I was diagnosed with graves disease in 2007 then treated successfully with block and replace until 2010 with no side effects from the carbimazole. I was also diagnosed with mild thyroid eye disease but thankfully the symptoms settled well once my thyroid levels were in range.
I was in remission for over 8 years but very suddenly relapsed (1 month ago) and put back on carbimazole at the beginning of January. I was trying to be positive and hoping that the same treatment would work a second time. It wasn't to be... 3 weeks and a bit later I suffered the bad reaction from the carbimazole that everyone fears (agranulocytosis, drop of white cells), was admitted to hospital on Monday night, put in an isolated room (one perk!), on IV antibiotics and shots to boost the production of neutrophils by the bone marrow. They did all the required tests, I had no major infection (mild upper respiratory infection) and reacted well to treatment, my blood count recovered quickly and I was out after 3 days.
So now the plan is to have my thyroid removed and I'm pleased with that. Frankly I can't wait to have the damn thing removed. RAI is also an option but I'm not keen at all and thankfully my endo (she is brilliant) agrees and will organise surgery for me. She thinks RAI it's not worth the risk because of the TED history, even if it is 'mild'.
Thankfully I've had enough time on the carbimazole, almost 4 weeks to reach a almost healthy level, still overactive but not by too much and the symptoms are managed by the propranolol. The eyes are fine so far, touching wood because this is my biggest fear.
So now, because I can't have the standard ATD anymore (carbi, PTU), the only way to control the thyroid is lithium. I've been put on 400mg twice a day, and I am also on propranolol 40mg 3 times a day.
I only started the lithium last night so no major side effect to report but it's early days. Lithium is usually used for bipolar disorders and the level in blood needs to be checked carefully. It has an anti thyroid effect.
I couldn't find any post on here about the temporary use of lithium for an overactive thyroid to prepare for surgery. There are a few medical papers on the web but noone sharing their real life experience. Although temporary, it is a very last resort treatment so not at all common.
Does anyone here had the same treatment or know of someone who had? If so I would love to hear your/their story. If not I hope to be the first one on here to share my experience and hopefully help others in the future.
*A note about the carbimazole reaction: I want to outline that I only had a mild sore throat, no temperature, just feeling very achy and tired, a bit like a flu. The carbimazole warnings emphasise strong symptoms 'severe' sore throat, mouth ulcers. I think this is a bit misleading.
My GP after examining me said that he really didn't think that it was the carbi, probably just the beginning of a cold or flu and I wasnt feeling too concerned either. Of course he did blood test anyway and when I got a call from him a 7pm I knew something was wrong. At the hospital on the next morning the doctor was also astonished that I had no fever (it came the day after but only mild) and my throat was red and sore but not infected as such. So it is important to get checked if you are feeling under the weather while on carbi.