Hello, I’m a 33 year old woman, I was diagnosed with an overactive thyroid around 2months ago, was put on 15mg carbimazole a day. Started with a painful mouth ulcer so stopped medication & waited to see my consultant for advice as I didn’t know how bad the mouth ulcer had to be, he advised me to go back on to the medication & if I had another mouth ulcer it could be the medication, did so & got three mouth ulcers, missed two days worth of medication and then woke up with a really sore & bruised hand, which progressively got worse to to point where I couldn’t move my hand, several trips to the doctors I was given steroids and codeine to deal with pain and refereed to a rheumatologist. During the last 6 days the pain has moved around my joints (hands, feet, knees, hips, groin) and has been so painful I haven’t been able to carry out usual tasks or work, with night time being the worst. I contacted my consultants secutary to express my concern that it was the Carbimazole for her to reply and say he said it wasn’t thyroid or medication related. I have done my own research and a rare side effect of Carbimazole Is something called anyithyroid arthritis which i believe this is as it’s come on so suddenly & I already had my doubts about my body reacting with the medication because of ulcers. My endocrinologist is on holiday and I’m awaiting an appointment with the rheumatologist but getting very frustrated as my GP can only treat the symptoms and it’s specialists that I need to see. Writing this post in the hope someone has had similar experience. I stopped taking Carbimazole 6 days ago and still dealing with the anti arthritis. Thanks in advance.
Carbimazole & Antithyroid arthritis : Hello, I’m... - Thyroid UK
Carbimazole & Antithyroid arthritis
Welcome to thyroid forum.
I’m sorry to read all this, your care doesn’t sound very good at all.
What were your symptoms before diagnosis?
Some people don’t do very well on carbimazole - there is 1 alternative called Propylthiouracil (PTU).
Do you know if you had a blood test testing “Full Blood Count” (FBC) test includes white blood cells - this should have been checked before your resumed carbimazole?
Carbimazole can rarely cause a drop in white blood cells, your GPs can arrange a FBC. Mouth ulcers, unusual bruising is a concern.
The patient information leaflet (PIL) will have explanation about this & you can also obtain an alert card.
btf-thyroid.org/shop/antith...
Your joint pain - as you say could be antithyroid arthritis.
Also obtain a printout of your results with ranges & post on here so we can explain further. (What are you TSH, FT4 & FT3 levels?)
You should have a repeat blood test 6 weeks after starting carbimazole. Usually carbimazole is reduced after an initial higher starting dose.
15mg is not a high dose, so your FT4 & FT3 levels may not be worryingly high at the start. Some start on 50mg.
I started on 20mg in 2 months the dose was reduced to 10mg & I didn’t have very high levels.
TSI & TRab antibodies should be tested to see if you have Graves (specialists usually arrange this).
Graves is most common cause of continuous hyper. Sometimes hyper levels can be transient so it’s very import to check. (Antithyroid should be used of hyper is temporary)
Hello, thanks for responding.
My only symptoms were mouth ulcers, after first mouth ulcer I stopped taking the Carbimazole and arranged for a blood test to check my white blood cells but my doctors messed me around and blood test was a few days later and then the blood results got lost somewhere, when I told my consultant this he said the blood test would have been useless anyway because my white blood cells would have had chance to build up again and my bloods won’t have shown a true indication. He then told me to go back on the Carbimazole and that’s when I got a further 3 ulcers and then the arthritic pain started. I don’t know any levels, I just know that they aren’t too bad, I’ve had symptom's of an overactive thyroid for 10 years now (anxiety, irritability, can’t put weight on) and have had a few blood tests for my thyroid and they came back as normal, this is the first time it’s shown up on a blood test. I had joined a gym in November and my heart rate was regularly getting up to 200 so that’s why I requested they take my bloods and check thyroid again.
I’ve saw the consultant a few weeks ago and had first bloods taken to check for Graves, waiting on a 2nd blood test and then see him again on 25th May to hear results of that.
With autoimmune Graves levels often appear suddenly & severely levels are typically very high. If levels “aren’t too bad” you are possibly having transient fluctuations.
Autoimmune thyroiditis (Hashimoto’s) can cause this, the immune system attacks thyroid the damaged cells release hormone but gradually over time the damage in lower function & under active thyroid. Low / fluctuating levels can also cause anxiety & irritability.
Weight loss is a common hyper sign but we are all individual. 10% gained weight when hyper or lose weight when hypo.
Doctors tend to focus on TSH (thyroid stimulating hormone) which is a pituitary hormone which signal thyroid to increase / decrease production on new hormone. If the TSH is low doctors assume FT4 & FT3 are too high but that’s not always the case.
Sometimes doctors want the TSH to rise and even if FT4 & FT3 are in range doctors lower thyroid levels to make TSH rise.
You are legally entitled to all your blood test results. Many can set up online access but if a practice is unwilling to set this up you can obtain a printout of results via reception.
I can’t say if white cell recover that quickly. It’s unfortunate you were not tested quickly & results went missing. I might have thought a further series FBC might be appropriate p, especially as the mouth ulcers came back.
The joint pain is a very common symptom of thyroid issues & anti thyroid medication - the receptionist message is incorrect.
I do not think they have the evidence to claim that it is not thyroid or medication related.
I encourage you to put in a Yellow Card report:
🟨 Making Yellow Card Reports 🟨
healthunlocked.com/thyroidu...
No UK Carbimazole products have his identified as a possible adverse effect.
This searches all UK products documents and finds propylthiouracil products but not carbimazole. And I'd put my money on that being wrong.
products.mhra.gov.uk/search...
I'm sure you will have seen this about colchicine?
Most PIL and NHS information on carbimazole mention joint pain as a common but less serious side affect.
Suggest you get FULL thyroid and importantly vitamin levels tested
Low vitamin levels can cause issues and very common with autoimmune diseases
Have you had Graves’ disease confirmed by testing TSI or Trab antibodies yet
Recommended that all thyroid blood tests early morning, ideally just before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
Graves Disease antibodies test
Hello Abimilne and welcome to the forum :
When I was diagnosed Graves my only ' new ' symptom was insomnia and my WBC was 4 and at the bottom of the range but I was still treated with Carbimazole and told to go straight to A & E / hospital if mouth ulcers occurred as there was and is an alternative AT drug - PTU - which would be prescribed, as previously detailed.
You say you have had overactive episodes over these past 10 years - what was prescribed previously ?
Graves tends to be a continuous period of hyperactivity and said to be life threatening if not medicated with an Anti Thyroid drug:
Hashimoto's - another thyroid auto immune disease tends to present in the same way but transient and the T3 and T4 fall back down into range themselves and is not medicated ?
The only way to tell these 2 AI diseases apart is through which antibodies were found positive and over range which is generally run from the very first blood test run :
Do you have a copy of the blood test readings from the initial blood test ?
You might like to read around Graves and AI disease on the Elaine Moore website -
hello. Thank you for replying. I haven’t had an overactive thyroid for 10 years but the symptoms for that time, it’s just never shown on a blood test until around 2 months ago, do have never had treatment. I don’t have access to the blood results but should maybe contact my doctors to get them.
We are now all legally entitled to have copies of our blood test results and ranges and see our historical medical records.
You register with your primary care provider for online access to all your medical records, just ask at reception, you do not need a doctor's permission.
When you have had these episodes before what symptoms were you dealing with and did you visit the doctor and were any blood tests run, as if you did, find these results and ranges and current readings and forum members will be able to explain what it all means and help identify what is going on.
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