Hi, I am 20 years of age and I suffer from Hyperthyroidism. I had this roughly 3 years ago, however, after being on treatment (carbimazole and levothyroxine) for 18months my hyperthyroidism has relapsed.
As a result, doctors are now asking me what I would like to do; continue with medication, start radioiodine or opt for the operation.
What does everyone recommend ? Please and thank you!!
This is an answer by Dr Toft ex President of the British Thyroid Association. If you need the whole Pulse online article which covers aspects of thyroid gland problems, email louise.warvill@thyroiduk.org.
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.
Ideally, I would hate to become under-active and develop hypothyroidism! So, I was wondering whether you would be able to give me the pros and cons of staying on medication?! Thank you
Hi Laus
I am not medically qualified so am not able to advise. I hope some others, like greenginger, will have some sound advice.
It is good to read and learn as much as possible about your condition.
I don't know if this link will help.
Hi you are young to have this awful thing (I am 43 and have it) and statistics are against you when it comes to you going into remission again and staying there.
It would be fair to say that the only 3 options available to you would be
1. Surgery - causing hypothyroidism
2. RAI - also causing hypothyroidism
3. Stay on carbimazole.
My endo stated that at 43 I was too young to stay on carb long term due to possible complications long term, especially with heart problems. They will prescribe it long term for the elderly though. You are very young though so I do not think it is a real long term solution.
The other two options will make you underactive for life and have other problems as discussed on here.
It may be that you are lucky and use carbimazole again and then go into remission but if I were you I would begin considering the other possibilities available to you just in case. Do read up on RAI and /or surgery and take into account things like thyroid eye disease and if you are a smoker or not and so on.
I am due to come off 2 years worth of carbimazole and will most likely face a similar choice in the future as you are now doing. All the best and good luck.
May I ask exactly what your Endo means about possible heart problems? I have done a lot of research on Carbimazole and never seen that side effect mentioned, only liver, white cell count and a few more minor things.
Hey if I ever get another appointment as the latest is 3 months overdue, I will be sure to ask and let you know!!!
It was something that I have been told by several endo's but I did not question it at the time.
I have also read something somwhere but can't think where. Let me get back to you.
Thank you Greenginger 
I must say that after reading through this forum I should really be quite happy with my Endo, considering what you and others go through with unhelpful ones! I wonder why they go into medicine?!
Thank you, I shall look into the different treatments fully before making a decision! Good luck to you too, and thank you again!
Hello Greeginger,
I never heard of heart problems with long term use of Carbimazole if the dose is very low - at or below 5mg. Could you be more specific?
I'm 42, my TSH is going up and T4 going down with only 5mg - I'm at T4 15 and TSH 2.2 after 4 months of treatment. My endo thinks I can be cured but is thinking about a potential relapse too when stopping the treatment but would like to keep me on Carbi for years, which is a relief as becoming hypo is pretty scary for me: I have a natural resting heart beat at 55, when I was hyper I never went over 100, I'd be scared to go bracycardia if hypo.
Thanks a lot! Nathalie
Hi
I am also on 5mg but after 2 years have decided to cut it to 1 tablet every 2 days. This is due to infrequent endo appointments and the fact that my TSH was in my opinion getting too high thus causing hypo symptoms.
All of my endos and I have seen a few, have mentioned the negatives of long term use of carbimazole in young and youngish patients. I am 43 and classed as young. I think they mean pre menopausal in age.
I am overdue at the endos and will query it when I re attend and post the update on here.
I too worry about relapsing but everything I have read suggests that it is usually only given for 12 - 18 months in the first instance. As I am at the 2 year point my endo wants me to think on my options should I become hyper again as statistics show that carbimazole is unlikely to work on second and subsequent flare ups.
I am sure that if you were hypo there are meds to help with the brachycardia.
BTW your numbers look pretty good compared with mine as I cannot get my T4 over 12.
I remember that your TSH was around 4, which I agree is too high. In France, a TSH over 3-3.5 is considered hypo.
My T4 went down to 13 during the 4 weeks I was at 10mg, they picked-up when I was cut to 5mg and have stayed stable since then.
