Carbimazole Experiences please

[Read58]

I have my 10mg prescription for carbimazole, after a positive TRab. My T4 is only slightly elevated, T3 twice the acceptable level, ( as i’ve been monitored over the past two/ three months the levels were going down slowly anyway with out treatment .)

I would really like to hear anyones experience with carbimazole. I feel reluctant to take it, if i’m honest, actually scared!

I feel because my levels aren’t massively over, i could go without it, but i just don’t know what to do for the best. Confused and fed up ☹️

,( also i have hashimoto and think six weeks on carb before they check my bloods again will put me into hypo big style)

[PurpleNails Administrator]

I have been taking carbimazole 3 years for a solitary toxic nodule.

At diagnosis my FT4 was borderline high & FT3 nearly double, so very like yours. My TSH was undetectable & I found out later it has been suppressed in a test 4 years previously but was never advised.

I was started on 20mg & was tested 2 months later, & levels were borderline low and dosed reduced to 10mg. I had lots of adjustments but currently on 10 - 5 alternate days.

Have you read through the patient information leaflet dispensed with medication?

There are some very rare serious reactions which occur in a <1%

Any of these signs means you need a urgent full blood count test.

* Any infection such as a sore throat or mouth ulcers of think you may have an infection

* Fever

* Unusual bruising or bleeding

* Feeling unusually tired

The blood count which will show if your white cells (there are several types) is low.

Although extremely rare you do need to be vigilant for any symptoms. Read the leaflet more than once and reread it every once in a while.

6 weekly until stable on carbimazole is standard but I understand your concern about becoming hypo. 10mg is a low dose. I think I would arrange a private test of TSH, FT4 & FT3 in between, if GP or specialist refused to. (monitor my health is reasonable). Especially if I felt I was getting any hypo type symptoms.

Ensure your adjustments are by FT4 & FT3 as the TSH will be unreliable.

There no food you need to avoid when hyper or taking carbimazole. In the past I’ve have taken with food, coffee, supplements & other medications and it’s still effective. I feel absorption is better on empty stomach and means you can take the lowest dose. The consistent timing is more important than what it is taken with. Initially spacing the dose out 12 hourly eg 08.00 & 20.00 can be beneficial as it helps reduce the thyroid production more evenly. Taking 1 dose is totally safe but leaving a wider gap between doses might allow a window to start producing more hormone.

Do you have hyper symptoms currently? I’d have said I was fairly well when I was diagnosed but looking back I had gradually adapted to symptoms without realising.

[Read58 in reply to PurpleNails]

Hi PurpleNail, thats all great advice thank you. Yes i have hyper symptoms, episodes of rapid heart rate and elevated pulse, tremors and diagnosed with TED. All these came on quite suddenly about 8 weeks after the first blood test had shown hyper levels. I refused the Carbimazole thinking it was a Hashis Flare. I’ve seen the gp again today and shes been really good. She understood my fears re white blood cells, hypo , liver function, etc and has given me a blood form to do in two weeks for all these concerns and another for six weeks time. I think the same as you, when you’ve been hypo/hyper for a few years, feeling CxxP becomes the norm! (I did tell the doctor if she’s waiting for my tsh to rise, she’ll be waiting a long time). Thanks again for taking the time to reply, I appreciate it. All the best to you too

[PurpleNails Administrator in reply to Read58]

I’m sorry you also developed TED have you been referred to endocrinology for the hyper and ophthalmology for the TED.

Your GP sounds quite good. & your right about the TSH mine hasn’t risen into range even with rock bottom FT4 & FT3 levels.

I also have eye issues very TED like, it’s a long tale (on my profile)

[Read58 in reply to PurpleNails]

My eyes were the very first sign that something was amiss, probably a month or so before the blood tests showed hyper. I went to the optician for an eye test etc because of the difference in my eyes, one was bulging, different sizes, sudden onset lid drooping. The optician immediately recognised it as TEd and she did an urgent referral. Optician and GP , i can’t fault them. My gp has referred me and liaises via email with the endo, while I’m waiting to see them. I have full online access, so can see everything they say about me🤣( i’ll read your profile). Thanks again.

[Ex111]

Hi ya - I started carbimazole 5mg in feb and this was raised to 10mg in August . I’ve had no side effects. I think everything I feel is graves symptoms . When my levels shifted hyper in August I started to feel sick, vomit and extra tired . This all went away once the dose change took effect. I also have thyroid eye disease and Graves skin problems.

My point is , when I was first diagnosed I thought I felt normal but after six weeks of meds I just felt different. My mind cleared , my emotions calmed down and I felt so much better . My levels have never been massively high.

[Read58 in reply to Ex111]

Thats good to know, thank you. I keep reading all these horror stories of side effects and people saying they’ve put on stones in weight etc. thank you for taking the time to reply. Best wishes