carbimazole

[Emerald1953]

Good evening

I was prescribed 2.1/2mg carbimazole June this year, thyroid function now stable, does anyone know if I will have to take this medication for life?

[PurpleNails Administrator]

depends on cause of hyper. If autoimmune cause it can natural resolve. Usually doctors say try carbimazole for up to 18 months & then stop treatment to see if you remain in range.

If you become hyper again often recommend surgery to remove thyroid or radioactive iodine (RAI) which destroys thyroid by pill/drink - without an operation.

If the cause is hyper (toxic) nodules then doctors recommend early definitive treatment.

I have toxic nodules & was recommended RAI but remained on carbimazole long term. Over 5 years.

[nooneimportant]

hi there I’m autoimmune graves and take Carbimazole. Not had great experiences with it however others have found it a lifesaver. I started my treatment in about June 23 I think and I’m still taking it about 2.5mg every other day - I don’t think I’m in remission yet personally and not had bloods done for a while now but apparently remission is possible for some following treatment …unfortunately I don’t think I’ll be one of them 😞 but there’s definitely a chance you won’t have to take it for life 🙂 my step daughters graves went into remission on its own without treatment at all 🥰

[pennyannie]

Hey there again :

As your diagnosis is thyroid nodules - you may need to stay on the AT drug long term :

Did you stop the multi vitamin that contains iodine - ?

Multi vitamins are not recommended as we need A grade supplements with as few bulking agents as possible - do you have any readings for your core strength vitamins and minerals - ferritin, folate, B12 and vitamin D as we can advise where these need to sit - within the ranges in order to optimise and support your health and well being-

Do you now take the Carbimazole well away from any other medications - ?

there is an alternative AT drug - Propylthiouracil - PTU - which may suit you better ?

Are you still taking this small dose of 2+1/2 mcg Carbimazole just twice a week ?

[APAscot in reply to pennyannie]

sorry to jump in here but I didn’t know about a gap between carbimazole and other medications. How long should it be? I’ve been taking carbimazole since 2016 due to toxic multi nodules

[pennyannie in reply to APAscot]

If you read the back posts of the O/P ( just press on the Icon alongside their post )

it reads as though initially there were some issues taking this drug and believe it was being taken alongside a statin -

and it is generally suggested that any new drug is taken well away from any others - so to allow maximum absorption and benefit :

I would suggest a couple hours away from any other medications and ideally on an empty stomach and not just after having eaten.

[APAscot in reply to pennyannie]

Thank you pennyannie

[Littlefoot1thyroiduk]

Hi Emerald, I have Graves disease ( hyperthyroid) a with a small inflamed goitre (which was not analysed any further - I had investigations for throat cancer which proved to be silent acid reflux and is now healed but I have to maintain a low acid and very healthy diet- cancer ruled out and my own scan showed no nodules ) and was prescribed with carbimozole last year.

I was on it for a year + 3mth with regular reviews through monthly blood tests (I asked my GP to do which they did willingly) - for Free T3 and Free T4 and the TSH - I was able to see my results on the NHS portal - so I could see how my hormone levels were improving to within range. my general health, vitality improved - I held down a new and very demanding job - impossible before the meds.

But throughout I have made big changes in my general health care - quality diet / right amount of sleep and exercise / avoid stress - sadly not avoidable due to my family health challenges - but I have changed my attitude to stress which is helping and have sought extra help with my responsibilities and found my own special time out ( I just take it ... and stop saying yes to helping everyone else) .

I was then put on a 3 mth trial of no meds - I was told with the progress I had made I had a 40% chance of being well and never having a relapse ( because those are the general stats - not specific to me) - that was in July. So far all seems ok ... new check in February.

Told that if any symptoms returned to go straight back to the consultant .

I am sanguine about the chances of relapse ... the stats aren't brilliant .. but I'll take all the good times I can get .

My view is that you must get to the root cause of the problem and get the right treatment as soon as you can .. .. I found my first consultant somewhat cavalier and disinterested with no empathy. I made a point of registering my frustration in writing - I got a better consultant next time ! Everyone is jumping to help me now.

I felt so urghh a year and a bit ago and just focused on getting better - so didn't work for some months ( not always an option - I was lucky even though self emplyed).

Hope that helps.

Good luck

[Littlefoot1thyroiduk]

ps .. I did as pennyannie - I woke a bit earlier - took the Carbimozole and went back to sleep - I had to then later take another med for the acid reflux before breakfast ! . 🤣