Recently started on Levothyroxine, now a lot of... - Thyroid UK

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

paul_w123 profile image
76 Replies

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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shaws profile image
shawsAdministrator

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.

thethyroidsummit.com/schedu...

paul_w123 profile image
paul_w123 in reply to shaws

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.

shaws profile image
shawsAdministrator in reply to paul_w123

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.

web.archive.org/web/2010103...

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:

web.archive.org/web/2010103...

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.

paul_w123 profile image
paul_w123 in reply to shaws

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!

shaws profile image
shawsAdministrator in reply to paul_w123

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.

Fre2play profile image
Fre2play in reply to paul_w123

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 ..plus i have felt tired with waking up with a headache every .orning. So tired hate meds

wsenior profile image
wsenior in reply to paul_w123

Hey Please let me know if your muscle tightness, pain, soreness and stiffness has improved. I have been feeling this for almost 2 years. I've taken T4 (Levothyroxine) alone, I've taken T3 (Liothyronine) alone, and a mixture of the 2. I've felt slight differences but nothing has gotten rid of my exaggerated soreness, stiffness, and pain. I've read that Hypothyroidism progressively changes our Type II muscle fibers into Type I fibers.......I was always the guy doing hill sprints and lifting heavy weights.....so it affects me a ton. I can hardly jog on grass as it feels like broken glass fills my calves and legs. I'm thinking about going off of all Thyroid med's to see if I feel better as well. I've been taking them for 6+ years and i'm 45 years old.

A_yeldarb profile image
A_yeldarb in reply to paul_w123

I suffer from immense pain due to levothyroxine. I need to find a different medication. I’ve keep going back and forth between hypo and hyperthyroid states for twenty years. I have Hashimotos disease and varying autoimmune thyroid scores. They’re at times very high and sometimes within the normal range. When my blood scores indicate I am hyperthyroid, I quit taking the Levothyroxin and the pain and stiffness goes away. Eventually as my blood scores begin to rise again I start taking a low dose levo again. Almost immediately the pain and stiffness returns. There must be information somewhere as to why.

Sugarplums profile image
Sugarplums in reply to paul_w123

Hi Paul,

Did you ever get your joint pain sorted out? I have been taking levothyroxin for almost 2 years, some adjusting of dosage along the way. I’m currently on 100mg. I have no thyroid from radiation. Anyway, about 3 weeks ago I woke up with sudden aches of all my joints. My fingers and wrists so bad I could barely open the synthesis, my knees, and ankles. I’m on prednisone and waiting to see if it’s rheumatoid. I have no redness or swelling but pain. I am 51, not an ache prior, and had to put my gym pass on hold. Did you figure out your problem?

Thanks!

Sugarplums

Sugarplums profile image
Sugarplums in reply to Sugarplums

0.1mg rather

helvella profile image
helvellaAdministratorThyroid UK in reply to Sugarplums

You may not realise that you can edit any posts or responses you have made here.

HealthUnlocked have produced a simple demonstration of how to do this. You can find this here:

support.healthunlocked.com/...

I am pointing this out purely to ensure that you know your options. :-)

(If you make extensive changes, it is sometimes helpful to add a comment so that people can see that you have made changes.)

Dramlouie profile image
Dramlouie in reply to paul_w123

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.

paul_w123 profile image
paul_w123 in reply to

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...

Aurealis profile image
Aurealis in reply to paul_w123

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.

Clutter profile image
Clutter

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.

paul_w123 profile image
paul_w123 in reply to Clutter

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.

Clutter profile image
Clutter in reply to paul_w123

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. thyroiduk.org 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.

Gb98 profile image
Gb98 in reply to Clutter

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

Clutter profile image
Clutter in reply to Gb98

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.

Gb98 profile image
Gb98 in reply to Clutter

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

Clutter profile image
Clutter in reply to Gb98

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.

Gb98 profile image
Gb98 in reply to Clutter

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 ??

Clutter profile image
Clutter in reply to Gb98

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 thyroiduk.org.uk/tuk/testin...

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

Gb98 profile image
Gb98 in reply to Clutter

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

Gb98 profile image
Gb98 in reply to Clutter

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

Clutter profile image
Clutter in reply to Gb98

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.

