Graves disease

Hello, I have just been diagnosed more or less with graves. Just need to get antibodies test done to 100% confirm it. My levels are quite high. I was told about 3 options, medication, iodine and surgery. I have opted for medication and if that's unsuccessful I would go for surgery.

Can anyone advise if taking medication is effective or is it better to just have it removed? What is life like after surgery? Really want this to be over and I have a feeling this is only the beginning.

22 Replies

  • Winter87, after 6-18 months on Carbimazole thyroid may re-regulate and you may have remission. Remission is less likely to be permanent if you have positive Graves antibodies.

    You should have 4-6 weekly thyroid blood tests to check levels as too low a dose of Carbimazole will leave you overactive but too much and you will become hypothyroid.

    If remission fails you can resume Carbimazole or consider RAI or surgery. RAI is contraindicated if you have thyroid eye disease (TED) as it can make it worse.

    My sister had RAI when remission failed after 11 months. TED is slightly worse, but she's otherwise adapted well to being hypothyroid and on Levothyroxine and doesn't regret having RAI. In my opinion she is slightly under medicated but won't consider increasing dose as she has a horror of feeling hyper again. Others don't transition so well and will tell you to hang on to your thyroid gland as long as you can.

  • Hi Winter87,

    I'm a fellow Graves sufferer. Hang in there and don't make any hasty decisions. Your post will soon be answered by someone who can advise you further.

    I was diagnosed 18 months ago after reaching a crisis and being hospitalised.

    I was puts on Carbimazole, beta blockers, and steroids. My thyroid calmed down enough for me to be discharged after a few days, and I'm now medication free and much much better. I took the rest time to read up about Graves, and took a lot of sound advice from the members and administrators on this site, including what supplements would be helpful, and dietary advice.

    The administrators also advised me on my progress when I posted my monthly blood results, and have always been quick to reply with answers to any queries I may have.

    I'm now trying a natural protocol to keep my Graves markers down.

    Good luck with your progress.

    Arab. :-)

  • I also have Graves disease my level are always as my doctor says out of the park. I am on 8 thyroid pills and 6 beta blockers a day. My goiter has gone down my next step my doctor wants me to get radiation iodine done but not sure if I want to do it because then I won't be able to eat like I am now.

  • Please can you elaborate on the tips you use to stay in remission? Are you gluten free? What are you doing differently now? Thanks Alex

  • My questions are for arab,

  • Hi Alexkjones,

    I was diagnosed as having Graves only after 10 months due to Mild Thyroid Eye Disease being identified.

    When I first went into Hospital as an emergency admission, they were only looking at the Atrial fibrillation! The test for Graves wasn't done at that time, and it's only this Spring that the test for Graves markers was done, and came back negative, as I was euthyroid by that time.

    I went the Carbimazole route as there was no other option, given that by that time I was really ill.

    Now I'm no longer on prescribed medication, but I do see a Chinese Practitioner in Oxford, who has stabilised me with Traditional Chinese Herbs. I'm due this month to start reducing those as well, so that I'll be medication free by the Autumn.

    Alongside this, I have a clean diet - organic fresh veg, local good meat (very little red meat), no caffeine, sugary food - I used a little honey or Stevia occasionally, and recently I've bitten the bullet and gone wheat and gluten free. I'm very determined to control this as Graves is permanent once we have it.

    I feel sure that if I can keep the Graves markers low, that any flare up can be controlled without the need for medical intervention again.

    As for supplements, I read the posts on here long and hard, asked for advice- and got it, and then followed it!

    I take D3, B12 and a good multivitamin, Selenium, Magnesium, I'm currently trying to get my stored Iron levels up, so Iron as well, Boron, and all these taken with Vitamin C with Zinc!

    I'm also exploring the possibility of the Iodine route for future reference, and Lo! would you believe, most of the above vitamins and minerals are all required to be taken a month before commencing Iodine treatment.

    I could rattle on for ages, but I will say that without Thyriod UK I'd be floundering and very probably still quite unwell. The information here is something that I'd never have been given by my GP OR the endo nurse that I see!

    Education is the key to getting the best results for yourself!

    Hope this ramble has been helpful!

    All the best,


    PS. I forgot to say - I feel great! Back to the old me!! 😉

  • Great stuff thanks for the tips. I'm a biologist as well as a graves sufferer so am just trying to fully understand how this graves thing works and how I can make sure my remission attempt at the end of this year will have the best chance of success :)

  • Hi!

    I'm covering all bases! Funnily enough, I have always had a very positive attitude toward my illness, and feel that I will actually manage to get better!

    Good luck to you. If you run across anything successful please share!

    Arab. 😊

  • Glad you feel better. I've just been dealing with hyperthyroid for 2 months and I'm struggling emotionally as I have come off Carbimazole because of a slight inflammation so off all medication bar beta blockers until I am no longer toxic to start another medication. I was thinking about having RAI but endo said they'll put me on PTU. Just worried about the limbo period of being off medication and my thyroid levels rising.

