I came off Carbimazole due to muscle and joint pains in my legs. I also developed bursitis in my hip. I’ve been now taking PTU for 4 weeks, for the first few days no pain but now have excruciating pain in my knee joints. Although my leg muscle pains are lessening. And my bursitis in my hip has returned. Has anyone else had joint paints on PTU?
PTU and joint pains : I came off Carbimazole due... - Thyroid UK
PTU and joint pains
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Poppythedog
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Hi. I take PTU. I’m sorry you are having problems with the drugs. I could not tolerate Carbimazole at all so I empathise with the u. I take PTU with no problems but I do remember my Endo saying joint pains are common. Probably doesn’t help u. Is it so bad u are considering surgery or RAI?
Thanks for your response. I think that may have to be an option. I’m seeing my Endocrinologist privately next Wednesday. Due to Covid all my NHS appointments were cancelled. I had been put on block and replace without any supervision and my GP just refused to engage with me in this.
I wonder if the PTU is the same as the carbimazole. I always remember being told the side effects would lessen over time but my argument to that was how do I get through now. So hard
It is awful. I can’t walk my dog, sleep more than a few hours a night and am taking painkillers constantly. I have recently found out that my Vit D level is low at 43 so am taking 4000iu of Vit D3 now. And decided 2 days ago to eat gluten free. I have breast cancer and had a mastectomy last May so it’s all very hard to cope with.
The sleep deprivation will make your pain worse. That’s a vicious cycle. Wow. You are dealing with serious issues. Very stressful. I’m sorry to hear that. Genuinely I am. If vitamin d is low what are your other vitamin levels like? Iron, folate, selenium, b12?
They are all mid range. And he only put me on PTU 50 mg once a day to see if I could tolerate it. It seems not! Roll on next week - I might get some answers.
Hmm. I hope you get answers next week. What level is your T4 and T3 roughly
My results mid March were TSH 0.17 : T4 20.6: T3: 6.3. TSH this week 1.09. Awaiting test kit for the others.
Just testing TSH is completely inadequate, especially with Graves as TSH is frequently slow to respond
Essential to test also test folate, ferritin and B12 regularly too
I agree with you but the NHS doesn’t. Did have full screen in September and February.
So were vitamins at good levels in Feb?
Everything good in the thyroid screening but a low Vit D showed up on my specialist allergy tests last week. Surprising as I have a calcium / D3 for my bones. So some further supplementing and talking to endocrinologist as to whether that might be contributing to the pains. I would talk to the GP but I won’t get very far!
Chemically PTU is a totally different compound from carbimazole. They are not even close in their chemical make up
Yes I’m aware of that. I’m a health care professional. Thank you for your responses.
Sorry.
Not sure why you are sorry. And thank you for your help. Everyone has been helpful. And now I know a bit more. X-rays and a rheumatologist might be next on the list. X
I am sorry because of the tone. I thought you were angry at me. Messaging is hard because tone is determined by the receiver and for me I thought you were angry at me. I didn’t know carbimazole and PTU were totally different chemically. It was Elaine Moore’s page that helped me with that knowledge. She is very good. Takes about 10 days to get a reply to a post but she is very knowledgeable. I wish you luck. To answer your post. I don’t have joint issues on the PTU. I’m on 200mg a day. Kindest regards always NIKEGIRL
I knew because having been a medic I check it every thing out . I’m sorry if I sounded angry. I certainly wasn’t. But might have been abrupt. I didn’t anticipate these pains on PTU. And a nights sleep would be wonderful. I’ll check Elaine Moore out. Thank you. Xx
I get 4 hours sleep a night due to a mild brain injury so I appreciate where u r at with sleep. Everyone on this site is kind and knowledgeable. Good luck. Do another post when u know more. Sincerely kindest regards always NIKEGIRL
Xx
Hello Poppythedog and welcome to the forum :
Do you have any current blood test results to share with form members ?
Can you give us your original TSH, T3 and T4 blood test results at diagnosis of Graves Disease and the positive and over range antibodies result ?
It is advised to keep your strength strong and solid and you do need the maintain your ferritin, folate, B12 and vitamin D at optimal and higher in the ranges, than some medics may think necessary.
I have Graves disease and given RAI in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism and have been self medicating these past few years as the NHS generally only prescribe Levothyroxine though there are other options available but not currently through a NHS prescription.
Graves is an auto immune disease and there could be a genetic predisposition and it can be triggered by stress and anxiety and looking back at reading on, I think we can tick that box.
