Reducing carbimazole

[Fokolatechu]

Hi, i’ve been diagnosed with an overactive thyroid and treated with carbimazole 20mg for the last 2 months. My levels have returned to within normal range so GP has reduced my dose to 10mg but bow I feel really ill again. I’m exhausted in particular my muscle ache is returning although not as severe as previously but I am still on 40,000 units of vitamin D, i’m constipated, having dizzy spells, bad nausea with regular headaches and feeling “heady in general”. I just wanted to know whether this is a common occurance? I am being reviewed again in 2 weeks so i’m interested to know what my levels are going to be!

[Valarian]

Hi

What were the results and ranges of your last few tests, including the initial one ?

Do you know what is causing your thyroid to be hyperactive ? (You would probably need thyroid antibody tests for this )

Interesting that your dose was reduced by your GP. Are you not under an endo ? In the U.K. at least, hyperactive thyroid normally gets specialist care.

[Fokolatechu in reply to Valarian]

Hi, thanks for your reply. I don’t know what my ranges were. The doctor from my last visit is only just referring me to endo but not urgently and my antibody results have been normal which has confused even the GP.

[Valarian in reply to Fokolatechu]

Assuming you are in the U.K., you are legally entitled to a copy of test results, and should be given these free of charge. They need to include the name of the test, the result, and the reference range used, which varies from lab to lab. Just ask your GP’s receptionist, and also ask whether you can download them for yourself online.

I would expect your GP to have tested TSH and FT4 at the very least. Ideally, given they began treatment with a moderate dose of Carbimazole, they should also have tested FT3. In some places, FT3 is tested automatically if FT4 is above range; in others, it can only be ordered by an endo.

The relevant antibody tests are TPO, which when very elevated is indicative of a hypo disorder, Hashimoto ‘s Disease, but also present to a lesser extent in 65% of Graves’ cases. The tests for Graves’ are either TSI or TRAb. If either of these have been tested and are not positive, it’s unlikely your overactive thyroid has been caused by Graves’. However, some people here have been told that only an endo can order these tests, and in practice, most people don’t get the antibody tests until their first endo appointment. If ONLY TPO has been tested and not been elevated, it’s unlikely you have Hashimoto’s disease , but Graves’ is still a possibility.

There are lots of possible permutations here, and we really need to see your results and ranges to help you. However, as Fruitandnutcase and Hattersteapar have said, to reduce your Carbimazole so soon if you’ve got Graves’ seems very quick, especially if your TSH is still suppressed and your FT3 hasn’t been tested. Graves’ is an autoimmune condition which can’t be cured, so the aim is to achieve remission. It’s generally accepted that the best chance of doing this is to get thyroid levels within range, and keep them there , with treatment lasting from twelve to eighteen months.

If your thyroid levels are/have been elevated, and it isn’t Graves’ you need to know what has caused the problem, but will probably need to wait for the endo. You could be waiting up to 4 months for an endo appointment, but in the meantime, continue with blood tests every four to six weeks. They might push them to every eight weeks, but if you feel any worse, ask for the blood test to be brought forward. (Hopefully you’ve had warnings about heading straight for the GP or A&E if you are feeling unwell with a sore throat while you are on Carbimazole ? Unlikely to happen, but potentially serious if it does).

Nausea can be a side-effect of Carbimazole, and exhaustion and muscle ache/weakness/spasms can be side-effects of being hyper. What other symptoms were you experiencing before you started the Carbimazole ?

I can’t help you with the vit D side-effects, but there are people on the forum who could - this question probably comes up more frequently with hypo patients, so maybe repost that part of your question with ‘Vit D Side Effects’ in the title.

btf-thyroid.org/information...

btf-thyroid.org/information...

thyroiduk.org.uk/tuk/about_...

[Fruitandnutcase]

Hi, as Valarian says if you have Graves and you are in the UK you ought to be seen at a hospital by an endocrinologist - your GP ought to refer you. My GP sent off bloods on a Wednesday and by the Friday she had the results and I started on 20mcg carbimazole but that was only a stopgap until I saw my endo three months later and started treatment - I had a blood test after four weeks and got a letter from the endo I was waiting to see to tell me to double up my carbimazole to 40mcg which I did for the next two months. Took three months to get ta see my endo.

I was told that my hospital treated the fast way - block and replace - and that would take a year so your two months sounds a bit fast.

Post all of your blood test results along with their lab ranges ( figures in brackets beside them) and see what people think. Ask your doctor to check your vitamin D and B12, ferritin and folate. Yes u want them all well up in their ranges.

You definitely need to be referred to an endocrinologist for Graves though.

[Fokolatechu in reply to Fruitandnutcase]

Hi thank you for your reply. I’m only just being referred to endo. I will get a copy of my results when I see the GP next and post them.

[hattersteapar]

Gosh that seems a really quick reduction. I was given carbimazol to start along with beta blockers by my GP and if I remember correctly it was 40mg I had 4 weekly blood tests and I was on 40mg for aprox 3 months before it was reduced, my GP would speak the the endo's at the hospital to get advice on my blood results and act accordingly

Then when my appointment finally came through I was eventually put on block and replace which I have been on since it's been a year since my confirmed diagnosis of Graves. Good luck in your journey.

[Fokolatechu]

Hi thanks so much for replying. It really helps to get some feedback on other people’s experiences to really know what treatment you should be receiving.

[dfran]

High Vitamin D levels can cause all your symptoms too. My daughter had them, she was prescribed Vitamin D because she had low levels caused by a drug called Tretinoin for acne. The Vitamin D had a devastating affect and it took two weeks to find this.

[HLAB35]

The fast reduction sounds like a Hashi's flare (antibody attack) as do your symptoms E.g constipation. Graves is a lot more persistant as Tsh is much more supressed for longer. Must check those antibodies to confirm. No need for carbimazole at all if it's Hashi's, so they really should have checked.

[Cat4health]

How long have you been on the reduced dose? Apparently levels can temporarily flare during the first 6 weeks of titrating down but it will settle if you give it time

[Fokolatechu in reply to Cat4health]

Hi, this is only my second week of reducing but I have felt so exhausted again all week, dizzy and really nauseous.

[Cat4health in reply to Fokolatechu]

It would be important to know your results but perhaps wait n watch, 2 months is not actually too fast to reduce as the excess thyroid hormone gets used up by 3 weeks but maybe discus with your gp if you're feeling particularly unwell