Reducing carbimazole : I am still waiting for... - Thyroid UK

Thyroid UK
101,271 members115,597 posts

Reducing carbimazole

I am still waiting for tests to confirm what type of thyroid diagnosis I have, and I have an appointment with private doctor on Friday.

I have been on 20g carbimazole for about 8 weeks, and initially I felt fine, but in the latter week or two I couldn’t sleep and felt like I was on cocaine!!

So I decided to self reduce meds. I reduced to 15g - felt ok, reduced to 10g - felt ok, reduced to 5g but had a slight heart palpitations so have gone back up to 10g.

I know some people reduce meds on alternate days, does that make it easier for your body to get used to a reduced dose? Or should I stick with 10g until I see the private doctor?

23 Replies
oldestnewest

Hi oopsy you should not reduce like that its too soon, you should be getting your bloods done first to check your levels and then reduce but you need to understand your levels!! You should not reduce that soon and keep going down all the time you will make yourself very I'll, , it has taken me one year to reduce meds to 2.5mgs and 2.5 every other day for last 6 weeks, dose changes should be done no sooner than every 4 weeks really. Most endos will go bananas if you have self medicated but people do do it when they have their bloods checked first.

You have probably reduced to to much , carbimazole is a serious medicine and is quite toxic and if you reduce to much you can put your body in danger of a thyroid storm.

So sorry if you think I'm telling you off I'm just concerned for you, stick with 10mgs for now, your body takes around 4 weeks to adjust to each dose change, we have to wait until the old dose has gone through our body before thyroid levels adjust again.

Read as much as you can about your disease and understand how carbi works on your body

3 likes
Reply

Sorry my phone kicked me out before it finished, you may have messed things up for now but make sure you get new bloods done for Friday so they can adjust dose accordingly, you may get a telling off from your doctor but bite your lip- lol its too soon for you to start self medicating when you are still a newbie too the disease. Hope you settle down but it will take a few weeks.😁😁

1 like
Reply

You need to titrate slowly over time so your body can adjust accordingly , it should not be done in a very short space of time, you will find some people have to go up and down with carbi, you can be on carbi for 18 months yet.xx

1 like
Reply

Thanks Rmichelle. I don’t think your telling me off at all 😊 this is all new to me. My Endo said stay on 20g until mid October, but there’s no way I could do that as I just couldn’t sleep.

My last t4 was 14, and I was so worried about going under active.

I will stay on 10g for now and see what doctor says on Friday.

I have been reading about adrenal fatigue, could that sometimes cause thyroid problems?

Reply

Endos do like us hypers to be hypo as its less dangerous, I was hypo back in December and that was hell too, please make sure you get regular bloods done every 4 weeks to check your levels and post them on here, how can Endo say stay on that till October without doing bloods?? Its not unusual for us to go hypo if you do then say to Endo you want to reduce it takes a long time to get the right balance of carbi and you have cut it down to quickly with different doses so your body does not know what's going on, every dose change I've been on I get symptoms of palps, breathless, trembling and it settles down in a few weeks . I do not know very much about adrenaline's but I think it has a lot to do with the thyroid, the thyroid controls everything from our brain to how our body works, I need to get my adrenaline's sorted myself, look after yourself oopsyxx

Reply

Thanks Rmichelle. I was so scared of going hypo, but I couldn’t get a reply from Endo, so I decided to see private gp. Hopefully I will get bloods tested Friday and at least know what is wrong so they can start medicating me properly. I will keep you updated x

Reply

Remember nothing happens quickly with the thyroid- its a year on with me and occ health and gp are still saying not fit for work!! I wish you luck.🌟🌟

Reply

Concur with Rmichelle. Many of us self-medicate - so don’t worry about that. However! Please be super careful about how quickly you reduce your dosage - go very slowly. Once you reach a point where the dose is very small you can then switch to every other day. Hopefully you will have a good doctor who will be able to support you. The thyroid is part of your endocrine system and as you have been overactive it may well have put a strain on the adrenals. Your private gp will no doubt be able to advise here too.

When you post again - put in your test results and then others can comment/advise. I can also recommend Elaine Moore’s forum for Graves/hyperthyroidism.

All the best for Friday.

xCarole

1 like
Reply

Thank you Celora. My dr is ok but doesn’t really know what she is talking about which is why I am seeing private dr. I have been keeping a record of my bloods and as they were back ‘within range’ I was being a bit over optimistic and thought I could reduce the dose quickly - I won’t be doing that again!

I asked my dr if thyroid can be brought on by stress and she said no, but as I had been stressed at work i thought it could be connected.