  • Hi Smoking wax,

    There are some very interesting articles by Dr David Brownstein.

    Look him up, and I think there may be some on YouTube as well. There are other methods of dealing with this disease!

    Meanwhile, read all you can on here. This is where all my advice has come from - I've just basically done what has been recommended! Needless to say, it's the ONLY advice I've been given, as although my Doctor is very helpful, he wasn't very knowledgable about Graves, it's cause, and how to supplement to help stay well. The same with my endocrine nurse!

    Good luck. Things can get very much better!


  • Winter87 - I have Graves and was on medication for a long time but eventually I had RAI - the iodine treatment - in March of last year. Now I'm taking 50 mg of Levothyroxine a day and feel generally ok. I dithered for ages before deciding to have this treatment and it is a complicated and very personal decision. I do feel better now than I did when I was taking anti-thyroid medication, calmer and less tired. I am fatter though, which I mind about!

    All the best, whichever option you decide to go for.


  • usually they try medication for 2 yrs and then see what happens it may totally settle or like my husband will flare again and ultimately you may need surgery which will pretty rapidly put you hypothyroid and then reliant on thyroid medication for life

    you are right to totally reject RAI

    Going gluten free or lactose free may help

    its wise before you opt for surgery you get it checked for hashimotos

  • Hi Winter, I've got Graves, I started on carbimazole then thyroxine was added in ( my hospital treats with what is known as block and replace) I have asthma so I wasn't able to take beta blockers to calm the pounding heart - I just had to sit it out and wait for the carbimazole to kick in. I took carb and levo fir about 11 months until my results were where my endo wanted them to be - stopped everything the day after I spoke to my endo and waited to see what happened. At the moment I'm still in remission. I was told several times by every trainee endo I saw that should I relapse then it would be RAI for me! I told them every time that I did not want RAI, I wanted to continue on block and replace because once I got going on it I felt very well. In the end I went to my GP and discussed whether or not it was possible to refuse it and stick with the drug treatment - yes it was and no they couldn't refuse to treat me if I declined their offer of RAI. At that point I relaxed and got on with getting better.

    I just didn't want to kill of my thyroid unless it was my very last resort. Even if they remove or kill your thyroid off with radiation you still have graves - it just can't affect your thyroid. I was allowed to become hypo at the beginning when I was taking carbimazole alone and that was very unpleasant - Graves isn't fun but being hypo was really horrible in a different way and I just didn't fancy the idea that I would end up permanently under active and begging for enough thyroxine to keep me feeling well or even having to try and get T3 to try and keep well.

    my first question on here was 'will I ever feel normal again?' And yes, I do and you probably will too.

    If you are taking carb it is worth taking vitamin C with it - I used to take 1000mcg slow release with zinc every day. I also took CoQ10. Make sure your B12, ferritin, folates and vitamin D are towards the top of their ranges, that will help your thyroid too.😊

  • Should have added, read as much as you can about your condition. You will find a list of reading material in the Thyroid UK website.

    Keep notes of what is said at consultations and get and keep a copy of all of your test results.

    Don't take 'fine' 'good' 'within the range' as an answer when you ask your doctors what your test results are - you want to know exactly what each and every result is plus the range the lab has used.

    You want your levels to be optimal for your body - not just ok for someone else 😉

  • Hear hear Fruitandnutcase! 😊


  • Hi Winter

    I've had graves for 5 years and am on carbimazole. I've had one or two problems but reading on here I think I am one of the lucky ones. I came off the carb after a year but was back on again within months. I cut the dose down in January due to going hypo but I can honestly say most of the time I am fine. Hope you get sorted soon.

  • Thanks everyone. My b12 Is low. I keep getting told it's a bit low but nobody is willing to look into it further.

    I am really stuck in what to do and I'm angry this is happening to me even though there is so much worse illnesses I could have. I keep thinking it will all go away but obviously it won't

  • Winter, NHS consider anything within range to be normal. B12 supplements are available OTC so you can supplement to improve levels. If you say what your B12 level was we'll recommend what dose to supplement.

  • It's 165

  • Winter87, that's very low. Were you given a ref range (figures in brackets after the result)?

  • No. I've not really been given any info on it. I should call docs and arrange it but I've had enough now. Does anyone know what would happen if I decided to not treat it at all? And likely it is for anything to happen. Silly question I know

  • Mine was low - 327 (211 - 911) My endo was happy with that but as my mother had regular injections for pernicious anaemia (presumably because her B12 was low and had gone untreated) I wanted my B12 higher.

    I started taking Jarrows sublingual B12 methylcobalamin, I take the 5000mcg sublingual tablets. You just tuck one under your tongue every morning and leave it to dissolve.

    I have to say I'm taking a break for a while as my last test result was 1200!

You may also like...