I think both AT medications have their fair share of side effects for some people and do not know if your previous, or possibly on going treatment regime may have compounded your current side effects.
If you want to read up on Graves Disease I think the most well rounded is the Elaine Moore Graves Disease Foundation website and where I started off 12 years after my RAI treatment.
I had no answers to my symptoms, in 2017/18 and I thought maybe " that Graves " had come back, only to read, it's an auto immune disease, and as such, it's for life, and the symptoms I was dealing with were detailed as potential side effects of Radioactive Iodine.
Thank you Penny. I put my results, such as I have, above. At diagnosis lat October they were TSH: 0.03: T4 24.8. Positive Graves antibodies. 4.5. Not high compared with others but enough to make me ill! In addition I have had two 999 admissions in December for anaphylaxis. Turns out I’m allergic to haricot beans (baked beans) and not to eat any beans including green types at all. So basically I’m an autoimmune mess. And my RAI result that I requested showed no antibodies. My sister also a medic, had to retire as a consultant due to RA. Hopefully get a little more understanding from the consultant endocrinologist next week.
Thanks for the reply - do you have the ranges on the above TSH and T4 results
Was there a T3 result ?
Which Graves antibody are you referring to and again please, do you have the range ?
I’m not sure why that is all relevant here? I’ve had issues with doctors treating blood results and not seeing the patient and their symptoms. I thought this was a general forum for support and information.
Well, I think it is, and I was just asking for the ranges as these can vary depending on which machines the laboratory use.
There are also 2 antibodies unique to Graves Disease - one stimulating and one blocking and it's of value to know the full details rather than make assumptions.
I'm sorry if I've upset you.
You didn’t upset me Penny. I just wanted to know why when my question was had other people had joint pain on PTU?
All it says is TSH receptor antibody level (XaEO4) 4.5u/L (0- 3.3). And then says - associated with Graves Disease. Both the consultants I’ve seen have seen these results and confirm that I have Graves.
Thank you :
Hi Penny. I set out the ranges in my response to tattybogle below.
Yes I saw, thank you ;
We ask so many questions because we sometimes get questions from people treated with carbmazole /PTU for Graves when in fact what they had is early stage autoimmune hypothyroidism , which often starts with a false hyper phase, which has T4/3 levels that are high but not as high as graves, and unless they had over range TRab antibodies which confirm Graves as their cause it is easy to give the wrong advice. We need the lab reference ranges that came with the blood results because there are so many different ones, and so for example fT4 24.8 on a range of [12-22] is not very high at all , but if it was a range of [7.9-14] it indicates a significantly higher fT4 level.
Hope this makes sense.
So my NHS lab uses the following rangesTSH 0.35 - 4.94 Mine was 0.03 following diagnosis
T4 9-19 Mine was 24.8 following diagnosis.
But then following 5 weeks unsupervised block and replace - my TSH 0.5 went from to 4.67 and my T4 from 11.4 to 12.9. At that stage I was very unwell and my medication was halved to 10mgs of Carbimazole and 25mgs of Levothyroxine.
In late Feb (TSH1.24) took myself off Levothyroxine saw a GP locum and referred myself to my current Endo. who put me on PTU 50 mgs once a day to check my tolerance levels. Which is where I am now.
Please note I have only been able to see an Endo privately in Zoom and my GP has not seen me since he diagnosed me with a virus and I insisted on full blood tests. The joys of being ill in a pandemic. At least my cancer team see me in ‘the flesh’.
PurpleNailsAdministrator
Arthritis type pain can be an allergic type reaction to PTU. I have read this on a patient leaflet, your pharmacist would have included a manufacturers leaflet when medications dispensed.
Have you tried antihistamine with pain relief?
It’s also reported if it’s a reaction it has good chance of settling down over time. If the source of your pain is the Graves itself once this is controlled it will ease too.
Yes I read that but my Endocrinologist said it was very rare on PTU. So I was interested if it was more common than I was given to believe.
PurpleNails - I like check the possibility of an allergic reaction out with him next week. It also says that it is a rare side effect without an allergic component.