Reply

Stress is a major trigger with thyroid disease, this proves that GPS know jot!! It really irritates me, I hope you find a excellent Endo as I'm on Endo number 3 , good ones are very rare, also remember going privately does not mean you will get better advice as many people here will agree with that. Learn from this site oopsey its forum members may not be medically trained but what better advice can you get from people who have been there and worn the t shirt!!😁

Reply

Yes that’s what I thought, but my gp said it wasn’t stress related 😡 I’m going to private gp for full blood test, and see where I go from there.

Although I hate being on carbi I refuse to stay on 20g.

Don’t know where I would be without all the help on here x

1 like
Reply

Remember steady!! Don't reduce unless you have your blood results and understand them, do lots of research and listern to people on here, the people on here are amazing, we have a chat, giggle, cry, get angry, put the world to rights, you are in fab company.🙌🙌

2 likes
Reply

Rmichelle is right - many of us have noticed symptoms getting worse if we are feeling stressed-out for some reason. To be avoided if at all possible ! (But easier said than done, especiall in the early stages, as anxiety is itself a symptom of being hyper),

2 likes
Reply

Hi again! Agree again with Rmichelle. I find cutting up the Carbi ok - it is the tiny pink ones that just disintegrate!

I’m not sure about the comment by your gp about stress/thyroid! Obviously if you have had a wonky thyroid - stress will play havoc with it. And if you have been under prolonged stress - then it could trigger problems - again because the whole endocrine system has been under strain.

My own situation....I was never on meds but monitored. Wish now I had investigated far more.... I went hyper after trauma. Back in range but another trauma and it went hyper again. I think my body had never been given enough time to settle again.

Currently I am on 1.25mgs and because two private people had said I am likely to be in remission - I had cut back - but even from small dose - my body went a bit crazy! So now I am waiting to see a private gp who has experience of over-active thyroids. My gp will not advise as I am under an Endo, who lovely chap has more knowledge re diabetes! However, he has been great in saying - you know your body/symptoms - take what you need - but keep it under control! My understanding is it takes a long time for a drug to be finally out of a body’s system.

Again, even experts have different specialties. I have been caught out as not all people have experience with hyperthyroidism. This forum has far more people coming on now with overactive thyroids.

I tend to research with Elaine, Dr Eric, Isabella, Dr Amy. All these people know more about what they advise because they have had the problem themselves!

Take care and all the best....slowly, slowly!

xCarole

1 like
Reply

Hi Celora I totally agree with the very small dose of 1.25mgs, I take that dose but in 2.5mgs every other day and started that several weeks ago, I had more symptoms from that tiny dose change than any other dose change- its crazy as I went from such a small change of 2.5 a day to every other, after 8 weeks it starting to level out I think👍.

But things have to be done very slowly with knowledgexx

1 like
Reply

Thank you for this - thought it was me! How could this time the reduction had such an effect for me! Feeling better now and more so as the heatwave has passed.

Take care. x

1 like
Reply

I do miss the heat a little though, take care😁

Reply

I find it annoying how the gp gives you a load of medication and then expects you to just get on with it.

I’m still convinced it was prolonged stress in my job which eventually knocked out my whole system.

Annoying supervisor who doesn’t help!

Reply

The people taking low doses on alternate days have mostly been on carbimazole for nearly a year, perhaps even longer.

if you've got Graves', to stand the best chance of achieving remission, you need to keep your thyroid under control. The problem is, your thyroid will have its own idea of what it wants to do, and as there is a lot of overlap between hyper and hypo symptoms, it's difficult to titrate on the basis of symptoms alone, especially within the first couple of months.

That said, an eight week gap between your first two tests seems a bit long - when first diagnosed, you really need tests every four to six weeks, as some people's levels reduce very fast, others much more slowly. On the NHS, we don't always see our endos every time we have a test - sometimes, they may issue us with a couple of forms, with an appointment at the eight or twelve week stage,. They then call us if any interim adjustment needs to be made following a test. If you really do feel unwell, you can always ask for a test to be brought forwards.

2 likes
Reply

Great info Valarian so easy to understand for a newbie, I was hoping you would help oopsy out.😁😁

2 likes
Reply

I was told I haven’t got graves, which is why I am seeing a private gp.

I have had tests every month, and my levels were back to ‘normal’ after about 8 weeks. I think I was just being a bit over keen at being ‘normal’ and just wanted to reduce my dose as I literally couldn’t sleep.

Feeling like you are on crack cocaine is not normal 😳 It seems like a fine balancing act between the occasional letter from Endo and doing things yourself x

Reply

If you haven’t got Graves’, you shouldn’t need to be on Carbimazole for so long anyway.

1 like
Reply

I think someone else on here said I shouldn’t be on carbimazole if I don’t have graves. My personal opinion is that I shouldn’t be on carbimazole, or maybe a much smaller dose.

This afternoon I fell asleep for a couple of hours which is not usual for me!

I’m going to stay on 10g for now, and wait for the blood results from private gp - she seemed quite helpful and I have to go back next week x

Reply

You may also like...