Gb98 profile image
Gb98 in reply to Clutter

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.

Clutter profile image
Clutter in reply to Gb98

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.

Gb98 profile image
Gb98 in reply to Clutter

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 ?

Print1972 profile image
Print1972 in reply to Gb98

Hi. I just read this, and I'm having exactly the same problem. I've been on Levo, for 5 months and my Achilles, feet and calf's are very sore. Once I get moving, the muscles improve, apart from the achilles tendon.

LeeKirsten profile image
LeeKirsten in reply to Clutter

I took the junk for almost two years, with NO noticeable improvement in energy, weight, hair, depression- as the PA seemed to think this would be a cure all of sorts for every mild malady I had. It was not. An INCREASE from .25 up to I think .75 now only resulted in sudden and highly annoying joint pain and muscle stiffness that I cannot attribute to lack of stretching or old age. I am not quite 50, and my female hormones let me know monthly that I am still producing younger-woman hormone levels. I tested my theory by stopping the meds. WIthin 5 days the symptoms were very mild. I started the meds up again to test my theory further. The pains came back in full force within a week to ten days. I am done with Levo. I was only 'borderline' low to start with, and I feel that doctor's are on the Vitamin D and thyroid bandwagon in the US.

patjoy profile image
patjoy in reply to Gb98

Hi I too have been on Levo for years but it was increased by 25mg recently and the pains started, I feel weak and tired all day and have terrible pains in my legs at night,I have stopped the extra tablet but the pain persists and am going for a blood test this week. This seems a common problem, but we are told Levo is a natural hormone. ;rubbish, ;who can help us. ;drs dont really want to know. Best wishes Pat H

morehead profile image
morehead in reply to Gb98

I have been doing good until last few days. They increased my synthroid to 100. Fast heartbeat chin bones aching when I go to bed.

VintageLife profile image
VintageLife in reply to Clutter

The T3 cytomel is what is making you feel better and taking the edge off the bad affects of the T4 medication. Ive been going through this for 20 years. My medical issues no one can figure out. Or the Endo tells me the symptoms and problems I have are "impossible".

T4 medications make me feel worse...all the symtoms get worse...the higher the dose...the worse they get! So the increasing your dose to get rid of the muscle pain and stiffness....the only way I got rid of it was to stop any T4 medication. Even the ones for people sensitive to the fillers etc etc etc...But synthroid was the worst.

I dont know why....wish I knew why....but on T4 my muscles feel like I had a major work out at the gym, sore and stiff. I hadnt taken it for years and my levels are off and new DR wanted me to try 1/2 of the lowest dose....and the same thing happened again.

WISH SOMEONE COULD TELL ME WHY Though.

The ONLY thing Ive found that gives me any normalcy and improvement is the T3 Cytomel. But End dr are all have extreme different opinions of that medication. Confusing. All I know is Im the closest to "normal" on it.

crimple profile image
crimple

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

paul_w123 profile image
paul_w123 in reply to crimple

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

Gb98 profile image
Gb98 in reply to paul_w123

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.

LeeKirsten profile image
LeeKirsten in reply to Gb98

Mine started after about 1 1/2 years on it, but really after the dosage increase, done mainly not on blood levels, but because I told the Physicians that the Levo didn't do a thing for me that I could perceive. SO they upped the dosage. I began to have a lot of hip pain, hamstring tightness for no reason despite stretching and having recently been in great shape, running a half marathon and being unusually flexible. Then came the knee pains, hip pains, lower back. I thought it was due to some running injury. I had never run prior to age 42, and the 1/2 marathon was the culmination of my efforts, after which I tapered off running almost entirely. (that could have something to do with some of the stiffness, granted) . Understanding that there may be many factors to what I was experiencing ,I redoubled my stretching routine, ate right, took a good multi, saw a PT specialist. Then I injured my knee walking a Rottweiler downhill who wanted to run. I don't blame the Levo for that. But then there was the wrist pain, elbow pain, continued calf and hamstring pain, ankle pain, etc. etc. I decided to go off the Levo as a test. A week later, most of those pains, other than the knee, were gone or minimal. Not wanting to deprive myself of something I MIGHT need, and wanting to continue my test, I refilled my prescription. Ten days later my lower back and hip hurt so much I started on Tylenol and Aleve. I quit the Levo again, it's been about a week now since my last dose. Lo and behold, the aches and pains are minimized again. Coincidence ? I think not.