Since PTU is not very commonly prescribed , not many people who've tried it will be reading this post at the moment. If you type PTU into the 'Search HealthUnlocked' box and set the answers to 'all communities' , you will be able to see old posts from this and other groups ( there is also a graves group but it's not as active as this one)
Hopefully this will give you a better chance of finding others with experience /or not of joint pain /PTU
healthunlocked.com/search/p... not sure if this link will work or if you'll have to do it yourself 
Thank you. I had a look but noted they were from sometime back and didn’t cover joint pain. I’m pretty sure it is bursitis which is a fairly uncommon symptom in hyperthyroidism but was trying to establish whether it was drug induced. This is such a tangled web. Have just been to my hairdresser (male aged 35) - he has Graves and his girlfriend has Hashimotos! One of my male friends said it would have been better if I had Hashimotos as i could wear a kimono and live in Japan! 🤣Graves is not so exotic.
Thanks for the additional info , it all helps people avoid going off in the wrong direction with replies. And as you've discovered, the 'after-care' for thyroid disease is naff, (it was naff even before the pandemic !) so people end up here with all kind of misleading information about what condition they have.
Just to chuck something else into the mix for you to think about ,, several of us on here with hypothyroidism get problems with bursitis appearing when we are undermedicated on Levo.. i have one on my knee which came back last year when dose was reduced too far.
So it's theoretically possible ( if your dose of PTU is too much ?) that your bursitis is not a side effect of PTU , but rather a sign that the PTU has reduced your fT4/3 too much, ......although this weeks TSH of 1.09 seems to make that unlikely as 1 ish ought to indicate an OK level of fT4 /3, but it will be interesting to see what your actual fT4/3 results are,
because in Graves you have to be cautious about relying on TSH to tell you anything because it can be slow to come up if it's been low for a while.
You initial TSH at diagnosis was not as low as some, and also your fT4 was not as high as some., not that that makes the symptoms any easier to handle.
It seems slightly unusual for NHS to go straight for Block and Replace, rather than just carbimazole.
Sorry i'm not being much actual help yet, but hopefully others with experience of graves will.
In the meantime , i don't know if these will be of any interest, but the canadian site they are from is a trusted source, and full of useful explanation re. the subject of autoimmune thyroid disease.
healthunlocked.com/api/redi...
thyroidpatients.ca/2020/04/...
Mmm block and replace! 🤔🤔 My new Endo said - not usually used now and if it is needs close supervision. Prescribed at a consultation lasting 15 minutes for £225 . It was a nightmare!
I did take Carbimazole 40 mgs for 4 weeks and then 10 mgs for 3 weeks before I saw Dr block and replace. I saw him because I was told that I had to be seen by a consultant and had been referred - no referral was made.
Today’s information has been helpful. Thanks to you all.
In case it's useful in the future .. i wonder if you've seen this post we were discussing the other day. Study on Long Term Antithyroid treament and Graves antibodies healthunlocked.com/thyroidu... seems to me that the level of TRab is an important factor in decisions about the right treatment going forward.
Hope you find a solution to the joint pains/bursitis and an Endo you have confidence in soon ... i know how horrible it is when one day of pain just continues into the next without any decent sleep in between .
Hypothyroidism's isn't very exotic either though, it's just not as dramatic, but in my experience if Levo doesn't fully fix you, you're just ignored, for ever. So i hope your TRab go away and give you a chance to keep your own thyroid.
This IS useful. I have a friend now in her 80s who was diagnosed with Graves at 70. She , by her own description, appears to have been very ill and had RAI almost immediately. She took Levothyroxine after 14 months and says -‘it’s so simple, just little tablet a day and blood tests if I don’t feel good’. I’m aware that it may not be wonderful but I’m not going to rule out. My age is a factor. I assume, by your name, that you are north of the border.
No , but the name was given to me by a Scot .... i can only assume i was a Funny Looking Kid... (there's not many photo's, and tales of 'hair like a coconut' ) and anyway , it's OK ,turns out i like living in fields
Problem with Hypothyroidism treatment is, it's a bit like russian roulette.. it works just fine for the majority, but at a conservative estimate maybe 15% have real problems on it with quality of life going right down the pan.... i came here a year ago and the membership was 107,000... it's now 117,121.... and nobody came here because they're doing well.
Anyway . Best wishes and Enjoy the Potting-up. Off to play chauffer to No1 daughter.
x
Thank you. I’m desperate to get this sorted. Not sure how much life I have left - in my 70S with cancer - but I want some quality! I am fairly confident about the Endocrinologist I’m seeing now. He listens, concentrates on me and my symptoms not my blood tests. I found him via private messaging some people on this site.
Interesting question from him was ‘what is your most dominant health concern. The cancer or the thyroid disease’? I told him the thyroid. This is dominating my life 24/7. And doesn’t have a clear pathway of treatment.
Lovely day - so outside and a bit of potting in in the greenhouse. Thanks.
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