For Graves Disease carbimazole is the preferred drug given to those who have been diagnosed.
This drug is not friendly it is regarded toxic causing many unwanted side effects some can be very serious and life threatening the drug information states this clearly.
The question is how many of you have been cured
how many of you have had a relapse using this drug
and how many of you have had serious side effects
and also how do you feel about yourself taking carbimazole.
Tell it as it is - is an invitation to spell it out about your own experiences with this drug how well it was tolerated or not and whether you had side effects.
This topic is open to all
Your feedback is very much appreciated.
Thank you
ps. Happy New Year
Written by
Angel20
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Ive had Graves since I was 12 years old and that's a very long time ago ! I've been on Carb many times as kept relapsing but I've never had any side effects from it. As my levels were not controlled I had partial op in my teens then RAI ( my choice) in my 40s.
I had no problems with taking Carb and would do it again if needed but it won't be as I'm now hypo.
I was diagnosed with Graves 5 years ago and I felt very unwell with a myriad of symptoms prior to treatment. Within around 2 weeks of starting carbimazole I felt so much better - the difference really was night and day. About 4 weeks in to treatment I developed hives (urticaria) and although there was no way of knowing for sure if it was due to the carb or the changes in thyroid levels, I was switched to ptu just in case. I was a little anxious prior to treatment when I read about potential side effects but I really felt so unwell that I couldn’t wait to start treatment and living life again. And it became quite obvious very quickly that the tablets were working. Other than the hives, I experienced no side effects. I was on treatment for just over a year and have not been on treatment since. My thyroid levels are monitored twice a year now.
I had no side effects on ptu. Ptu is the second choice drug because it a slightly riskier drug in terms of serious side effects. Can I just say that although I developed hives on carb, it was not a big deal at all (especially compared to how ill I had been feeling prior). The issue was sorted very quickly and I had no hives while on ptu (or any other side effects).
Diagnosed with Graves March 17. Never had any problems with Carbimazole. Has made be able to function reasonably well, but that's due to the graves not the meds. If I can I want to stay on Carbimazole for as long as possible as I don't want to have surgery or rai. Thyroid levels are monitored regularly and antibodies are coming down slowly. I haven't had any side effects from the meds. The only thing I need to try and keep to a minimum are my stress levels as I find I can then be hyper with upset tummy.
Being new to this site I have just seen that you have been taking Bugleweed. Me too, only for 10 days and feel a bit better everyday. Have you taken any carbimazole? I feel very scared to touch it. I am also taking supplements.
I was diagnosed with Graves Disease January 2019 one year ago. The Endo did prescribe 10mg of carbimazole however I did not take them. I am still not taking carbimazole I threw these tablets in the bin to be honest. I am taking bugleweed tincture 5ml in the morning and 5ml bugleweed tincture in the evening, for now it is twice a day. I also take Motherwort tincture 5ml or as needed. Motherwort is for heart palpitations and reduces goitre size personally I do not have a goitre to which I am grateful. My eyes are not affected in any way.
In addition I take l-carnitine min 500 - 1000 mg every day
Thanks for the reply. I have not touch carbimazole yet. Like you I am taking alterntives. Please see my last post on my follow up blood tests, I posted today.
Have you seen dramtic results and are you prescribed bugleweed by a practitioer?
I feel concerned and you are the only one I can see who has/is following the same path as me.
It depends how long you have been taking the alternative medicine
I only started around 2 weeks ago
But I have noticed from your post that you are also taking other herbs not just bugleweed! It is interesting that your T3 and T4 are now normal however your TSH is extremely low 0.01 just like mine is this indicates Graves Disease and not Hashimoto ‘s
To answer you I have not yet seen a huge improvement
May we ask you please to list your herbs and dosage you have been taking and for how long
It will benefit others who have Graves Disease that may want to go the natural medicine way
10mg is not very much. Hair loss is part of graves as far as I know and not Carbimazole. Not everyone gets side effects and sometimes the graves is worse. I couldn't hold a cup in the beginning due to the tremors and my GP couldn't take my pulse for the same reason. I had lost 15kg in weight in a short space of time and was sleeping maybe an hour or so at night. So the meds were a great help. It won't stop any of the other random symptoms they are things we have to work out for ourselves and find ways of dealing with them. Maybe you should give the meds a try and see if things improve?
Angel..Graves is an autoimmune disease. Once you have it you will not be cured. You can however manage the symptoms and live a life. If you read the leaflet of any drug you will find lists of many side effects. To be honest we would ingest nothing if we considered the side effects which may not occur. This also applies to herbal and non standard treatments for ailments - we do not know what the side effects of them are.
Although I would prefer to stay drug free as ALL drugs have potential side effects Carbimazole was a life saver for me and restored me to feeling like my old self. I have taken it for over 4 years. Now on 10mg. Plus 50mcg Levothyroxine as a block and replace regimen with no side effects. I will happily stay on it for the rest of my life although I still hope for remission at some point. It was my treatment of choice as I did not want thyroidectomy or RA ablation.
