Carbimazole side effects

[Lisa254]

Hi,

Wow I am now entering my 13 month on carbimazole, I can't believe it's over a year ago I went to my GP with hand tremors and achey muscles whilst running otherwise feeling fine luckily for me my gp diagnosed me hyper straightaway!

i just wanted to put an update on here (sorry for long post) for others going through this roller coaster journey as I know when I was really ill and reading through posts it's hard to follow someone's full journey.

I am now on 2.5 mg carbimazole and have been for the last 8 weeks. Due to my symptoms throughout the last 10 months I have gone through dozens of hospital appointment ct scan referrals, optometrist appts, a weeks heart monitor along with heart scans and a few ecgs . I am lucky my gp and endo listened to me moaning about how ill I was and all my tests have come back normal and my symptoms put down to side effects from carbimazole.

when I look at my list of symptoms over the last 10 months this evening I can't believe how long it was... going from palpitations to extreme dry eyes and crazy eye bogies (sorry) to constant nausea, general unwellness and severe exhaustion not to mention anxiety and panic that I had to talk myself into opening the front door to walk down the road oh and the dizziness anything would set it off sitting in a car and another car driving passed or walking along the road and those damn railings lining the pavement Oh and the back ground on the loose women set that slightly moved thank god itv moved buildings 😂 Ill stop here as there are still symptoms on the list but I'll run out of word space!

on my lowest dose yet 95% of my symptoms have now subsided whether this is side effects or I'm getting to the right thyroid levels for my body (forgetting this huge normal range) and I'm getting my life back , returning back to work, seeing my friends, running (only 1-2 miles as I feel like someone who has never excercised in my life before even though 11 months ago I was running half marathons) I even got out on the water in my kayak in the sunshine last week end. I still have a little way to getting back to 100% but compared to how I felt a month ago, 6 months ago etc what an improvement.

I will have my bloods done at the end of this month hopefully they will be in range and then my endo wants me to come off the carbimazole (my thyroid has been in normal range for the last year) I am wondering whether I should do it more gradually i.e. Go to 2.5 mg every other day so it's not a sudden shock to my system or is this a low dose that it wouldn't make any difference? Any thoughts would be greatly received

Thanks

[Khnz]

Hey Lisa, so sorry to hear of your carbimazole side effects. I took it for a short period last year before surgery and really did not enjoy it, and put on heaps of weight which doesn’t now want to come off. I think I was on 15ml daily before surgery and stopped it the day before surgery with no side effects that I was aware of. Good luck!

[Valarian]

I’ve been relatively side-effect free on Carbimazole from around one to two months in, so sorry to hear of your probs.

Good that your TFTs are coming down, and that your Carbimazole has also been reduced - fingers crossed !

People on the “block and replace” regime go cold turkey, from a high dose of carbi plus thyroid replacement down to nothing, so it must be ok. However, in your position, I might be suggesting the ‘every other day’ approach as well, even if only as a ‘comfort blanket’.

[Fruitandnutcase in reply to Valarian]

That was me. I went from my normal 40mcg carbimazole plus 100mcg levothyroxine on the Thursday I saw my endo to nothing at all on the Friday or since. Nothing happened although I was on block and replace. I think I’d just do what my endo suggests especially as you sound as if you’re happy with your endo.

[Lisa254 in reply to Fruitandnutcase]

Thanks yes I do get on with my endo he has always returned my calls even calling me at 9.30 in the eve 😳 .... he said he doesn't normally go any lower than 5mg every other day and said 2.5 mg wasn't much so I could stop but a response from elaine Moore she said to come of slowly going to 1.65 god knows how you can slit those tiny tablets. I think I'll go with what ever my endo says and keep everything crossed!

[Valarian in reply to Lisa254]

I reckon it’s a test. If you can split the pills accurately, there can’t be much wrong with your thyroid ! Who needs blood tests ?!

[Lisa254 in reply to Valarian]

😂😂 haha yes it so is!! and if you can pick with up the miniscual split with zero hand tremors your cured 😂

[Valarian in reply to Lisa254]

Really good to see you’re doing so well. It’s been interesting reading people’s stories over the last few days, there have been a couple of recently-diagnosed members obviously still in shock, and it’s good to remind ourselves just how bad we felt all those months ago - and to show “the newbies” how much better we feel now !

[Fruitandnutcase in reply to Lisa254]

Valerian and Lisa, your comments have out a smile on my face, I’ll for the rest of the day when I think of that.

I’d stick with what your endo says. Might be worth sending his details to the ThyroidUK office for their list of patient friendly endos - he sounds a treasure.