Carbimazole and joint pain

[Grahamcu]

I’ve been on carbimazole for 12 months. Have been on low doze for 2 months (5mg now). I suffer from joint pain (in hands mainly) and also ankles. Also get bad pins and needles at night. Could carbimazole be the cause?? Thanks

[PurpleNails Administrator]

Hello & welcome

Carbimazole can cause joint pain, it’s listed as possible side affect. You should have had a patient information leaflet when the medicine is dispensed, all common symptoms are listed on there. Usually symptoms occur around the time of commencing the medication and they ease with time. So it’s more unusual to develop later on.

Are the pins and needles also in hands and ankles, or elsewhere.

Was the cause of your hyperthyroid determined?

What are your currently thyroid levels (TSH, FT3 & FT4) being too high or to low can cause joint pain symptoms.

Have you had ferritin, folate, B12 and Vitamin D tested. These can often be low when you have been hyper.

[Grahamcu in reply to PurpleNails]

I am seeing my GP next week so will askif she can test my ferritin, folate, B12 and Vitamin D. Thank you for your reply

[SlowDragon Administrator]

Essential to regularly retest vitamin D, folate, ferritin and B12 too

Low vitamin levels are EXTREMELY common with Graves’ disease

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[Grahamcu in reply to SlowDragon]

Great advice. Thank you

[pennyannie]

Hello Grahamou and welcome to the forum ;

What is your diagnosis - is it Graves Disease ?

Do you have copies of your blood test results and ranges from diagnosis.

The Carbimazole initially blocked your thyroid hormone production and as your levels of T3 and T4 have reduced back down the AT drug has been titrated down accordingly, so to try and adjust your T3 and T4 levels, slowly bringing you back down into the T3 and T4 ranges smoothly.

You could liken this last year to the endo being your pilot, and having put you in a holding pattern. S/he has taken control of your gear stick, and metabolism, which were stuck in overdrive. Slowly your levels have been manually adjusted by the anti thyroid drug, Carbimazole, and you are now being guided back down to land smoothly, back down onto the runway with T3 and T4 thyroid hormone levels being in range.

The most important number is the T3 and too high a level of T3 and you have hyperactivity and debilitating symptoms and too low a level of T3 and you can experience symptoms of hypothyroid which are equally dibilitating.

When metabolism isn't " just right " - too fast or too slow, it's harder for your body to extract the vital nutrients out of your food - so for a good part of this whole year your vitamins and minerals may have started to drop in the ranges, and its advisable to maintain, ferritin, folate, B12 and vitamin D at optimal, good levels in the ranges.

These might be symptoms low vitamins and minerals, they might be symptos of too low a T3 and to receive a further, more detailed explanation we do need to see some actual blood test results and ranges.

If you go to the Thyroid uk website, just scroll up and you'll see their logo and membership numbers now topping over 115 thousand people, so you are in good company, and to whom, so many of us, owe a big Thank You.

Thyroid uk is the charity who support this amazing forum and there are sections there on the symptoms and causes of hyperthyroidism along with everything else " thyroid " you may want to know about.

I 'm with Graves Disease and had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism. I became really unwell in around 2014 and finding no resolve in the mainstream NHS found myself on here looking for answers, and am now so much better, I 'm able to come back on to lend support and share my understanding of all things thyroid.

[Grahamcu in reply to pennyannie]

Thank you so much for taking the time to reply.

[pennyannie in reply to Grahamcu]

Just to add, if your symptoms started when you started the Carbimzole obviously then that looks to be a reaction to the AT medication and there is an alternative AT drug referred to as PTU - Propythiouracil :

I read you question to be one of new symptoms after being on the Carbimazole over a year.

[headtheball]

Hi Grahamcu,

Yes, I had a terrible time with joint pain when I started carbimazole. My thumbs and fingers were extremely painful and I couldn't use them. I had to put stints on them at night to get sleep. I asked my dr if perhaps it was my thyroid causing this and he said no. I also asked if carbimzole was causing it and he said highly unlikely but he did change my meds. It took months for the pain to go and my thumbs do not have their full functionality back after a year but I am much better.

The pain was so bad and the consultant said that it was not connected to my thyroid issue and that I should have them x-rayed. This I did but because of covid I was not called back for the results until now. So I have an appointment for the results in April. But I am guessing that it will be nothing because as far as I am concerned it definitely relates to the tablets or thyroid.

Hope this helps and you get some relief.

[Grahamcu in reply to headtheball]

Thank you for your reply. It’s very interesting we’re both experiencing similar pain. My endocrinologist also says it’s not related. I’m goi g to see a hand specialist I two weeks. Will be interesting to see what he says. Thanks again

[Bellazzurra in reply to Grahamcu]

I have to disagree with endocrinologists when they say that joint pain isn’t linked to Graves’ Disease. I also experienced joint pain (fingers and knees especially) before I started taking Carbimazole and for months after I started taking Carbimazole, the joint pain persisted. The joint pain only subsided when I started taking targeted supplements prescribed by my functional practitioner.

[helvella Administrator Thyroid UK in reply to headtheball]

The Patient Information Leaflet for at least one carbimazole tablet includes this:

Other side effects include:If you get any of the following side effects, they normally go away while you keep taking your medicine.

• Feeling sick (nausea)

• Headache or feeling dizzy

• Skin rashes

• Itching

• Stomach upset

• Painful joints

• Hair thinning

• Changes to your taste.

medicines.org.uk/emc/files/...

Despite joint pain being there, I suggest you consider putting in a Yellow Card report:

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

Pins and needles is frequently linked to low B12

Pins and needles is hands carpal tunnel....common when hypothyroid...So Ft4 and Ft3 may be too low