Gb98 profile image
Gb98

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

Fre2play profile image
Fre2play

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 med..now i hurt so gonna wait a few days befor i go to the dr

winjy profile image
winjy

I am levothyroxine for 5 years. Exact same symptom to mine.

Pain on my body (leg cramps, pain on hip, thigh, butts, shoulder & arms) and stiffness (seizure) including other side effects (heart issue, anxiety, bad blood circulation, hair loss, increased pulse, rash, food sensitivity, muscle weakness)!

Can't sleepand can't exercise. I am in my 40's but my health condition is like I am 80 and make health worse everyday. I sweat less with lower dosage of T4. Doctors do not want to prescribe natural thyroid hormone.

VintageLife profile image
VintageLife in reply to winjy

Get off of T4 and try T3 medication ...Cytomel

activelazy profile image
activelazy

Hi

I know it's an old post but how are you now? I have been on levothyroxine for 9 months. I thought I was improving. For last few weeks though I have a lot of pain in my elbows. Been checked for rhemotid arthritis came back negative.

I have stopped levothyroxine 5 days ago to see if things improve. I am really struggling with my arms. My knees that already had problems much before starting levothyroxine, have not gotten worse. Just my elbows, I am perplexed.

Leeki1 profile image
Leeki1

I’m tired to death of my symptoms because they very

Much sound just

Like yours- and this has come since my bump UP to .75. For me it feels like that taking more poison to stop the problems the poison started makes no sense. My life was fine ( like you- a lot of fatigue- I still have that) and I am willing to try anything - like stopping the Levo! - 49/F/Oregon

LeeKirsten profile image
LeeKirsten

I am 49, started Levo .25, which got bumped up over the years . I was only 'borderline" when I began taking it, and never felt ANY difference in any aspect of my health while taking it. Recently, and not too long after being bumped up to .75, I began to notice an overall and sudden joint ache all over my body, with various spots being more painful than others, occurring at seemingly random junctures in time. I am female, and near 50, but still have my cycle and am at most perimenopausal, though in reality, I am still pretty regular. I say this because I understand that our joints and bones change as we get older and hormone levels drop. Having said that, I also recognize that this was a very sudden change, and that my hormones haven't changed much yet. SO, I decided to stop taking the Levo. My joint aches and pains greatly diminished. As a test, to be sure it wasn't my imagination, I started taking them again, and just quit again 3 days ago because- once again, the random pains and also muscle aches were beginning with no rhyme or reason . The only factor seems to be the Levo. I am done with it. Negligible returns and most probable side effects. Not many have heard of this. Most say - Oh, your levels are still too low, don't stop the meds your DOCTOR prescribed, it could be disastrous. To which I say, Doctors don't know everything, and bollocks. I don't need MORE of this, I need none. I have been searching for others who have had the same situation, and found this forum. I know now that it's not just my imagination. Thank you !

Rudy1 profile image
Rudy1 in reply to LeeKirsten

Lee- I have started having the same issues with my Synthroid.

Severe knee and elbow pain. My gp and a specialist do not believe me.

I stopped taking my medicine and now I'm losing my hair. I had to start taking it again. Be in pain or have no hair. Have you found a solution to your issues?

VintageLife profile image
VintageLife in reply to LeeKirsten

Yes, same story for me. Cytomel (T3 ) is the only thing that helps me. One Dr told me its because my body is not converting the T4 to T3....

But I think its got to me something more than just that....I just dont know what.

All I know is T4 meds have severe negative affect on me.

Cytomel is the only thing close to normal and good I have felt.

Gardenofeden profile image
Gardenofeden in reply to VintageLife

Pls, how much Cytomel r u taking?

helvella profile image
helvellaAdministratorThyroid UK in reply to Gardenofeden

Many people find it difficult to read things written in text speak. That is why we have a guideline requiring posters to avoid it. Please just use ordinary English.

