Hello everyone.
At the moment I'm on 2.5mg of Carbimazole a week, does this low dose is even making any difference? My tsh remains in range so I was wondering if this is the time to stop it? I've been on treatment for a year, I know the longer we stay on treatment the better are the chances for remission, but this is such a low dose I was wondering if it's making any difference.
Thank you
The only way to tell is to stop it. Then monitor your hormone levels and your symptoms.
What does your endo say unless he / she has forgotten all about you that is? What are your blood test results like? Sounds like they aren’t pushing you to stop which seems surprising (to me)
Having had Graves in the past I’d be tempted to stay on it for as long as possible even if you think it is just a tiny amount and you don’t need it. Why do you want to stop - Is it making you feel ill?
My Dr actually thinks I'm taking 5mg every 3 days. I reduced the dose on my own and she doesn't know. I only use my Dr so I can easily get blood tests every 6 weeks (I live in New Zealand, so things work differently from UK). My Dr said if my tests remain normal on the next test, she will stop my Carbimazole. I feel great and no symptoms at all, I want to stop because I feel like 2.5mg is so low that is not even making much difference to be honest.Ps, I'm hiding this from my Dr because she didn't really take in consideration my situation, I felt like she was just following a general protocol in prescribing the dosage, I decided to drop my dosage because when I followed her advice my tsh was going up a lot, I didn't want to become hypo, even after telling her that,, she didn't want to lower it so I did on my own. And it worked, I was able to manage it and keep it in a good range, if I'm able to maintain in range with 2.5mg, imagine what 10mg would do in a week 😕
Hi, in what way it helped you being longer on Carbimazole and what happened when you stopped it? I have to say and it is only a theory of mine after I have been talking with people with Graves, everybody's body is different and it will react differently to any given medication. I also believe that it is better to work according to the symptoms and less with the blood tests. Fifty years ago, doctors were relying more on their day by day experience than the blood tests and they were so much better at what they were doing.
I was treated by block and replace which involved 40 mg carbimazole every day throughout the treatment plus increasing amounts of levothyroxine. When I started my treatment I was told it would take a year and it did - it took exactly a year. However I was constantly being told that should I relapse then I would be given radioactive iodine. Fortunately I’m still in remission 11 years later but since then evidence now says the longer you stay on AT meds the better your chance of a lasting remission which I think is good and in view of that if I were being treated again I would want to stay on carbimazole for as long as possible. On the other hand I felt very well while I was taking carbimazole.
That is really good that you've been in remission for 11 years, you said that if you had to the treatment again you would like to stay on it for longer? Why is that? Seeing that you have been in remission?
Yes, it is good isn’t it.
Through my treatment I was always being told that if my block and replace didn’t work and my Graves ever becomes active again I would be given radioactive iodine - every time they said that I said I didn’t want it.
When I was signed off by the endocrinologist I saw my own GP and asked if I could be forced to have rai, answer was No, I then asked if the hospital could refuse to treat me if I refused to have the rai and the answer to that was also No.
So I would far rather be treated with carbimazole than be given radioactive iodine. Once your thyroid has been destroyed you are pretty much at the mercy of your GP and how well they understand the thyroid and how they are prepared to treat you - and that was how I felt a long time ago before all the problems people are having even getting an appointment. I imagine things are a lot worse now.
Thank you for your reply, one more question please...What do you attribute your remission to? I mean the Carbimazole helped but have you done any other change to keep your thyroid healthy? Any diet change or any other supplement?
I made sure my vitamins and minerals were well up in their ranges as advised by TUK - believe me I owe my sanity to TUK.
I got a lot of rest - I was ridiculously tired all the time - I was in my mid sixties which I’ve been led to believe is old for developing Graves but I met an acquaintance at the thyroid clinic who is around my age so I’m not sure about that however I was very, very tired. I was also fortunate that my family are grown up and there was only my long suffering and very domesticated husband and I at home.
My muscles were very weak and I lost masses of weight. Before it started I was doing a lot of long distance coastal walks and I had to stop that because I had no energy. I also had to give up my part time job invigilating exams at a sixth form college because I felt too unreliable, that made me really sad because I loved doing it, however this all happened in November and I was able to start back again for the May exams.
