Carbimazole, insomnia

[JuSa44]

Hello,

I write this from a place of desperation and despair. My hyperthyroidism has reared its awful head again and I have terrible insomnia. Last night I slept for one hour. Basically I only sleep every second night and it is not restful or rejuvenating because I feel as if I am so revved up, like a car in neutral and the accelerator pushed to max. I feel as if I’ve drunk ten Red Bulls, so sleep doesn’t come easy.

My question is, how long does this last? I’ve been on carbimazole for three weeks and I feel a little less nervous and pumped up, but the insomnia is not easing yet. How long does it take for carbimazole to kick in fully?

Also, I think carbimazole affects the skin and makes one burn more easily. I was out with my family yesterday and no one else got even slightly sun kissed, but I got sun burned quite badly. This doesn’t seem normal for me, so I put it down to the carbimazole. Maybe this is something we should watch out for!

Thanks so much.

[Fruitandnutcase]

Oh gosh! I know exactly where you are coming from and you have all my sympathy.

I had Graves back in 2012 so memories are a bit vague but I started off on 20 mg carb and had a blood test again after four weeks. My levels hasn’t changed much and I got a letter from my endo, who at that point I hadn’t seen, telling me to see my GP and get more carb and increase my dose to 40 mg.

I think people are sometimes prescribed a beta blocker along with their carb to calm things down but I have asthma and had to do without. The pumped out, pounding heart horrible feeling probably carried on to some extent until I saw the endo three months after I was first diagnosed and started the carb. I was treated with block and replace and after three months they introduced levothyroxine and I started to get back to feeling more ‘normal’.

I don’t know what age, I was 64 which I was told was quite old for Graves, or what your commitments are but I’d say try to get as much rest as you possibly can. In a way I found I had to be quite selfish and just refuse to do things I didn’t really want to do, I suppose up until then I was a ‘people pleaser’. Graves cured me of that. I found life exhausting. I was working part time and could choose my hours and in the end I just stopped trying to keep other people happy and I work altogether until I felt a lot better. There I would be - heading for bed when my husband got home at 6.00pm. One of my biggest problems was that I had lost so much weight that I looked really good! On the outside that is - inside I felt a complete mess.

I think three weeks is probably early days and it depends on how much carb you are taking. When is your next blood test due?

I don’t remember a problem with sunlight but it could easily be why you have become more sensitive. Since Covid I have found my skin overheats if I am in the sun so I tend to avoid it these days.

Also, I wasn’t ever warned but I’ve since discovered that an overactive thyroid can lead to osteoporosis so keep a check on your bones - ask to have a DEXA scan to see how things are and even if they are ok get lots of load bearing exercise, take your vitaminD3 and K2-Mk 7.

Hope you feel better soon but speak to your doctor / consultant if you don’t. Back then I didn’t think I would ever feel normal again but I did once I had been treated.

[JuSa44 in reply to Fruitandnutcase]

Thanks so much! I feel a little more reassured knowing that others have felt the same. I realize I need to play the long game and wait it out. I was hoping I would take my first dose of carb and feel instantly better! I do hope this passes soon. I have a blood test booked in two weeks. The insomnia is making me feel unhinged and crazy - it is testing me to my limits! I feel like I am also wondering if I will ever feel normal ever again! You give me hope that I will, so thank you.

[Fruitandnutcase in reply to JuSa44]

I know just wat you mean about crazy. I thought I was actually going off my head, mentally ill. It is the most bizarre condition isn’t it. I hadn’t been well for ages and had the runaround fr9m another doctor but I had a very near miss in the car, saw the doctor next day, had bloods d9nt the day after that then I came home to find a message on the phone to say I had a very overactive thyroid with antibodies, she had left a prescription at reception for me, she’d made an appointment with a consultant for me and to come back in four weeks for more blood tests. I remember being totally shocked that there was I feeling so ill and yet it was going to take three whole months before I could see a consultant. Like you I thought once I started on carb I’d be fine right away. Took a bit longer than that - well when I saw the consultant he said they treat the ‘quick’ way with block and replace and that would take a year! A year wad not my idea of quick but it did take exactly a year.

So good luck, stay strong, it’s not you that’s the problem - it’s your thyroid

[helvella Administrator Thyroid UK]

It appears that few patients ever have carbimazole explained to them - at least, by the doctors they have seen.

Carbimazole works very quickly indeed. It reduces the rate of thyroid hormone production in minutes to an hour or two.