31. Do not use 'Text Speak' when posting or replying.

healthunlocked.com/thyroidu...

Catfink profile image
Catfink

Paul, did you ever find an answer to these pains? I have exactly the same problem after starting on levo a couple of months ago

blues2 profile image
blues2

A few months ago, I was started on Synthroid 50 mg. 2nd lab work was normal levels. Then while on Prednisone, labs showed TSH to be same as it was with first lab work so doc gets bright idea to raise my dosage to 75 mg. In less than a week, I went to ER for severe joint and muscle pain in every joint of my body except for ankles. It was agony to even turn my steering wheel, to pick up a plastic cup. ER doc lowered my dosage back to original dosage of 50 mg, and another round of prednisone for the joint pain which was Sat night, now it is Monday morning. The pain is essentially gone, don't need to use pain pills, but still taking 50mg synthroid instead of the 75 mg. Of course, called doc and left msg with nurse. It takes about 6 wks for levels to get back to normal bc of prednisone use. Very little discomfort now. What is it with this 75mg of synthroid causing same problems for those who have been put on it.

blues2 profile image
blues2

I went to doc after having to go to ER for severe joint pain. She had insisted on my continuing the increased dosage after the severe joint pain episode. We discussed her logic which I totally disagreed with, made no sense, However, as we went over the meds I was taking at time of dose increase, she mentioned that I had also been on and near end of taking Bactrim for a UTI when the new dose was started. Bactrim seem to be tne culprit rather than the increase in Levothyroxine or Prednisone. I am continuing the taper dose for Prednisone, and continuing the increase to 75 mg of Levothryoxine. Now that the Bactrim has been completed, had time to get out of my system, I have now been on new dose since ER for 4 days without any issues surrounding the joint pain I had endured. Doc will no longer order Bactrim for me. Doc does not address it so much as allergic reaction but that I apparently am super sensitive to the Bactrim.

anonymouswoman profile image
anonymouswoman

Paul I have had the exact same issues, I have felt like someone beat me with a baseball bat. My doctor is cutting my dosage back to 25mg also.

Rudy1 profile image
Rudy1 in reply to anonymouswoman

I have the same issues. Neither doctor I've seen believe it's synthroid. I know it is. I stopped taking my medicine and my hair started falling out, so I had to start taking it again.

I hope you find a solution.

Stephanie12345 profile image
Stephanie12345 in reply to Rudy1

I stopped my levo yesterday and pray it does not make my hair fall out! :-(

Stephanie12345 profile image
Stephanie12345

I have been on Levothyroxine for 6 months and I am exhibiting the same symptoms you were plus weight gain. I told my doctor on numerous occasions only to be told to go on a diet. Note: (I weighed 102 pds my whole life until being put on levothyroxine) and like you I have always been very active, workout at the gym but now I can hardly walk as I am in so much pain.

I spoke with my GP this week "Again" about all the pain I am having in my muscles, joints and feet...her response was to send me for x-rays and an appointment to see a podiatrist.

I feel like the doctors do not listen to their patients! I have told my PCP enumerable times, I did not have any of these issues prior to starting levothyroxine...So, I stopped taking the levothyroxine a day ago to see what happens ie: to see (if the pain subsides and if I start to lose weight). I have scheduled an appointment to see an Endocrinologist.

melle profile image
melle in reply to Stephanie12345

Hi Stephanie, I'm just wondering if stopping the levothyroxine helped you? I have morning stiffness in fingers and feet that started when I started on levo. Thinking maybe I should go off just to see.

wsenior profile image
wsenior

Former Super Physically Active Man - height: 186cm weight: 99kg - age 45

I hope this can help others and I hope your feedback can help me.

My History (Present Day December 2018):

5 years on 100mcg-T4 alone.

1-2 years on 100mcg-T4 + 25mcg-T3.

6 months on 50mcg-T3 alone.

* Also on low level TRT since 2015 (Nebido or Testoviron)....could be a factor? I've heard that Testosterone can lower your absorption of Thyroid med's....meaning I needed a higher dose. Not sure about that.

