What next?

My son was diagnosed with Graves Disease last January, aged 14, it seems he had been ill with it for about 1.5years but doctors didn't look for this as it is uncommon in someone so young.

He has now been on Carbimazole and Levothyroxin for about 18months and my concern is what's next?!

I've been told that you can't be on Carbimazole for more than 2 years and he is just due a check up with his specialist soon. He has just got his life back together, managed to scrape 3 GCSEs and started college. He looks well and is acting like a normal teenager (never thought I'd be so grateful of this!).

If they stop the Carbimazole what is the alternative? People have mentioned radiotherapy (?) or total removal of the gland. Is he too young for the latter and if so what else is there? He does not want to be 'zapped' so this is off the plan.

Any advice most gratefully received.................help! x

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10 Replies

  • I had a total thyroidectomy in 2006 and life on thyroid replacement medication has not been easy since. I found carbimazole hard to balance and was never offered the dual treatment used by your son. If he is doing well on it, I would be inclined to ask if he can stay longer than the two years. There are people on this site who have been on it for much longer. I hope they write to you with advice. My own advice is to keep a fully functioning thyroid for as long as possible and he may find that after a period on Carbimazole, his thyroid will have returned to normal. I believe there is a 50/50 chance. Do not be pushed into treatment that cannot be reversed, unless it is absolutely necessary. Good luck!

  • I first had Graves when I was 12, was on and off Carb for several years but could never stay in remission for very long so I had a partial thyroid op. My sister also had Graves a bit later in her teens and she had a total op.

    After my partial op I was fine, no meds needed, then Graves came back in my 40s and again it couldn't be controlled so I had RAI, went hypo straight away but now totally fine on Levo.

    I think you have to be guided by your Endo as to what they see for the future, he may be able to try for remission soon and you have to see what happens but if your son doesn't want RAI then possibly surgery is the way to go at some point if needed.

  • Thank you ith for your quick responses........but I thought you couldn't go on and off Carbimazole, thought it was a once only medication!? But from what you're saying he could go back on this if required? His Endo gave me the impression on our last visit that he would take my son off the meds this year and see if his body has fixed itself. I'm just concerned that at yet another crucial time in his life he may end up in a bad way again :(

  • after a year to 18months on carbimazole most people have "controlled" thyroid hormones and the drug is stopped. Approx 50% of people are cured but the other 50% develop an overactive thyroid again (recurrence) sometime in their life. there is no way currently of predicting which group someone will fall into. If it goes overactive for a second time most people are encouraged to chose a definitive treatment i.e. radioiodine or surgery.

  • My son was on methimazole which I think is the same drug as carb but he did go into remission. He was temporarily on a beta blocker as well. I know some people stay on it longer but he gradually drew down between two and three years from the start. He is still doing well after several years but I understand it can return. Some people are on propylthiouricil instead. I have never heard of the two year rule.

    You could peruse some of these links in the article: stopthethyroidmadness.com/h...

  • Hi Joobs,

    Glad your son is feeling better, it may help to look at his gut health, that can exacerbate antibody action with Graves. Does he eat a lot of wheat? May be bit of good insurance to see nutritionist that understands this and take up diet long term. I am using LowFod diet, lovely food in book and seems to make sense. I was on block and replace but now on up and down titration with blood tests every six weeks, given up wheat and caffeine... I know he's only 15 but beer might be a hassle in the future. Best of luck...tilly

  • Hi Tilly he does eat a lot of wheat.......noodles by the kilo!! Thankfully he doesn't like the taste of beer (so far) but does drink a lot of caffeine, which he feels helps to get him moving!

    I will start to look in to nutrition/diet as I feel he would prefer to use this than meds to help.........could you explain what 'up and down titration' is please?

    Thanks again all for your help x

  • This is an extract from an article by Dr Toft of the British Thyroid Association:-

    5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

    Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

    There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

    But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

    Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

    Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

  • Hi. I am glad your son is feeling so much better and acting like a normal teenager. May I ask you a couple of things about his recovery as my daughter been carb for four months and now levo. Her blood tests are satisfactory. BUT her symptoms have not all improved - ie, can't concentrate, low moods, can't sleep and anxiety attacks. Did your son experience similar after thyroid had been treated or did symptoms lessen with treatment. Thanks

  • It definitely took some time for the body to re-adjust to 'normal'. I have a vague recollection of going to the docs once to say he was still feeling bad, the docs response was his bloods are fine (not our usual doc), we chased again and there was something he had not looked at properly so they increased his levo. Sorry to be so vague! I would say he was 'better' after about 6 months and we are now into 18 months and the change in him makes me want to cry I'm so happy :)

    Persevere with docs and make sure you stick to one doc at your local surgery as they know all of the history.

    Read up on it, I've failed to do that because everything is ok and here I am panicking his life will be miserable again :/

    I hope your daughter feels better soon and I hope they find some way to truly fix this for all x

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