I have GRAVES, I had been on carbimazole for 18 months, at this time my T3, t4, and TSH.Were all in the mid normal range consultant took me off The meds and had blood test three months later.t3 and t4 shifted to high normal TSH O.03. endos now talking about next steps. Radio iodine or thyroidectomy. Have been a lucky one not to feel particularly ill throughout but initially lost six stone in six months. Weight has evened out. Life is good. My question: how many of you have been offered these two treatments and declined and then been allowed to stay on low dose of carbimazole. I haven’t taken a higher dose than 5mg per day for most of the last 12 months. After last blood test consultant wanted me to take 10mg per day. I know that this would make me under active. So am taking 5mg per day. Love to hear your stories.
Radio iodine/ thyroidectomy/ meds: I have GRAVES... - Thyroid UK
Radio iodine/ thyroidectomy/ meds
I was on 5mcg per day once I was stable or as stable as I could get. Came off twice but always went back up. I took RAI because the endo wasn't one that liked her patients on carbi forever and I never felt right so reckoned it was worth a shot. I don't regret having RAI as I don't think I would have ever felt right on carbi. BUT it has taken me 4 years of being underachieve to begin to think we might be getting somewhere on a combo of levo and t3. It is not an easy call to make so do what you feel is right for you.
I agree with laloot to do what feels right for you. For me it was to stay on long term low dose block and replace. Read all you can and trust your instincts.....and try to find a good Endo !
Hello Snottub
I'm with Graves Disease diagnosed 2003 and had RAI in 2005. I wasn't given a choice of treatment options and deeply regret this RAI treatment. I became very unwell about 8 years after the treatment and found no help or understanding with the various NHS departments to which I was referred, and ultimately referred to as a conundrum and offered anti depressants along with the Levothyroxine.
Living without a thyroid comes with it's own set of heath issues especially when you are unable to access the necessary thyroid hormone replacements on the NHS.
Thanks to this amazing site and couple of others sources I am now much improved but having to self medicate and buying my own full spectrum thyroid hormone replacement.
You have an autoimmune disease that attacks the thyroid and since the thyroid is such a major gland the symptoms experienced can be alarming, frightening and life threatening.
If at all possible I would suggest you stay on the AT medication at the lowest possible dose for as long as you possible can, to try and allow your body time to ride out this attack.
Should you have to loose your thyroid I believe surgery is the better option, as it is cleaner and more contained, though fully understand that nobody would choose to have their throat slit open.
RAI is a quick fix as it is dealt with in out patients and you simply swallow down a liquid or take a pill, and is generally the hospital's treatment of choice because of the simplicity and speed with which the out patient is discharged back out into primary care.
RAI is a toxic substance that slowly burns out your thyroid is situ.
RAI is known to be taken up by other glands and organs within the body.
It is known that some people may after RAI develop thyroid eye disease, and if you have any issues with your eyes, it shouldn't even be considered as an appropriate treatment option.
Hypothyroidism caused by RAI is more difficult to treat.
RAI is known to cause fibromyalgia type symptoms.
Please do your research :- you might like to read Professor Toft's 2017 article that is on this website in full - Thyroid Hormone Replacement - A Counterblast to Guidelines - in which he writes :-
" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 131 or surgery in patients with Graves' Disease irrespective of age or number of recurrences of hyperthyroidism " .
There I also the Elaine Moore Foundation in the States. This lady has the disease and went through RAI back in the 1990's. She found no help with her situation so wrote a book to help others who might be in the same situation. She is a medical researcher and her website is well researched and covers all aspects of this auto immune disease including diet and life style, alternative and holistic approaches and all aspects of the disease that currently remain much of a mystery by the mainstream NHS.
It is an excellent adjunct to this amazing forum. There is an open forum, much like this where people ask questions and get answers from the community as well as from Elaine Moore herself, when necessary.
After reading all this. I had rai done in 2006 by a gp then went hypothyroidism..i had no idea the thyroid was important then...if i new then what i know now i would have got a second opinion i had to fight and struggle for armour thyroid instead of t4 only..they never gave me the option to be on meds for hyper...i was never diagnosed with hashi or graves...so i have no idea what condition i have or just hypothyroidism
Hello Netty
I can understand your confusion and upset in all this.