The first few years my only symptom was fatigue. Then, about 3 years ago sometime in 2015 new muscle symptoms appeared. I used to do a ton of intense exercise 5 or 6 days/week: Heavy weightlifting, Pullups, Hill Sprints, Track Sprints, Medicine Ball Drills, etc... Little by little my muscles became stiffer and stiffer. I responded by doing a longer warm up and stretching routine which helped me a little (mainly in avoiding injuries). It continued to get worse and even jogging became torture, it felt like broken glass was in my muscles (calves, soleus, groins, forearms, biceps, and worst of all my hamstrings). After weightlifting I would get the worst soreness of my life for 7-10 days afterwards making a routine impossible.

Over time, my "warm-up" became my "workout" as it was all I could do to try and preserve mobility and a sense that I was using my body. The only relief was to stop all exercise. Present day, for the last 5 months I found I could do a pool-workout without much pain afterwards......circuits of running/swimming in the shallow portion of the pool. I also think the cold water made my Hashimoto's inflammation less and allowed me a partial reprieve in the water.

Since 2 days ago I am taking 250mcg-T4 alone (was on 50mcg-T3 alone the last 5-months). This is an experiment to see if my muscle pains, stiffness, exaggerated soreness will go away, to see if this all started because my T4 dose was too low. If it doesn't work, I will be going off all Thyroid to see if it helps.

So far I feel sluggish on T4 and have more emotional swings. I have that crash at around 8 pm that sends me to bed or immobilized on the couch. I did pullups yesterday and will try and do squats today......to see what soreness occurs. I will know the difference between normal soreness and the exaggerated response I had the last few years.

Thanks for reading if you made it this far. My responses will be shorter.

Walter

cutegeo profile image
cutegeo

Hi Paul and Walter...

I saw your posts and I am interested if you ever found out what was wrong and if you have found relief. I have experienced the exact same symptoms. I am 58, in fairly good shape, active, agile. In a two week period, I went from doing Yoga/Pilates two to three times per week, hiking, backpacking, sailing, riding horses.. to not being able to move without pain. It started in the backs of my legs, then moved into my lower back and then up to my upper back, shoulders and arms. It is worse at night after not moving for awhile if I try to turn over in bed or get up. It feels like I'm tearing my muscles apart. I've been taking Levothyroxine and Liothyronine for several years with no ill effects. The only thing that changed is my pharmacy started getting the Levothyroxine from a different manufacturer. No one seems to think that has anything to do with it. I've seen a regular doctor and now an endocrinologist. They are clueless. I've had a slew of blood tests and everything is 'normal'. Except I can't move and my life has pretty much come to a standstill. The Endocrinologist suggested Fibromyalgia, but it seems like that may be a catch all when all test show nothing. I'm appreciative of any light you can shed on this. This happened over two months ago and I'm pretty scared.

Thanks!

Valerie

llawleht profile image
llawleht in reply to cutegeo

Hi Valerie

In your post you say the only thing that changed was your pharmacy started getting the Levothyroxine from a different manufacturer, i would be interested to know which manufacturer / brand this was. I had similar problems in 2017 and only down to this forum i realised what the problem was.

cutegeo profile image
cutegeo in reply to llawleht

Hello llawleht,

The new manufacturer is Lannett. Unfortunately, I don't know the original company. I will have to ask my pharmacist. Are you still experiencing the muscle pain and stiffness?

llawleht profile image
llawleht in reply to cutegeo

Hi Valerie

I have never heard of Lannett; are you in the UK. The brand i had problems with was Teva (New Formula) introduced Oct 2016, i had muscle/joint problems from my legs to my shoulders. It has taken many months to start to feel improvement. I have been on Levo for over 10 years and never experienced this before. My GP now requests another brand on my prescription.

helvella profile image
helvellaAdministratorThyroid UK in reply to llawleht

Lannett levothyroxine is the same product as Unithroid. Levothyroxine tablets in the USA.

