 12 weeks. All pain and symptoms subsided but returned when I resumed taking it until I added Liothyronine (T3) which calmed the T4 side effects.

    When you have your next blood test ask for ferritin, vitamin D, B12 and folate to be tested. Levels seem to drop a year or so before hypo symptoms present and we need them high in range.

  • Thanks for your reply, I have this morning made the decision to stop taking the Levothyroxine, the pain and stiffness has just got too much to bear, I feel like I have lost my quality of life completely.

    When I see my GP in 2 weeks time, I will see if he is able to offer something different as I am obviously not able to keep taking what he has given me so far!

    I will also ask him to get the additional tests added to my next blood test.

  • Paul,

    If Levo caused your problems you will start noticing an improvement in your symptoms within days. I suggest you keep a symptoms diary to back up your claim to your GP. A liquid form of Levo won't have fillers and may suit you but it is comparatively expensive and you may find your GP unwilling to take the hit on his drugs budget. has a list of alternative thyroid replacement. Aliud from Thybon Henning is recommended by several posters. I'm not sure whether it is licensed in UK but GPs can prescribe on a named patient basis and there templates available on TUK.

  • Hi

    I just read your post and I'm really struggling with hip, buttock, adductor, shoulder and knee pain and stiffness. It all started in June this year 2015. I have been on levothyroxine for 9 years with no problems . The dr increased my dose two weeks ago due to me being low and hoping the pains would go. The pains have not decreased and I wonder if it's the fillers ? I'm taking actavis

  • Gb98, if you've been on Actavis for a while it's more likely the pain is due to undermedication rather than fillers.

    Ask your GP to test ferritin, vitaminD, B12 and folate. Low iron and vitamin D deficiency can cause considerable musculoskeletal pain. My hip and knee joint pain completely resolved when my vitD deficiency was corrected.

  • Thank you. I have a feeling I was on Mercury for years and the chemist changed to actavis a while ago. It's only a hunch as I thought the packaging looked different. They increased my dose from 150 to 200 two weeks ago and no sign of improvement at all. It s do debilitating I sttuggle t bags the kids. In May I was in the gym riding my bike at weekends. Now I struggle to get out g bed and put my socks on

  • Gb, 50mcg is a large increase and suggests you were very undermedicated which causes pain. You can ask your pharmacist to order Mercury Pharma for you if you prefer it to Actavis.

  • I'm just guessing, the pain has been going on since June and the increase has been two weeks and no improvement. I was hoping for something and now think is it the Levo itself ??

  • Gb, It takes 7-10 days to absorb an increased dose of Levothyroxine and up to 6 weeks to feel the full impact of the increase so it's early days yet.

    I'd check out your vitD levels. If your GP won't do it you can order a private test from City Assays via

    I think you would have had the pain years ago if Levothyroxine was causing it.

  • Thank you, the stiffness in my knees and shoulders is unbelievable. I'm going to ask to change from actavis to Mercury. Got to try something the stiffness every morning is unbearable. It's like I've seized up. Woke at 4 am and can't sleep because of discomfort

  • Hi

    Vit D was 110. Dr dismissed T3 totally. Looks like there going to inject steroids directly I to tendons. I'm going to ask for a T3 test before they inject me with steroids

  • Gb, vitD 110 is very good, in the replete range 75-200. Absolutely rules out vitD deficiency causing the pain.

    When TSH is high FT3 is usually low. I imagine TSH was high for your Levothyroxine dose to be increased by 50mcg. If low FT3 is causing pain, pain should improve as FT3 improves on the increased dose. As I said, it will take 6 weeks to feel the full impact of the dose increase and symptoms may lag behind good biochemistry by up to 6-8 weeks.

  • July TSH 8.3( 0.35-5.5)

    T4 14.1(10-19.8)

    Aug TSH 6.35 (0.35-5.5) T4 13.5 ( 10.0- 19.8)

    All Drs say t3 insignificant so they don't do it.

  • Gb, goes to show how little they understand thyroid. T3 is the active hormone, without it, or when low, we feel hypothyroid.

    I'm not surprised you're in pain with TSH >6. Most people feel well with TSH around 1.0 and FT4 in the upper range.

  • It's only my tendons though. Started in Lower back and hamstrings just stiffness like I had worked out the day before. It then spread to hips, adductors and groin. After two weeks groin pain went and shoulders and knees stiff and painful. it's the tendons that hurt. And when I wake my knees and shoulders are like I have rigermortos. Once I get them moving they free up and the pain eases. Other than the tendons which is making life difficult I feel perfect, not fatigued just fed up with tendon pain. How odd ?

  • Just checking, the doc didn't put you on statins for the raised cholesterol? Statins can cause problems and as earlier post said cholesterol should come down as thyroid problems are treated with T4

  • No I have not been put on statins, I do not take any other medications at all.

  • Paul

    What was your outcome ? Your initial post sounds exactly like what I'm experiencing. I have pain in my buttocks, hips, adductors , knees and shoulders. When I wake my knees and shoukders are as stiffed as boards. However, I have been on levothyroxine for 9 years with no problems until June this year.

  • Seeing Endo tomorrow to see what's next. Looks like they want to inject my tendons with steroids. I'm sure it's something to do with my thyroid but all the Drs dismiss it. Feeling fed up

  • i have been on thd same medication ..i have had headaches and now my lower butt has been hurting all the way down my leg almost.i have been feeli g tired also.i called my dr and told her im stopping my i hurt so gonna wait a few days befor i go to the dr

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