Just diagnosed with hyperthyroidism and need advice

[looney1]

I have just been diagnosed with Hyperthyroidism and was told my results were quite high at 35. I've been prescribed 40mg Carbimazole. Could anyone advise whether it's best to take them in the evening to aid with sleep?

[PinkNinja]

Hi and welcome

I'm afraid I don't know much about carbimazole but there are plenty on here who do. I have edited the title of your question to add 'with hyperthyroidism' so that those with the relevant experience will notice your question more easily. I'm sure you will get the advice you need

Carolyn x

[helvella Administrator Thyroid UK]

Welcome.

The Summary of Product Characteristics document for Carbimazole says this:

The initial dose is in the range 20mg to 60mg, taken as two to three divided doses. The dose should be titrated against thyroid function until the patient is euthyroid in order to reduce the risk of over-treatment and resultant hypothyroidism.

medicines.org.uk/emc/medici...

Carbimazole has a relatively short life in your blood, so split dosing may be sensible. However, this is absolutely NOT to suggest over-riding what your doctor has told you.

As someone who is hypothyroid, I take my levothyroxine at bed-time and, in common with a fair number of others, find I sleep better than before being diagnosed/prescribed. Nothing in the world of thyroid is ever obvious, simple or easy. So I don't think it obvious what effect taking carbimazole at night would have (that is, rather than in the morning). Hopefully someone with experience will tell you what they felt.

Just a word about something that seems to happen quite a bit. We see people left on their starting dose of carbimazole and allowed to become quite hypothyroid. If you feel that could be happening, go to see your doctor and get your blood tested again. Don't allow that to be how you end up.

I urge you to read the Patient Information Leaflet thoroughly. There is some important information that you need to be aware of.

All the best

Rod

[looney1 in reply to helvella]

Thank you for answering and for sharing what is good for you. The pharmacist took me into a side room and thoroughly explained possible side affects so I self certified for a few days. I do feel that the medication especially the Propranolol as the tremors through my body are a lot better. I have had my antibodies taken and the GP has said that my autoimmune system is affected. I am waiting for a hospital appointment but not sure how long this will take.

[TTLady]

Take the full dose is one go whenever it's easier for you but take the same time every day. Carb will not directly affect your sleep. Being hyper stops you sleeping when your levels come down you will sleep better 40mcg is a decent dose, give it 2/3 wks & you'll be a whole different person

[Joy333]

Hi,

I've been diagnosed hyper for 3 months now and like you my levels were very high. I was on 20mg carbo for around 10 weeks then had more blood tests done (tsh, t3, & t4) where the results showed there had been no change. I had my first endo appointment 2 weeks ago and was put on 40mg carbo for a period of 1 month then I've to go back down to 20mg and get more bloods done. Hope this is making some sort of sense... I am rabbiting on a bit aren't I.

What I would suggest is to perhaps get more bloods done in 6 weeks ish after starting your carbo because at 40 mg your levels may drop significantly and as Rod said many become hypo. Getting your blood levels done in around 6 weeks might be beneficial to you and meds can be adjusted accordingly. Carbo does take time to have an effect but hopefully the betablockers help with the horrible symptoms. I take my carbo at night before bed but that's just because I find it easier taking them then.

Take good care x

[looney1 in reply to Joy333]

Thanks so much for your reply. I have the next the 3rd round off bloods on the 27th so I hope to learn a bit more

[Fruitandnutcase]

Hi

I started out in November last year at TSH -< 0.03.(0.35 - 5.5 ) and FT4 - 38.5. (10.0 - 19.8) so I felt pretty terrible.

My GP immediately started me on 20 mcg carbimazole and I was on 20 mcg Carbo for a few weeks then I got a letter from my endo in January of this year after my first blood test raising my dose to 40 mcg and have been on that ever since.

I take my carbo in the morning in one go. I took it 20 in the morning and 20 at night for a couple of months then saw the endo who said to take it in one go so I do that now.

I take levo too ( because I'm on block and replace).

It didn't take long to start sleeping better even though I was taking it in the morning. I tried taking my levo at night but have found I feel better if I take it in the morning so I do that as soon as I wake up then take my carbo an hour or so later on. The endo I saw last time asked about how I took my pills and when I said I took my carb in the morning he asked if it was all in one go and when I said it was he said that was good so I figure that is how they prefer you to take it.

I found the carbo took effect pretty quickly - faster than I thought it would from what I had read in books, like the others say if you have beta blockers that will help the palpitations if that is what is keeping you awake - I couldn't take them because I have asthma.

I agree with what Joy and Rod say, try and get a blood test after a few weeks - especially as you started on 40 right away - because by the time I got my first endo appointment at the end of February I had unfortunately gone from hyper to hypo which wasn't very nice and I have heard of that happening to other people.

Good luck

Liz x

[looney1 in reply to Fruitandnutcase]

Thanks you for your reply and your advice

[shaws Administrator]

Just for future reference this is what Dr Toft of the British Thyroid Association said in a question/answer article:-

5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.

Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

[Granitecitygirl]

I started out on 20mg and have just recently stopped. I found it easier to remember to take my pill in the morning before going to work. I sleep like the dead anyway so I don't think it had much of an effect in that respect.

[Hidden]

Hiya, I was diagnosed with Graves Disease and thyroid eye disease 2 years ago my journey has been awfull, because my hyper was so uncontrollable I was talked into having my thyroid removed the Biggest Mistake ever in my life, stick with the Carbo as long as you possibly can, TT is just a cop out for the endos, my heart goes out to you, I do hope you have a better journey then I have, my life is such a mess now , but I don't want to frighten you, be strong and read lots of infro there is lots to learn and the endos will tell you not to go on the Internet!,,,, they just fob you off because they only skim the surface and don't know the half of it, my Endo fogged me off with seeing his 'specialist nurse' who knew nothing whatsoever about antibodies, they wouldn't give me the correct blood test, only tested TSH and T 4, you need T 3 and many more but they won't check them even when you insist, my treatment was and still is appalling, my marriage has fallen apart, my friends have deserted me....my family ...well forget them... I do hope you get lots of support and friends that totally understand, and Doctors that listen, god bless you xxxx

[Hidden]

I took my Carbimazole (20mg) in the morning. I would familiarise yourself with hypo symptoms and just be aware... I like others went under between blood tests and am now on Thyroxine to bring my levels back. Still don't have a firm diagnosis but getting closer. I did find Carbimazole took a long time to kick in and the propranalol was a god send for palpitations and tremors. Good luck x