Carbimazole and finger joint pain......

[Homeboy2020]

Since having a TIA and hyperthyroidism identified during the investigation, i have noticed my fingers becoming progressively stiffer and more painful on taking carbimazole 20mg daily. Is this normal?

[PurpleNails Administrator]

Be sure to read through your patient leaflet provided by your pharmacist in full.

Something similar to this. medicines.org.uk/emc/produc...

There are some important warning signs for urgent side effects (such as sore throat & bruising). Pain in joints is a know side effect and expected to be temporary, a similar leaflet advises to “ drink plenty of water and ask your pharmacist to recommend a suitable painkiller. If it continues, let your doctor know”.

How long have you been taking carbimazole & has the cause of your hyperthyroidism been determined?

Also, If you have been taking carbimazole for some time it’s quite possible your thyroid levels have dropped too low, as being hypothyroid can also cause joint stiffness.

[Homeboy2020 in reply to PurpleNails]

Thanks for the info. Ok, i have been taking carbimazole since end Jan 2020 as overactive thyroid was diagnosed. Zero TSH and high T4 @ 54.5. T4 now 18.5 but still zero TSH. Had antibody test a month ago, score was 6.1 But covid has stopped all follow ups. I have noticed finger pain progressively increasing (no other effects as per the PIL).

Im also taking propranalol10mg daily (heart was racing for a while but GP said it was nowt to worry about) plus clopidogrel and atorvastatin for a TIA that happened along the way.

Oh, and to top it off, i have also recently been diagnosed with type 2 diabetes (currently trying to manage via diet).

My pkans for getting old disgracefully are on hold (for now!)

[Homeboy2020 in reply to Homeboy2020]

Forgot to mention, no obvious goitre and neck ultrasound ok. I suspect Graves but will see what the doc says when he resurfaces. Carbimazole dosage started at 30mg, dropping to 20 after 8 weeks

[PurpleNails Administrator in reply to Homeboy2020]

I have pretty much had a suppressed TSH since my diagnosis (toxic nodule). It can take a while to respond. Make sure you are dosed by T4 & T3 and not TSH,

There are several antibody associated with thyroid TRab and TSI are pertinent to Graves.

Up to now I have had 6 weekly blood testing which is standard monitoring. My last letter said as I am “More or less stable” I should wait until June!

Obtain your blood test results and make sure the ranges are included. Get into the habit of recording your symptoms, with what dose you are taking and your test results. Share on here for advice.

I still take propranolol (since Nov 2018). It’s usually temporarily prescribed to relieve symptoms until thyroid level are stable. Do not abruptly stop this medication. Reduce it very, very slowly. When I reduce it, it triggers migraines, plus my T3 disproportionately rises when I don’t take it.

I’ve also been diagnosed type 2 diabetic in February, with no sign previously.

The endocrinologist made out it was serious whereas my the GP said my level of Hba1c 51 was too mild a level to experience any symptoms. Trying a low carb diet and have lost some weight. I’m keen to know how I’m doing and was due a repeat HbA1c by now but with everything going on that’s on hold too!

What was your HbA1c ?

* HbA1c below 42 mmol/mol (6.0%): Non-diabetic

* HbA1c between 42 and 47 mmol/mol (6.0–6.4%): Impaired glucose regulation (IGR) or Prediabetes

* HbA1c of 48 mmol/mol (6.5%) or over: Type 2 diabetes

[Homeboy2020 in reply to PurpleNails]

Hi there. My HbA1c was 51 last time out with next test due in June. I have read that Carbimazole can cause inflated HbA1c but who knows. Im currently on low sugar/carb diet. To be fair, my endo said focus more on the diabetes side of things. Im trying to put weight back on as lost 2 stone in a year due to thyroid. Weight has stabilised but still need a few more pounds.

The big frustration is that the covid thing has stopped any further follow ups ....,

[PurpleNails Administrator in reply to Homeboy2020]

My endo also said focus on diabetes as more urgent concern than hyperthyroid, unfortunately no one had actually informed me at the the time and he clearly went into panic mode when he realised I didn’t know. I didn’t lose weight as my levels very never excessively high although my appetite was!

[Fruitandnutcase in reply to Homeboy2020]

If you are taking steroids that can push up your blood sugar. I’ve got inflammatory arthritis - my main symptom was stiff painful fingers - I was given a three month tapering course of propranolol which was then replaced with hydroxychloroquine.

The trouble with autoimmune conditions is that they tend to hunt in packs so once you have one you can get more.

Back then (about 2014/5) I was taking part in a pre-diabetes study and fortunately my annual check was just a month after starting steroids - turned out I was thrown off the study because I had acquired steroid induced T2 diabetes. The diabetes nurse at my surgery gave me three months to reverse it by diet and exercise - the exercise is very important I’d say.

I bought my own blood sugar meter and a very good book by a Dr David Cavan which I followed to the letter, charting everything I ate so that I knew exactly which foods affected my blood sugar and I ate my way out of it. I also lost two stones because I was no longer eating carbs which were being stored as fat. I know with bad eating I could easily slip back into T2 so it’s not a cure as such

diabetes.co.uk/in-depth/dav...

[Homeboy2020 in reply to Fruitandnutcase]

Interesting, which blood sugar meter did you go for? Would be nice to see real time data (I understand its not the same test as the 3 month average but i like data!)

