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.
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Sophitje
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Please do not get talked into RAI - if you must loose your thyroid go for surgery.
Is it possible to establish, what levels in hormone terms gives you a level of wellness now. thereby giving you some levels to aim for when having to replace them after surgery.
Can you also get written confirmation put into your medical records that post thyroid surgery, both thyroid hormones T3 and T4 need to be put on you prescription should you require both hormones supplemented in the future for you to get back to a level of well being that you find acceptable.
Thanks for your reply but I'm not sure I understand your post. What do you mean by 'it is possible to establish, what levels...' when I was on block and replace, therefore using thyroxine, I was feeling fine whenever I was in the standard range and not well whenever outside the range so back then I was pretty lucky that b&r was just a fine tuning and it worked well for me. A 8 year remission is quite long. Would have hoped longer or forever obviously... At the moment I am not looking at what's going to happen post op too much (I'm just pleased I won't have to take an ATD just an hormone) but pre-op especially since I have to take lithium. I was hoping to get some feedback from other graves sufferers who went through the same treatment.
My endo is not pushing for RAI at all, in fact the first option presented to me was the op and we've agreed on that. But they have to give you all options, it's their job and some people are terrified by surgery or even not suitable for it for all sorts of reason.
But I appreciate your comments about RAI, it seems to have more downsides than benefits.
Thanks for the info about t3 and t4. Hopefully my hypo management will be straight forward and I will only need the levothyrox, but I haven't started that journey yet.
I just thought that during this period of remission, when you felt well, it would help know what your T3 and T4 levels were - so that post operation you have a level of T3 and T4 that you might like to try and dose to.
Just read your post, how are you now? I was hyperthyroid and had the RAI ablation in 2012. Much better than trying to control with meds and taking betablockers for the hheartbeat.My cardiologist hit me over the head about it and he was right. Here in US was placed on Synthroid, felt ok, I always stayed at the hyper end of normal... but drawback was I went from 180 pounds to 216 over the 5 years.... now finding right levels of a Synthroid/T3 combo. Good luck to you!
Hello, thanks for your message. I'm well thanks. I had total thyroidectomy 5 weeks ago after taking lithium for about 6 weeks which controlled the overactivity of the thyroid well. The op went really well. I'm now on 100mcg levothyroxine and had my first post operation thyroid function blood test à couple of days ago only, I haven't got the result yet but I feel OK so hopefully I'm on the right dose. So far no weight gain but that's early days I guess. I do feel at times as if my heart is pounding , usually late morning so I wonder if it's a thyroxine rush and/or my body adjusting. I take it around 7am and wait an hour to eat. I am seeing the surgeon next week but the wound has healed pretty well, still a very visible scar obviously which will take months to fade but I'm not bothered about that. I'm also due a consultation with endo in May so will discuss the pounding heart episodes. So all good so far and no regret about the op (I didn't have the choice anyway!). All the very best wishes to you too.
So interesting to read about the lithium. Shame no one else has experienced it as it would be interesting to hear of other experiences on it. So glad it all went well for you.
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