See dailymed.nlm.nih.gov/dailym...

cutegeo profile image
cutegeo in reply to llawleht

Hi llawleht,

I'm in the US, in California. Same here, I've been taking Levo for years. It sounds like you have gotten some relief and I hope your life is back on track. If it's anything like what I have been experiencing it's pretty miserable. I feel like I'm in someone else's body. I typically see a Naturopath and he suggested getting the Levo from a compounding pharmacy instead. I've been taking that new prescription now for about two weeks and haven't seen any change. I also take Liothyronine and am going to ask about maybe going off Levo and just taking that. Seeing a rheumatologist in a couple of weeks. We will see. Thanks for contacting me, I have hope now that maybe it's the Levo that's the problem and maybe I will be able to get my life back. I hope you continue to improve and keep me posted.

llawleht profile image
llawleht in reply to cutegeo

Hi Valerie

I hope you can get sorted and feel well again. It is frightening when you lose confidence in a medication you need to take for life. There was a similar problem in France in 2017.

cutegeo profile image
cutegeo in reply to llawleht

Hi llawleht,

Thank you. All the best to you as well.

Jendezee profile image
Jendezee in reply to cutegeo

Hi Valerie and llawleht,

I too have terrible muscle tightness in my upper mid back and my ankles and calves. I have had this pain for almost a year. I was on Armor (desiccated pig thyroid) for 2 years but was tired all the time. I went to a seminar and the Endocrinologist said she never prescribes Armor, only Levothyroxine because it is more reliable. I have tried chiropractic care, deep tissue massage and muscle relaxers with no relief. I am 47 years old and feel like I am 90. Have either of you talked to your endocrinologist? Just wondering what they may have said is the issue. I have an appointment coming up but my endocrinologist isn't the greatest about taking the time to answer my questions. In her defense she is the only endocrinologist - I had to wait 9 months to get in with her as a new patient. I just wonder if I need to increase my dose or decrease my dose. Increasing has me concerned because I don't want the constant pain to get worse. I have had blood work done, all normal except my inflammation markers are really high (probably why I have so much pain). I have had a CT scan of my spine, all normal. Sometimes I feel like my general practitioner thinks I am a hypochondriac. I have always been rather healthy until I was diagnosed with Hypothyroidism. Thanks for your time and consideration.

llawleht profile image
llawleht in reply to Jendezee

Hi Jendezee

I have been on Levothyroxine for over 10 years which is managed by my GP so i am no longer under the care of Endocrinologist. The problems i experienced in 2017 were caused by the Teva (New formula) brand which was reintroduced in October 2016. GP now requests Wockhardt brand on my prescription. I am sorry but the only information i have gained is from this forum where so many posts say it is usually the fillers that cause some people problems with certain brands and that it is best to stick to one brand that suits you.

Hope you can get sorted.

Jendezee profile image
Jendezee in reply to llawleht

Thank you Ilawleht! I am on Lannett brand. I am going to request being put on a different brand.

AsteroidMint profile image
AsteroidMint

Been having the same problems. I wake up at 6:00 am to go to the bathroom and my legs work fine...take my synthroid and an hour later, my legs are so stiff and sore I can barely move! Had to resort to using a shower seat as I can not stand in that shower. My legs get better and better as the day goes on. Nighttime I feel half way normal. My thyroid has also enlarged and my TSH was 4.34. So my doctor puts me on more synthroid up to 0.1 mg. I am so sick of this stiffness and weakness in my legs and my back and I am getting it in my butt and my ankles as well. As someone said I'm only 43 but I feel like I'm 83! A couple months ago I was walking like crazy and then all of a sudden this happens? What is going on? Am I intolerant to synthroid now?

Trevie profile image
Trevie in reply to AsteroidMint

That is EXACTLY what is happening to me. And I’ve been on synthroid for over 25 years. Have you found out the cause yet?

AsteroidMint profile image
AsteroidMint in reply to Trevie

No but I seem to be better now.

morehead profile image
morehead

I did the same thing and he lowered my and felt better.

Raali profile image
Raali in reply to morehead

Hi there! i am having the same issue. How much were you taking and how much did your doctor lower yours? I am in the same boat having a lot of pain ever since starting my medication.

morehead profile image
morehead in reply to Raali

I was 70ish and he took me down to 50's. I started my 100 this morning.

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