As I found this thread 6 years after it was posted, I'm adding to it with some current information, for anyone whom might stumble upon it like I did.
My youngest daughter was diagnosed with Grave's Disease in April 2015. We had suffered 3 deaths (my daughter's Great grandmother, Granddad, Great Uncle and one massive heart attack from her Uncle all within 3 months of each other, this all happened by the end of April 2014. The Drs told us it was probably the shock of everything that kick started the Hyperthyroidism.
My daughter's symptoms started with terrible shakes that meant she struggled to walk down a set of stairs without her legs almost giving way, they thought that it was a neurological problem, but then she started to lose weight rapidly. At 15 years old, we thought this was due to puberty and not really worried about it, but by the time the summer holidays had started in late July, she had gone from a size 18 to a size 12. We went out and bought lots of outfits for college after the summer break, (the sales were on) and we kitted her out with a full wardrobe. This wasn't easy, as she started feeling super tired, sweating profusely and having panic attacks whilst out shopping and in changing rooms, this was very strange.
By the time summer break was over nothing fitted her, she had dropped 2 more dress sizes to a size 8, we had to rush out and buy more outfits... Now she's in college and the panic attacks and anxiety are getting worse, she can no longer tolerate being around large groups of people, and she's sweating quite a lot because she feels super hot all the time. By the time we get to the following April (2015) she's now almost completely withdrawn from any social situation, she can't stay awake, even in class, and I notice that she's twitching a lot in her sleep.
Then one day I spot her jugular vein pounding in her sleep, when I take her pulse it's 122 beats per minute, and this continues 24 hours per day. I immediately take her to the Drs, where she is diagnosed with Hyperthyroidism, but it has to be confirmed with 2 blood tests, the first one to find out if the Dr is correct, and the second one has to confirm it.
It's now May 2015, and we have a diagnosis of Thyrotoxicosis, but no idea what's causing it. My daughter was immediately put on 40mg Propanolol, and 10mg Carbimazole once per day. When she saw the Endocrinologist in September 2015, he increased the Carbimazole immediately to 20mg per day because of how ill she was, and then he spoke to the Consultant Endocrinologist whom put her dose up to 80mg Carbimazole per day (40mg twice a day). By the time we got to April 2016, her carbimazole was increased to 60mg per day 30mg twice per day), they were also discussing the possibility of surgery or radioactive iodine treatment in the future, as she was diagnosed with Grave's Disease.
My daughter was by June 2016 on 60mg Carbimazole once per day (morning only, and her Propanolol was increased to 120mg per day (40mg 3 times per day). Propanolol was stopped in December 2016, but by the end of January she was back on it 3 times a day.
By the time we reached July 2017 my daughter had been on 60mg Carbimazole for 1 year 8 months, at this point it finally dropped to 40mg per day, and Propanolol was only required when necessary, then in July 2018 (1 year later) the Carbimazole was finally dropped to 25mg. By January 2020 it finally dropped again to 15mg per day.
It has been a very long journey, and initially my daughter was taking her medication regularly but the Drs wouldn't believe us, then the effects of a high dose of carbimazole kicked in, mainly memory issues, and then she did start to forget doses, and admitted it to them, they took this as she never had complied, extremely annoying.
They pushed heavily for surgery or radioactive iodine, but we stood our ground of staying on the Carbimazole because we felt she was too young to go on medication for life. We're glad we stuck to it, and we're hoping she'll be off carbimazole all together within the next couple of years.
My daughter's original start weight was 11 stone and a size 16/18, when Hyperthyroidism got hold of her she went down to just 7 stone 10lb and was a loose size 8, not quite a size 6, in just 6 months, it took just 6 weeks to go down 2 dress sizes towards the end of her weight loss, she looked very unwell.
Now she has regained more weight than she started with, she's a size 18 and weighs 14 stone 8.5Ib, she's only 5 foot 3 inches, she hates it, but is glad her health is getting back to normal. The weight can always be shed again at a later point when the carbimazole stops.
Tiredness, chest pains, sore joints etcetera have become an issue, but we feel it's probably weight related. Hyperthyroidism is not a nice condition to live with, and it can take years to recover from. My advice would be to go with your gut, if you want to hold out rather than go straight into surgery etcetera, please do as you think fit. We saw so many different Endocrinologists, and they all had a very different opinion on how to deal with the condition. Don't think you have to take the first persons advice. My advice is, take all medication exactly as told to, don't miss doses, even if you have to set an alarm, medication will work for most people, but it must be followed strictly, and this is easier if you're on it for less time.
My daughter had to sit GCSEs, A levels and a university Degree with Honours, all whilst suffering with terrible memory problems due to the Carbimazole. I am very proud of her...
Good luck to anyone suffering with any thyroid condition, my heart goes out to you...