Carbimazole - tell it as it is !: For Graves... - Thyroid UK

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Carbimazole - tell it as it is !

Angel20
Angel20

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

33 Replies
oldestnewest

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.

Angel20
Angel20 in reply to bantam12

Thank you

It is refreshing to hear no problems with carbinazole

May I ask you did this drug affect your hair at all ?

bantam12
bantam12 in reply to Angel20

Didn't alter my hair at all.

Angel20
Angel20 in reply to bantam12

Thank you good to know

This drug is a life saver. So please do not be scared of taking it if it is prescribed for you. Many people take it without side effects.

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.

Angel20
Angel20 in reply to Qwerty12345

How was ptu compared to carbimazole were there any side effects taking this drug

Qwerty12345
Qwerty12345 in reply to Angel20

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).

Angel20
Angel20 in reply to Qwerty12345

That’s brilliant there is hope

Thank you

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.

Angel20
Angel20 in reply to purple64

May I ask you what dosage were you initially started on carbimazole

purple64
purple64 in reply to Angel20

I was on 30mg daily initially. Now on 5mg daily

Angel20
Angel20 in reply to purple64

Thank you

5mg is not so bad I suppose eventually you will come of carbimazole

When I was first seen by the Endo one year ago he suggested 10 mg to begin with

I did not take the tablets for the fear of liver issues hair loss and other horrible side effects

I am currently using bugleweed and l-carnitine started bugleweed only 2 weeks ago

I had palpitations and these are now gone

I am not cured however I wanted to try the natural medicine first ie bugleweed

We shall see

Carbimazole so far from what I read from you and others had non severe side effects

It’s good to hear

Lovehelp
Lovehelp in reply to Angel20

Hi

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.

Angel20
Angel20 in reply to Lovehelp

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

Acetyl L-carnitine 500 every day

Vitamin D3 every day

Silenium 200 every day

Vitamin A - once a week

Biotin twice a week helps with hair

Vitamin E 200 i.u

I will be adding Primrose for my hair

Exercise is import too at least min twice a week

Acupuncture once a week

I do not feel any worse than one year ago.

I have only started bugleweed 2 weeks ago.

Lovehelp
Lovehelp in reply to Angel20

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.

Angel20
Angel20 in reply to Lovehelp

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

Thank you in advance

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.

Reading your responses has given me hope.

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.

Angel20
Angel20 in reply to Jamrod

So pleased it has worked for you

Many conflicting stories about RAI

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.

Good luck on your journey

Angel20
Angel20 in reply to Keeleye

This is the worrying factor that carbimazole has this awful side effects

It takes a few weeks before they show in ones system

Furthermore with carbimazole it is not a cure for Graves’ disease it just masks the symptoms

Thank you for being up front for I want to hear from people that really had bad reactions to this drug

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.

Angel20
Angel20 in reply to Mikey3

Thank you Mikey3

How do you feel now with carbimazole had it made any difference to you

Are you now feeling better

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!

Angel20
Angel20 in reply to Mikey3

You had dizziness before taking carbimazole, therefore it can be ear imbalance, vertigo have you had your ears checked

Mikey3
Mikey3 in reply to Angel20

I’m seeing GP next week and asking for a referral. It’s either eyes or ears I’m sure. I’ve put it down to menopause and thyroid but I’m not so sure.

Angel20
Angel20 in reply to Mikey3

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

Just an update, I bought the Endocrine Bugleweed and Motherwort from the US

I have been taking bugleweed for Graves Disease, so far I have not noticed much difference prior not taking bugleweed.

There are so many articles that refer to bugleweed as the treatment for over active thyroid and yet personally I have not benefited at all.

Taking L-carnitine and Acetyl L-carnitine along with my vitamins D3, Magnesium etc has done much more for me than bugleweed.

One of the side effects of bugleweed for me its a puffy face in the morning after waking up.

To be honest I lost faith in the so called natural medicine.

Two prior natural medicine professionals and their protocols did nothing for my thyroid.

Many claims are being made with bugleweed as the herb that will cure Graves Disease \hyperthyroidism.

Motherwort is ok, it acts like a beta blocker and can help with heart palpitations.

So what's next.

I have a hospital appointment on the 30 January the last appointment was exactly one year ago.

Private blood tests for my own benefit, I want to see exactly where I am with my thyroid blood tests, whether any improvements or not.

I am still reluctant taking carbimazole what if I have severe adverse effects. This is the issue it is a gamble and is it worth taking it ?

Not sure

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