Do symptoms return when coming off carbimazole

[indiesnow]

Hi, I have graves disease and my tsh has been stable for 1 year with carbimazole and thyroxine, 6 months ago I dropped to 5 mg of carbimazole every other day and continued stable. I have been told to stop completely but have reduced more slowly taking it every 3 days but I can feel symptoms returning. Does this mean I will go hyper again or does it take awhile to balance? Has anyone experienced this?

[Lalatoot]

I came of carbimazole twice and both times I went hyper again. It took a few months till it was really noticeable. Eventually had RAI as I couldn't get stable at all.

[GemmaZzz]

Myself and my sister were diagnosed with Graves and hyperthyroidism. I'm due to come off carbizamole next month so will be in a similar position as you are now.

My sister is very much ahead of the game compared to me and when she came off her meds she started having symptoms within a week. She opted for surgery and hasn't felt 100% since, lethargic, weight gain etc.

Sister also has a friend who went through the same and opted for surgery with block and replace treatment after. She feels great.

I'm planning on arguing for continuing with meds if the symptoms return. My argument will be that Surgery or RAI are permanent and I'm only need 5mg per day of carbizamole. Its such a tiny dose I believe there are unlikely to be any side effects.

[indiesnow in reply to GemmaZzz]

Hi Gemma, thanks for your reply, my blood has been normal now since last summer on 5mg carbimazole every other day. I have been told to stop completely but taking it slowly on 5 mg every 3 days for a month now reducing each month. I feel a return of some symptoms but my blood is 'normal' bang in the middle, it's so confusing. I also have symptoms I felt before treatment which they say are not normal thyroid symptoms such as tingling toes, strange sensations in my hands, pruney fingers(dehydration), heaviness which is a bit odd as they are they same symptoms I had before I started treatment. I am seeing the specialist next week so I will see what they say. I will keep you posted.

[GemmaZzz in reply to indiesnow]

I'd love to hear what they say because I feel my clinical symptoms were there a long time before they showed up in blood tests. Best of luck to you x

[indiesnow in reply to GemmaZzz]

That is the point I will press because it was the same for me, I will let you know

[Lora7again]

I was overdosed on PTU so my TSH was 9 so I stopped it cold turkey and took levothyroxine for a few months which I eventually stopped. Dr Skinner told me to do this and it worked. He was an extremely good Doctor and I wish there were more like him.

You really need a blood test to see what your levels are now so we can advise you. Also join Elaine Moore's site she helped me a lot when I was first diagnosed.

elaine-moore.com/