Graves’ disease treatment. What to expect? - Thyroid UK

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Graves’ disease treatment. What to expect?

Edwina29 profile image
9 Replies

Hi all,

I got my diagnosis this afternoon.

The doctor has confirmed that my hyperthyroidism is caused by Graves' disease with positive TSH receptor antibodies. I have been prescribed carbimazole . 3×5 mg tablets in the morning. He suggested that I will prob not feel my optimum self for the next few weeks as I get use to the medication.

Mind you I am already not feeling my optimum self, my symptoms have become more intense over the past week with increased heart palpitations, hot skin, insomnia ( getting an average of 3 hrs) itching etc

I am keen to understand how this treatment has impacted others in the first few weeks and what I should expect or plan for? I.e should I lighten my workload for awhile at work etc

Thanks

9 Replies
Hkm2281 profile image
Hkm2281

I had a positive TRAb in dec then had to wait until endo appointment in match before I started carb at 40mg. It may take several weeks before it starts to take effect, I suppose I felt slightly better after a couple of months and T4 and T3 came into range after two months, TSH still not in range yet but that's normal. Good luck x

pennyannie profile image
pennyannie

Hey there again

Graves is said to be a stress and anxiety driven AI disease - so do what you need to do to try and switch off your brain and body.

I remember being signed off for a week from work and my main symptom of insomnia was resolved.

Your hightened metabolism will slowly come back down, and your symptoms reduce once the AT drug kicks in, but you may be tired, as though you've run several marathons while sitting on the sofa with your whole body and brain feeling worn out.

You'll need time to recoup and build back up your stamina and energy and it's a time to repair, rebuild and replace your core strength nutrients for optimal health as Graves ravages vitamins and minerals.

Be kind to yourself, be selfish, and start to listen to your body.

Carbimazole, has side effects, and hope you have the Patient Information leaflet and the doctor has explained what to look out for : there is another AT drug Propylthiouracil, called PTU for short, if this first one doesn't suit you : just saying as I read you are already itching which can be a side effect of Carbimazole.

Edwina29 profile image
Edwina29 in reply to pennyannie

Thanks. Some good advise.

asiatic profile image
asiatic

I felt much better after a few weeks on Carbimazole. Be aware you might need many dose changes and docs often don't monitor us Graves patients often enough and we can become overdosed and hypothyroid which can lead to Thyroid eye disease. It is useful to keep a diary of symptoms/ dose/ blood results to pick up any changes. I find my resting pulse rate a good indicator. Normally in the 60's it is 90 and over when hyper and will go lower when hypo. By becoming aware of any changes you will be able to ask for a blood test to check if you need your dose adjusted. With thyroid disease you have to be proactive to reach optimal health.

Edwina29 profile image
Edwina29

Thanks.

The increase in my resting heart rate was the reason the doc tested my thyroid, so will definitely keep an eye on it. Did u experience weight changes? I am concerned about weigh gain.

asiatic profile image
asiatic

My weight is normally pretty stable. I lost about half a stone before I was diagnosed and then returned to my normal weight pretty quickly after starting treatment.

Calliope62 profile image
Calliope62

Hi Edwina,

there is a lag between dosage and symptoms. the advice above, 'Be aware you might need many dose changes' is very true. Whatever changes you make in your dosage do it very slowly, in small increments, to allow for the lag. I learnt his from years of experience taking carbimazole. I have been in remission for over two years now and my final dose was a quarter of a 5mg tablet every other day, just to give you an idea of how gradually I reduced. This was my second remission; I believe the first one failed because I rushed at it.

You have to be very selfish, rest and take care of yourself as much as you possibly can. You may find Autogenics beneficial. I certainly did.

Best of luck to you!

Edwina29 profile image
Edwina29 in reply to Calliope62

Thanks

Lora7again profile image
Lora7again

Have you looked at Elaine Moore's site? She is a Graves' sufferer and started the site to help and advise others. There is a lot of useful information on there and you can join and post questions on her forum.

elaine-moore.com/

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