I was also a member of a gym and I was determined Graves wasn’t going to rob me of that so I turned all the machines down and basically I went for the company. I also kept going to Pilates but my teacher is a physiotherapist and she was able to adapt things for me. It took a long time before I felt able to go for long walks but it did happen eventually. So I did some exercise but didn’t push myself.
Anyway, I ate a very healthy diet, lots of fish, chicken, nuts and seeds. I cut out junk food, fizzy drinks etc but as you can see from my name I didn’t give up chocolate!
I also took full strength slow release vitamin C capsules, vitamin D3 1000iu and B12 spray (methylcobalamin) but I used to do regular finger prick home blood tests to keep a check on my levels.
A year of so later I developed inflammatory arthritis - yet another autoimmune condition - and decided to totally gluten free which I think made a huge difference. I thought I’d try if for three months and then test again and when I did my thyroid antibodies had dropped so I carried on and watched my thyroid antibodies reduce with every test.
I’ve been totally GF ever since. I don’t buy much commercially produced GF food, I tend to just look on the ingredients - I’m not coeliac and once you know what to look for there are loads of foods that are naturally gluten free. I joined coeliac.org.uk/home/ and got their amazing list of GF foods and ingredients.
What no one warned me about and which really annoys me was the link between Graves / overactive thyroid and osteoporosis and in 2020 I broke both bones in my wrist and discovered I have osteoporosis. I do wish someone in endocrinology had warned me of the need to do a lot more weight bearing exercise to protect my bones.
If you want to know the sort of things you need to do look at diet and exercise on this site theros.org.uk I wouldn’t let it scare you - I had a family history of osteoporosis- but it will let you know the types of food and exercise that will benefit your bones and the foods that will help your bones will also help your thyroid.
I think a positive attitude and doing as much as you can to help yourself is the way to go. I was probably quite (more like very!) selfish, I slept a lot and only did what I wanted to do and didn’t ever feel I ‘ought’ to do something to keep other people happy - the thing was I had lost so much weight I liked great on the outside but I was actually pretty poorly and some people thought I was dramatising the whole thing. However, I did it my way and here I am 😉
Apologies for the lengthy essay.
Thank you for the reply 🙂 Since finding out I had graves I did a lot research on it but also trying to understand any autoimmune disease, and the conclusion I got was gluten and processed junk food are horrible, so I stopped all that, eventually I have a cookie but very rare. Thank you for your testimony, it gives me a lot hope that Im on right track 🙂
Sounds like you are definitely on the right track. 👍
I think it helps to be proactive. My first post here was to ask if I would ever be normal again and yes, I am as normal as I’m ever likely to be.
Id say that my body took a while to get used to being ‘normal’ again, I’d been hyper for so long before I was finally diagnosed and treated that I don’t think my system knew what normal was like.
Three months before finally being diagnosed one GP actually said to me ‘I think you’re needing your holiday’! So patronising.
You are so right. They change the rules from one week to another. Not to talk about blood test results. It took me four months to find out my blood test results from endocrinologist.
Ha, I knew I was hyper with antibodies and when I finally saw an endo three months after I saw my GP and had the bloods donev I listened to all he had to say then I asked ‘Have I got Graves Disease?’ He stopped speaking and looked at me, then he pointed at me and said ‘yes, Graves disease - yes that’s what you’ve got Graves!’ I was left wondering if he would ever have brought up the G word if I hadn’t.
According to Elaine Moore the American expert on thyroid, Carbimazole doses as low as 1.25 mg. have an effect. As you say evidence now says the longer you stay on AT meds the better your chance of a lasting remission and you have only been treated for a short time. The fact that your TSH is rising on a low dose probably indicates your Antibodies have reduced. If TRAb was measured when you were diagnosed it would be useful to check again before stopping Carbimazole. With thyroid - slow and steady is best. I would stay longer on 2.5 before reducing to 1.25 for a while.
Yes the dr will test the antibodies next. And if it also improved she will most likely take me off carbimazole, I still have more than half bottle left so perhaps should I cut to 1.25mg for a few more months?
No one can say with certainty but it is what I would do. Good luck. Hope you have a lasting remission.
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