Coming off carbimazole

[Lisa254]

Hi,

I have now been on carbimazole for 14 months currently on 2.5 mg everyday since beginning of April. Over the last month I have been feeling so much better I can't even put it into words!! And finally I'm feeling I can put my life back together after my bumpy journey with this hyperthyroid illness. I am back to work, I'm running maximum 3 miles I'm actually socialising with friends (though have yet to have a long awaited glass of wine due to being too scared as it's triggered symptoms previously)

So I had my bloods done Tuesday TSH 2.41 (0.27-4.2) ft4 15 (12-24) ft3 4.5 (3.1-6.8) I have stayed in normal range since starting carbimazole 14 months ago and Friday I got a call from my endocrinologist who has told me to stop taking carbimazole eeeeeek and yayyy!! Such mixed emotions he made my weekend as I have been so ill on it but I'm scared of relapse but I guess positive thinking and everything crossed!,

My question is I have always suffered with side effects when I have had dose drops I'm wondering what to expect when you stop taking carbimazole??

I have been off it for 3 days now and it's so nice to wake up in the morning minus the morning sickness (I'm not pg) minus the groggy head and minus the I'm going to pass out when I first get up feeling! The only thing I have experienced today is a weird sensation in my brain I'm just wondering if anyone else has experienced anything when coming off carbimazole

(For anyone reading this just starting their hyper journey please read through my previous posts as I could not see a light at the end of the tunnel and I didn't think I would ever feel ok again!)

lisa 😊

[Kari55]

Hi Lisa, I’m delighted to see that you are doing so well. I have been following your posts and they made me believe that my husband can get better. I’m intrigued by what you said about alcohol and how it triggered your symptoms. Can you tell me a bit more about it?

[Lisa254 in reply to Kari55]

Hi Kari, thank you and I wish your husband a speedy journey to remission its horrible feeling so unwell! Did he try the auto immune diet? I didn't in the end.

I stopped drinking alcohol last September, I'm not a big drinker anyway but I found it really aggravated my symptoms the night I drank (even 1 glass of wine) and into the next day I would be woken up with a crazy racing heart rate it went to 140 one eve and I just felt worse after drinking in general. I don't know if it was the carbimazole mixing with alcohol or the sugar content as I also then cut out sugar from my diet except honey and polos for my nausea! (I'm not diabetic or have any probs with sugar) 😊

[Kari55 in reply to Lisa254]

Thanks Lisa. My husband went out to dinner with work and felt pressured to have a drink but in the end he refrained from drinking anything. Maybe it’s not a good idea for him to try alcohol yet. I told him what you said.

He is still on autoimmune diet which helped his gut issues enormously and now he is reintroducing some foods. His endo isn’t great and he has reduced his dose 3 time himself, she did not mind.

Really well done to you for restoring your health x

[Lisa254 in reply to Kari55]

It is great your husband is still able to work I was on off work for the last 9 months I'm so lucky to work for the company I do 😊. Yes your husband made the right choice I think everything he can do for himself now will speed up his recovery and achieve remission. It's weird as I have had digestion probs since my early 20 s but advise from this site after my diagnosis I went gf soya dairy and sugar free it has really helped I now eat these foods on odd occasions but It's really made me look at labels and how many random ingredients are in our food!

I feel like I managed my dose too but I always told my endo what I was doing and luckily he has always supported me. I think we know our bodies best 😊 Wish your husband well x

[Kari55 in reply to Lisa254]

I think he is on a right path with the food, medication, removing pollutants from environment but he is struggling to deal with stress at work. I’m really worried about it to be honest as he isn’t great at managing the stress despite of trying to meditate etc. Fingers crossed he achieves remission at some point next year. All the best xx

[Rmichelle]

Hey my lovely inspirational friend🌟 you know how happy i am for you, and i hope you continue to do well, i was only thinking back today what a long journey for us both, i too as you know are on a new dose and have been feeling better than previously with my thyroid. Im sure what you are experiencing is withdrawal symptons. Onwards and upwards-i will watts app you tomorrow.xxxx

[Lisa254 in reply to Rmichelle]

Thank you 😊 I literally have everything crossed!! Yes it has been a long journey for us both especially back in the day when we were dying swans on the sofa check us out now!, I am so pleased your feeling better on your new dose will catch up with you tomoz xx