[Fruitandnutcase in reply to Homeboy2020]

I bought the Accu-Chek Mobile. It wasn’t all that expensive but the replacement cartridges are. At one point it was actually cheaper to buy a new machine that came with a cartridge than a cartridge itself.

I chose it because it is very simple to use, it comes as a neat little unit complete with the thing to stab your finger and because the blood sample is contained it’s easy to get rid of the cartridge when it’s finished.

Also, if you keep your daily readings down your HbA1c will be where you want it to be - or that’s what I found.

Should add I do my own blood tests with Medichecks - if you can afford it it’s worth doing. They use different ranges that what my GP / hospital uses but it’s all relative - I was never one for surprises, I like to know what’s going on so I do they r thyroid with vitamins B12 and D, antibodies etc and sometimes their cholesterol and I do HbA1c before I have to have an official one done.

[Homeboy2020 in reply to Fruitandnutcase]

Many thanks for that. I will follow up as like you, i want to know whats going on in real time!

[Suegore in reply to Homeboy2020]

I was diagnosed with Graves’ disease earlier in the year . I was admitted to hospital with a racing heart beat and chest pains . I was diagnosed as being hyperthyroid . A few weeks later was told I had Graves when the antibody results came back . I’ve been on 20 mg of carbimazole since end of Dec . I have had problems with low white cell count which goes down and then slightly up again and is currently still just below range . I had a Hysterectomy in 2016 so have struggled with menopause symptoms but since being diagnosed with Graves I do not sleep at all , I am boiling hot all night and ache from head to toe especially in my hips and legs but have also had pain in my hands . I wondered also if it was the carbimazole that was making it worse ? I still feel absolutely awful all the time even though my results are all in range except the the TSH which is still low .

[Homeboy2020 in reply to Suegore]

My wife is in her 10th year of menopause and what you describe is same. Sounds like you got that plus Graves to contend with! Horrible getting older!

Its strange because the pain is only in my thumbs, middle and ring fingers. If i bend them too far you have to get me off the ceiling due to the pain!

[pennyannie in reply to Suegore]

Hey there Suegore

The TSH is generally low in Graves and it may not recover.

You can liken it to your foot stuck down on an accelerator pedal :

There is an alternative to Carbimazole - commonly referred to as PTU -

Propylthiouracil :

I'm with Graves post RAI ablation in 2005 - a treatment I deeply regret :

I was well on Carbimazole and my TSH is stuck down at 0.01. and is the most unreliable measure of anything. Graves should be dosed and monitored on T3 and T4 levels.

You might like to take a look at the Elaine Moore Graves Disease Foundation website, which along with this website has given me the confidence to self medicate.

Elaine has Graves and being a medical technician/researcher and finding no help with her health after RAI researched and then wrote a book to help others who might be in the same situation, and the rest is history.

P.S. Just looked back and see I've replied to you before !! Guess I'm a bit like a broken answer !! - No need to answer -

Do you have any blood test results to share - I'm truly sorry you are still so uncomfortable - maybe a different AT mediation may relieve some of the side effects you are experiencing.

[Fruitandnutcase in reply to Suegore]

I started on 20mcg carb but at my four week blood test my tsh hadn’t moved even though my T4 had. I got a message from my endo who I hadn’t seen telling me to double my dose. No more blood tests until I saw her two months later by which time my tsh was up to 7 and I was hypo - that feels just as horrible as being hyper - a different way but not nice at all. That’s the reason I don’t want to have RAI.

If I exerted myself my heart pretty much pounded until two months later when I was started on levo along with the carbimazole because I couldn’t take propranolol because I’m asthmatic.

Know what you mean about being hot - I woke every night and when I got up in the morning I felt like I had been run over by a bus which had then reversed over me and done it again for good measure. I spent the whole night throwing the duvet off to cool down then pulling it back again when I got cold. I used to have an Evian spray that I would spray myself with too - no wonder I was tired when I woke up.

[Homeboy2020 in reply to Fruitandnutcase]

I do have one question though, what is the level of thyroid antibodies that indicates graves? I had feedback (via phone as covid has stopped appointments) that it was 6.1. Dic would not say if this indicated Graves and deferred to the Endo (who, of course, is self isolating!)

[Homeboy2020 in reply to Homeboy2020]

Sorry, Doc not Dic 😳

[Fruitandnutcase in reply to Homeboy2020]

Haven’t got the tests I had done way back handy but the THyroid peroxidase level that gets done on Medichecks runs from 0- 34 and the other one they do is thyroglobulin is 0-115. I think my original diagnosis may have involved another test. It’s very frustrating when the doctors you need to see are unavailable.

I’m in the same position with something else - it’s not life threatening but for a good outcome early treatment is recommended but that’s not going to happen, it’s not even possible to get in the pipeline for when this (hopefully) all blows over.

It’s strange to realise that you are one of the people who are not being seen because of covid-19.

[Homeboy2020 in reply to Fruitandnutcase]

Yep, agree. I have some polyps that need sorting but all on hold. I looked at Medicheck and might give it a go as a one-off. Cheaper than i thought tbh. Plus is will hopefully be quicker than waiting for the End to resurface only to send me for more tests lolololol.

Many thanks for the info, much appreciated!

[Hkm2281 in reply to Homeboy2020]

Each place that test blood could possibly have a different normal range but my range for TRAb was 0 to 0.9. So if you have the same range then yes 6.1 would definitely indicate graves as it is well over normal range. Mine was actually 32.1 so very over.