There is someone on this forum that took carbi again after a relapse. I think it's an option. It's too early for me to think about my options as I'm only at 7 months of treatment. Carbi can be given for 6 months only for certain type of Graves.
Maybe you should try 2.5mg for a while and see what happens. You may be simply cured and won't relapse :-))) At what dose did you start? And how high were your T4 when you were diagnosed? Mine were at 34 - range 9-19. It was qualified as a mild hyperthyroidism.
I think mine was similar levels 30 or 40's for the T4 but my TSH was really low. I have been on carb for 2 years and have been on 1 tablet of 5mg every two days for the last month and feel a bit better. I have been on 5mg for a year and originally started on 40mg then 20mg then 10mg.
It is my T4 that wont rise now though, it remains below 12.
Thanks Ginger. My TSH was suppressed when I was diagnosed. My endo thinks I'm going to stay on 5mg for 1 or 2 months max. and cut to 2.5mg.
That's why I needed your numbers: everything is going very fast for me and I may have to choose my options in 5-6 months, after 12-15 months of treatment. I thought we could take Carbi again in case of relapse: do you have any links about this issue?
My endo said that carbimazole works in 65% of cases in the first instance of hyperactivity. Even if this is short lived. This falls down massively on subsequent attempts. I have been asking around on here and only one person has replied to having gone into remission and staying hyper or hypo free without treatment either meds, surgery or RAI.
Not the best odds is it?
My endo said that carbi works in 20-30% of cases in the first instance. My odds are worse than yours 
This is very confusing but I was thinking about it tonight and I'll turn down RAI and surgery when time comes. I have no carbi side effects, it works with a very low dose for me. Maybe after 6 or 7 years, I'll change my mind but getting rid of an organ is not a decision to be taken without trying carbi as long as possible.
Hi yes to clarify the 65% I quoted also cover short tern thyroiditis ie postpartum. You are correct that only 30% of long term hyperthyroidism sufferers go into remission with carbimazole. I looked up the figures for carbimazole being used a second time and it is quoted as only successful for 8-10% of second time users.
I don't really have any major side effects such as itching but I do have issues such as thin hair and weight gain with the Graves.
Having done more research there are links to heart problems but it is all very vague however liver problems are a big issue as is a suppressed immune system.
I guess sometimes its better the devil you know.....
People of this board do not represent all people being hyper. If I go into remission, I'll simply never come back here and move one with my life. Maybe that's why you had only one reply.
There are quite a lot of ex hypers on here and I do speak to a few. Some have become hypo either through RAI or surgery or some naturally have moved from being hyper to hypo. This does happen sometimes as the thyroid burns out. That is another reason why carbimazole may not be along term solution.
Those same people often do come back to give advice or in turn ask advice about being hypo.
I recently spoke to one lady who has just come off carb after a couple of years and she had been doing well and thought remission was a given. She is already having problems after just a few weeks.
Good luck whatever happens and if you want to stay on carb I hope it works for you. I hope we all get better.
We'll see in a few months. My endo is optimistic and thinks I may be in the 20-30%... so I'm staying optimistic.
About hair thinning, you should use Cystine lotion, it's a French stuff It completely stopped my hair from thinning: natural-herbsmarket.co.uk/p...
As for gain weight, I haven't gain weight for now. Your TSH is way too high and your T4 too low. I think you really should use 2.5mg and I'm sure you're going to feel a lot better. At 15 and TSH at 2.2, I'm full of energy, not depressed at all and... optimistic
i ve just seen my endo was diagnosed with graves feb 2012 and have been on carbimazol and now ptu i asked him what the treatments were and he said medication rai or removal
i said how long can i stay on medication if i don t want rai or op and he said 10 20 years!
im 49
think it depends on how you feel and your endo
i m pleased and will monitor my white cell count and liver function tests and stay on meds til i hope i go into remission
good luck in whatever you decide
hotfeet
Thank you, and good luck to you too!
Ive been on the same treatment as you and after 18 months i think my thyroid is startng to show signs of bieng underactive.I wont choose RAI or surgery and have always told my endo i would go back on tablets again.He didnt like that one bit but i'm going to stick to what i believe is right.once you have RAI or an op then there is no going back.
I would only have surgery as a last result.Good luck on your decision.
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