I too never understood how serious the situation was as my symptoms were not too bad and the Carbimazole quickly resolved the insomnia, dry gritty eyes and exhaustion and I returned to work.
In all honesty nothing was explained to me and I wasn't given any treatment options, and with hindsight believe my age then 56 decided my fate and the treatment with RAI.
I was told I had Graves Disease, and accepted everything I was told and I was totally compliant, as I believed the doctor knew what was the best course of action for me.
I am sure there are many of us who have similar feelings, but all we can do now is try and be the best we can be and that probably means we have to become our own best advocates as to our treatment requirements, and pay for our own medications.
I owe a lot to this amazing website and am now getting back on track as best I can, and that is why I come on and try and give back what I have learnt so that I may help another person who is ill, feeling vulnerable and trying to understand this poorly understood and badly treated auto immune disease.
Ultimately if you have had RAI your thyroid has been slowly burnt out in situ rendering it ineffectual, basically dead. This in turn renders you hypothyroid and requiring thyroid hormone replacement for the rest of your life.
I believe you entitled to see your medical records if this concerns you, and you could ask what were you diagnosed with initially or ask for full disclosure of your medical records and read up for yourself all that has been actioned.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 3 and that is the rough guideline I have used in my self medicating journey.
Funnily enough I have ended up on 1 + 1/2 Thyroid S NDT and that works out at 57 T4 + 13.5 T3 and allowing for T3 being approximately 4 times more powerful than T4 if you expand that out you get 57 + 54 (13.5 T3 x 4 ) = 111 :
I'm a work in progress, I also take adrenal support and various other vitamins and minerals, but am much improved to when I first came on this site some 4 years ago.
Thank you so much for your advice
You have important life-changing decisions to make. Personally I had no choice except surgery for aggressive multinodular goitre. I consider now that I was given totally insufficient information when offered RAI for ablation of remainder of remains of thyroid gland. You need to be aware that ALL doctors registered with the GMC are obliged to inform all patients of any treatment that they believe may possibly improve their lot IRRESPECTIVE of whether they are permitted to prescribe them.
The radiologist FAILED to inform me of any problems whatsoever with the long term effects of RAI but I now believe that this actually DID cause me problems that I am only now, 15 years later, finding out about. Switched to NDT some years ago.
No responsible surgeon would recommend surgery when anything else is available. It is a dangerous operation. I had 3 thyroid ops and was lucky to survive the experience. I was even luckier to survive my nephrectomy according to the notes the surgeon gave me the following day. He had to call in the "emergency squad" to stop the bleeding.
My advice - avoid surgery and RAI as long as possible until the only alternative is worse.
Bless you and thankyou
I’ve stayed on Carbi longer term (first diagnosed 2012). I’ve come off it twice and relapsed twice, so this time my (new) Endo is keeping me on a low dose twice a week even though I’m technically in antibody remission. He says not to make any decisions about coming off it until after menopause as that can mess you up again (I’m 48). My previous Endo wanted me to do RAI or TT but it never sat right with me, but he did in fairness tolerate my wishes to stay on Carbi.
I was on and off carbimazole for 12 years and felt pretty well most of the time then endo advised I have Rai as i kept relapsing and she felt I should not be on carbimazole long term so took her advice as thought she would know best it was the biggest mistake of my life never been well since but having found this forum a few years ago now have learnt so much from these wonderful people and managed to fight to get t3 I've been much better the last 18 months. My advice is stay on carbimazole treatment regimen for as long as you can cause once they kill your thyroid there's no going back. Don't be bullied by endo do lots of research and make up your own mind what's right for you.
Wishing you good health.
Thankyou and good luck to you
I also regret Having RAI for Graves. I felt great on block and replace with Carbimazole. But as I also kept relapsing I was persuaded to go for it. It has taken me several years to try to feel as good afterwards. I am having to get my T3 from Germany to feel well using a private prescription from my GP. I worry going forward when my GP retires
and post brexit supply might get harder what battles I will face in the future to try to get my meds. I would stay on Carbimazole as you can get that through the NHS.
I can’t find any research on detrimental affects on being on Carbimazole. If you refuse RAI then Endo can’t refuse to prescribe it.
Good luck
Graves disease
Graves disease
Am i being over medicated? 
Free T3 results when taking T3 only and when to take last dose before test