From my reading of many posts here over the years, it feels like there’s a consensus opinion that if you can manage Graves with carbimazole or PTU, it’s better than having to have your thyroid removed or have radioactive iodine treatment.
I think most of us would wholeheartedly agree that if we didn’t have to take drugs or hormone replacement it would be great but with something like Graves, you can’t cure it. At best, you can hope for lengthy periods of remission. I’m honestly not sure that bugleweed or l-carnitine will make any difference—and remember, even so-called “natural” remedies aren’t all that natural, are unregulated, aren’t standardised and are often compressed into a tablet containing all sorts of other chemical binders. On balance, I’d take the carbimazole.
Looking back I probably had Graves Disease since 2017. The only symptom I had was a fine hand tremor. I was persuaded to see the Endo January 2019 hence the 10mg carbimazole he prescribed for me. The dosage is low however I do not have severe symptoms.
the tablets were thrown in the bin.
there is much confusion for natural herbal medicine. Since 2019 I have tried most avenues. My last resort is the bugleweed taking it with l-carnitine, vitamin D3, Magnesium, etc.
The hand tremor has subsided not so noticeable.
I have not ruled out carbimazole by the 30 January 2020 certainly I will know whether bugleweed is doing its job or not through blood test prior to my appointment at the hospital.
I was on carbimazole prior to having RAI treatment. I suffered with the very bad joint pain especially in my knees. The other side effects was a slight tremor in my hands. I was relieved to have my RAI treatment and now have a much healthier life. I have been on 200 mg of levo for the last three years.
I had an anaphylactic shock after a month of taking carbimazole for graves. Luckily I had it just as I got to the hospital (reluctantly taken by the ambulance)
I now have had my thyroid removed & feel like I have a new life.
Please note this medication works well for a lot of people, but just be aware of the signs.
I have been prescribed carbimazole and so has my dad. We do not have graves disease. We are meant to be hyperthyrpoid and have multi nodular goitres. We both need part of our thyroid out. I take 10 mg and dad takes 5 I think. I do not feel well and haven't done for over 12 months. I have been on the carb for 3 months approx now.
No i dont feel better and have told endo so today. My main issue is dizziness in the car when driving, but I cant say for certain what the cause of that is as I had it way before carbimazole and I am also post menopausal. Getting my eyes checked next!
I have Graves Disease and never had dizziness, certainly it needs to be checked out by ENT although I would not eliminate carbimazole as it could also be the culprit
I know this is old, but I'm interested in knowing how you proceeded. I was diagnosed with hyperthyroidism / Graves 6 month ago. I'm currently on 15mg of Carbimazole.I've just purchased motherwort and lemonbalm. I'm reluctant to try bugelweed whilst taking Carbimazole
Did you do AIP diet? Leaky gut and gluten are to autoimmune disease
Hello turbozI am not taking anti thyroid medication, I tried carbimazole 10 mg per day, 5mg am, 5mg pm, into my third week I had bad symptoms tummy was bloated, stopped eating which is very unusual when one has hyperthyroidism/Graves. My hyperthyroidism started from 2017 here I am into 2022. I was taking L-carnitine, other vitamins, now I only take vitamin D3\ calcium, vitamin A, fish oil vitamins, magnesium, selenium I alternate these vitamins with the exception of vitamin D3\calcium that I take twice a day.
I have actually put on weight! I went down to 40kilos from 50kilos and now I weigh 46kilos, still slightly underweight but I am eating feel just fine.
My hands do not tremble anymore, before I had a fine tremor. There is one thing I have noticed if I am stressed my hands start to tremble again, stress can and will make anyone who has an over active thyroid feel worse.
Last year December I had a thyroid ultrasound scan as I had a lump on my neck just below my chin, I went back and had a second ultrasound and I was told it was not anything suspicious it was just an enlarged gland induced from dental work it just flared up, completely gone now. Also I was told from the hospital that I do not have a goitre and they discharged me.
Everyone is different, my diet I eat anything I want! but I am not really a meat eater, very little if that, fish little, chicken little sometimes my meal is just vegetarian, I do eat bread too. Eat lots of fruit yogurts, plain yogurt, because I am not a meat eater I substitute with lentils, beans, salads, vegetables, breakfast is oats, breakfast cereals as these contain vitamins love my strawberries. I have never felt better.
Listen to your body
I have read that when taking carbimazole adding 500mg - 1000 mgL-carnitine not at the same time allow time in between will raise tsh much quicker, taking Acetyl L-carnitine when taking carbimazole will raise tsh alot quicker however, easily go the other way become under active. L - carnitine will raise tsh without becoming under active, personally I did not try this formulae, as I feel I am managing very well, I must be doing something right.
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Side effects from coming off carbimazole
Graves - Carbimazole - Joint Pain 
Is it bad for me to stay on Carbimazole indefinitely?
Is carbimazole only prescribed for Graves?
