is anyone getting joint pain while on levothyroxine? A few months after starting my knee began to hurt then my shoulder went and now my back, is it linked? feel like I am about 100
I'm not sure my experience will help but wanted to reply while you waited for someone with more helpful experience to pop on.
I'm sorry to hear about your joint pain. I've been on levothyroxine since my TT op in June and I actually found the opposite. Before my diagnosis I had terrible joint pains (amongst other stuff) and now I'm happily finding that's gone! I know people have reported all sorts of symptoms whilst on levothyroxine though. Have you asked your CNS? How are your TSH/T4 levels looking? I'm learning fast how many symptoms can be caused by those being off!
Thank you so much for replying, I actually had test results yesterday TSH 0.04 FT4 24.6, I have to admit to really not understanding the results, i just know they keep you on a high dose for the first year after cancer, he has however decided that as I have no cancer markers I can drop my levothyroxine slightly, it's all a bit scary because as like you over all I feel better on the drugs and have no idea if all my joint issues are linked to this or something else.
Love your tag, I have two dogs an adorable cross and a big english pointer, thankfully I am fine to walk :-)
Hi Vicky, ohh that's a lower TSH than mine was to start with (tsh 0.05, t4 17). And I felt really rubbish with that! My consultant lowered my levothyroxine too and tsh has since crept up to 0.09, t4 15.2. I've had a further lowering in Dec and am going in for bloods next month but have since felt further improvements, so I know at last thankfully I'm heading in the right direction. I've found it really difficult to get my head around all this, not just having cancer of course but the ongoing meds and figures, as there's so many variables and literally every person has something different to say so it's hard to compare. It also seems to depend on the types of thyroid cancer as some they suppress (like yours, I'm guessing) and some they don't! I'm the type of person that loves to assemble facts, data, info, all neatly in a row and I'm learning that's all out the window with this!
If you feel you can fill in your profile with a bit of info, it might help those on the forum with more experience help you more if you need it.
Aww thank you yes my lovely dogs, Skye (in the picture) has just the biggest smile! They've helped keep me going. I've just had to take them out, even when I've felt at my worst and even just little walks have helped me no end. My mental health for one and of course the physical side. I bet especially with a pointer you agree, with collies there's no skipping that walk haha :)
Hi Daisy7, You are not on your own, lm suffering joint pain at the moment, they lowered my levo a couple of months ago as my TSH was 0.05 this has made a bit of a difference. my last bloods showed my TSH is too high now at 1.7 so my oncologist has upped it again, RAI has pushed me full pelt into menopause and l think it could also be related to that, l have also found the cold weather makes is 100 times worse, at the moment lm unable to work because of it (my job is on my feet and very physical) lm hoping hrt and the warmer weather is going to help. Dont know about you but the cancer was the easy bit to deal with its every thing else thats followed xx
Hi Murtle how are you doing? Sorry to read how bad your joint pain is still, I thought someone would be able to help Daisy7 more than I could.
I was interested to read how your oncologist thought your tsh level was too high at 1.7 Is that because they want to keep yours surpressed aswell then? I was only wondering the other day if you get to the level the consultants are aiming for, how do they keep it there, as it's such a slow response to the change in levothyroxine. I mean 6-8 weeks for each adjustment is hardly fine tuning haha!! (I've written this down to ask at my next consultant appointment in march).
Sounds like we are going through a similar thing, so hard to know what's menopause and what's levothyroxine :-0 that's seems like a huge change in TSH, I wonder what the sweet spot is? I am trying to keep a symptom diary to keep track of things and feeling optomistic that the lowering of meds might help
I have been on HRt for 5 years am still having a cycle and light periods fortnightly, I am 57 and should be through this now, not sure whats helping and what isnt, K9 crazy is right with the delay for these things to work it's hard to keep track Xxx
Hi k9 crazy, lm not too bad, hope you are doing ok. My oncologist wants my TSH to be 0.1 so yes he wants me supressed, lve been on levothyroxine since may and am currently having bloods every 8 weeks to hopefully one day get my levels right, l seem to be very sensitive and so if my chemist gives me a different brand it upsets things, so far l seem better on teva, its all very complicated isnt it xx
l so know how you feel, lm not sure if its the meds, menopause or RAI thats caused my problems as it all happened at the same time, l think somedays lm going mad, everything has the same symptoms lve been low on vit d and calcuim which adds to the pot, l feel like a can of worms has been opened since my treatment and my doctor just keeps finding more things wrong lol, lve gone from not taking any medication before all this to having to get mine collected as too much to carry lol, lm hoping hrt when l finally get it will sort a lot of it out. lm 55 and had no symptoms of menopause until l had RAI, and now lm in full swing, cant sleep, night sweats, joint pain, muscle cramps, itching all over my body and terrible mood swings and anxiety levels through the roof. l cant give you medical advise but sometimes is nice just to chat to someone who is going through the same as you xx
This forum is the best place to feel you are not the only one with some of the bizarre range of symptoms that the whole experience has thrown up, I was so totally underprepared for my first surgery, it could have all been straightforward but was not and I was so lost when I expected to feel ok after two weeks and was just so ill, it's been a lifesaver reaching out
Hope the HRT helps and things settle down for you soon