But if you are hyperthyroid, you have lots and lots of thyroid hormone in your body. It is that which takes time to dissipate. And, until the thyroid hormone levels drop, you will likely only get slight improvement.

This takes possibly several weeks. And, when it happens, it can be a shock as people go from being hyperthyroid to hypothyroid in a very short time.

If your carbimazole dose is sufficient, that is what should happen. (Obviously, on too low a dose, your production of thyroid hormone doesn't reduce sufficiently for levels to drop.)

Another factor is that carbimazole has a short half-life in your body. A dose you take in the morning can have almost entirely disappeared by the next morning. Thus the thyroid can 'escape' the effect of the carbimazole for a while each day. Inevitably, this delays reaching the point at which you are no longer hyperthyroid. This is why it is reasonably common to split dose - two or three a day.

[JuSa44 in reply to helvella]

Thank you so so much for explaining this to me. It helps me a lot.

[pennyannie]

Hello JuSa44 and welcome to the forum :

There is nothing on your Profile page so can I ask have you been diagnosed with Graves Disease and have positive, over range TRab- TSH Thyroid Receptor Antibodies ?

These antibodies can be blocking, stimulating, or neutral at any given time - and interchange throughout the first phase of Graves Disease - and it can feel like being on a a roller coaster of symptoms without any of the fun.

An Anti Thyroid drug - such as Carbimazole - is prescribed when diagnosed with Graves which is an Auto Immune disease for which there is no cure.

All the AT drug does is semi block your own new daily thyroid hormone production while we wait for your immune system response to calm down and hopefully offset the worst of the symptoms being tolerated.

As your immune system calms back down, your dose of the AT drug is slowly titrated down with a view to working towards your thyroid recovering normal function without the need for any drugs.

How long have you been diagnosed with Graves, and how are your eyes, dry, gritty, watering excessively, light sensitive ?

Here is the most recent research we have :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

For all things Graves you might like to dip into Elaine Moore's books and website - elaine-moore.com

[JuSa44]

Yes I’ve been diagnosed with Graves and have high receptor antibodies. My previous three Graves incidents were after the birth of each of my three kids. It was postpartum thyroiditis/Graves that disappeared after a few months but now it has now resurged. The trigger is puzzling to me. I had bad gastritis in November and I wonder if that stuffed up the equilibrium in my body. My eyes have always been very sensitive and I saw an ophthalmologist when I was first diagnosed in 2013 and apparently they were not affected yet.

The last three times I had issues, I never had insomnia. It is absolutely formidable. It makes me feel unhinged and exhausted and weak to the core of my being.

Thanks so much for your advice. I appreciate it!

[Millea]

Hello. So sorry you are having such a horrible time. I can sympathise, as I was diagnosed with Graves’ disease in 2015. I dreaded the nights more than anything because, like you, I felt hyper wired, jittery and it was like my heart was in my head - pounding away.

Unfortunately, depending on how long you’ve been undiagnosed hyperthyroid and what your level of excess hormone is, it will take a while to see that level reduce to a point where you start to feel any noticeable benefit. The carbimozole blocks your thyroid from producing any more hormone while your body slowly uses up the excess already produced. You will normally be put on a 40mg dose to start with and should be doing a blood test every 6 weeks followed by a consultation with your endo or GP a few days after that to track your now (hopefully) dropping hormone levels. As your levels drop, and begin to move towards a normal level, your carbimozole dose will be reduced.

It took about 3 months for me to really start to feel the benefit, but I did start with an incredibly high hormone count when I was diagnosed.

I was also put on propranolol (beta blocker) at the same time as my initial dose of carbimozole and took propranolol for approx 2 years.

I am still on carbimozole at 10mg a day, as my graves has never fully gone into remission - however, I no longer have any symptoms. My endo has trialled taking me down to 5mg a day but within weeks my hormone levels rise so 10mg seems to be the sweet spot for me. I can’t say I’ve seen any adverse effects from the carbimozole and I’ve now been on it for 9 years. I can’t really comment on the sun sensitivity - as I’m pale skinned (Irish descent) and have always burned in the sun. Maybe others will have experienced this and can advise.

The truth is it will take a few months to see and feel the benefits of the carbimozole but you should check you are on a high enough dosage with your health professional and whether you should also take propranolol in these early days. You are on the road to feeling better but it will take time.

[JuSa44 in reply to Millea]

Thank you so much for your reply. I thought I would instantly feel better as soon as I took the carbimazole, but it is taking time. I’ve been on it a month now and I’m only now starting to notice a slight improvement. The insomnia is still bad and hopefully that will get better soon too!