I'm hypo after Radioactive Iodine treatment (a few years ago now) I guess what I'm asking is do I still have Graves? Or has it gone now I'm not longer hyper? And if I do still have Graves is there something I should be looking out for?/doing?
Many thanks
Icescream99,
It's not a silly question. Graves doesn't go away when you stop being hyper. If you're lucky it will become dormant and won't trouble you. If you are unlucky it may go on to attack your eyes (thyroid eye disease) or shins (pretibial myxoedema) and in extreme cases may attack other organs such as the kidneys.
I don't think there is anything you can do. Some people think adopting 100% gluten-free diet can help reduce antibodies in patients with autoimmune diseases but it's unlikely your doctors will retest to check whether it is benefitting you.
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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Hi - thanks Clutter, thanks for explaining this, the more I read, the more I'm realising that there is so much more to it. 
Icescream99,
I only our doctors thought the same way 
Exactly! As I was told
today when I phoned the surgery to query my results - the clinician is right 🙈
Icescream99,
Well they may THINK they're always right but that's really just wishful thinking!
I also thought graves went when thyroid stable, out of interest were you told about graves disease, I only found out I had it by letter from endc and was never given any information about graves. Now having b12 injections for life.
Hiya ...similar to you ...Graves was mentioned in a consultant letter way back when I was first hyper, they usually refer to it as autoimmune now (if at all) I was terrified when I first read 'Graves' - it was never explained to me 
Can't believe how they don't tell you about disease, lucky we've got this site, so much to learn.
I know! Finding this site is a godsend X
Hi there, I also had RAI for Graves, my belief is that Graves doesn't go away as it is an autoimmune disorder. The RAI decreases the amount of thyroid hormones released by the thyroid in response to TSH from the pituitary gland. I had RAI 8 months ago and have not gone hypo, however my levels were raised last test, so I may still be slightly hyper...see endo again at the end of month. I had inactive TED and this has not been affected. After several years I assume you are now life long hypo?
Hi, I went hyper at first and for some time after the RAI the endo seemed to think it may not have been successful - it took over a year to go hypo (or be diagnosed as hypo) now though I seem to be going more and more hypo as time goes on. As far as I'm aware that's it now, hypo for good. I wonder if this will be the same with you or whethere you'll end up needing futher RAI? Nothing is straight forward with the thyroid it seems
Glad I found this as I have often wondered what happens to those antibodies post RAI. I was told I don't have Grave's any more as they've zapped my thyroid but am I right in thinking that the over active thyroid was just one of the things that Grave's does to you? I see someone posted on here this morning that they had had a thyroidectomy and now been diagnosed with Grave's. That sort of goes agains what my endo told me as once no thyroid function, no Graves according to him.
Hiya ...it seems that there is little or no information shared/explained to those of us with Graves (if mentioned at all!) I've got an appointment with an endo in October - am going to sound him out on the in's and out's and see what he says!
Look forward to hearing what he says. My endo passed me back to the care of my GP and then I got moved over to a new doctor as he had no one on his list and all I get now is a yearly TSH. I even had to ask for that. if your are diabetic you get check ups. As an asthmatic I get a yearly check up for that so why don't we thyroid sufferers have one?
I saw a new endo last month who said I have autoimmune disease which is controlled after TSH receptor antibodies were positive with my last blood test. Ironically I was feeling well by the time I got to see him on the NHS only waited 4 months! Didn't get an appointment with a previous referral to another hospital! Think once you have Graves' disease you never lose it? Is that right?
This thyroid disease is far more complicated than I ever realised and the doctors don't tell you a lot. I have had it since I was 14 and I'm 63 now!! Mine is hypo since I had RAI in 2012 after being hyper for so long on and off and I certainly don't think it was the answer I was told it would be. Didn't know this site existed when I was considering RAI and I don't feel it was the answer for me I just feel like it's all more and more complicated.
Had a copy of the letter the new endo has sent to my GP after my appointment last month saying I am completely euthyroid can someone explain that please?
Thank you to you all on here so grateful for any help
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