Hello all,
I have been offered 2 treatments options, surgery or the radioactive iodine tablet. I have been diagnosed with Graves. I just wondered if anyone had taken the radioactive iodine and could give me any info? Any side effects? Did it work? Thanks Alicia 😊
I had it some years ago after 30 odd years with Graves, no side effects other than tiredness when I went hypo which happened within 6 weeks, I've been very well on Levo since.
I'm rather surprised that you've been offered RAI or surgery so quickly after your diagnosis. Has it only been three months? Has anyone tried you on carbimazole which is the standard thyroid-suppressing drug given to people with hyperthyroidism in the UK? A trial of only three months is much too short before deciding to either have your thyroid removed or your thyroid killed off with RAI (in my opinion). You really should try and hang on to your thyroid - being hypothyroid is no fun at all.
Fruitandnutcase has Graves' Disease but has managed to bring it into remission with drugs. As far as I can remember she no longer needs treatment and still has her thyroid, and is hoping that her remission is very long-term!
A good friend's health has been ruined further by RAI treatment as she was refused the option of surgery. The "partial" dose she was given has left her with permanent throat, stomach & abdominal pain, & she feels far worse for being hyothyroid than she did with Graves. She was also diagnosed with low B12 soon afterwards, PA seemingly another chronic health issue that developed immediately following the RAI. The people I know who have had full or partial thyroidectomies seem to be undertreated with regard to thyroid hormones, but none have the additional health issues following their surgery.
I know you've been asked this before, but have you had thyroid antibodies checked for Graves' Disease and/or Hashimoto's Thyroiditis? What were the results?
elaine-moore.com/Articles/G...
labtestsonline.org.uk/under...
Killing off or removing your thyroid is something that shouldn't be done unless it is a last resort and all other options to bring your thyroid under control have failed.
This is complicated. I've not had Graves' but my best guess was to opt for 1. Drug treatment 2. surgery and 3. RAI. However, I recently saw a presentation that showed that RAI and surgery are much more likely to succeed if done early. So, in my inexpert opinion I would opt for drugs if they seem to be working and your TRAb (Graves' antibodies) are not very high. I guess this just makes it more difficult to decide but these are the facts as I know them. If your fT3, fT4 levels are not yet under control I would personally opt for surgery, especially if your TSH is still very low.
Hello Alicia,
I have Graves and had a toxic multinodular goiter - I am 13 weeks post op TT. I was offered first RAI , which I turned down because my goiter was too big and it would not have sufficiently reduced in size. As well, it was growing rapidly and the surgery decision was the best for me based on several endo opinions.
What I can tell you is this - based on the available research , if you have RAI and then you need surgery down the road, your results will be much worse than if you had surgery right away. Another thing to consider - the time to recover from RAI is much longer because the time it takes your thyroid to die ranges from 3 months to 3 years. It’s a slow kill. Surgery is more immediate in its results. In that time, you will need numerous medication adjustments. You will need meds adjustments with surgery as well, but you are not competing with a thyroid still producing thyroxine. You may also need two rounds of RAI if the first one does not completely kill off the tissue.
In retrospect, while I wish I still had my thyroid, it wasn’t optional for me - and I am relieved I had the surgery. The choices for Graves are not great ones - because neither is optimal.
My own experience is not right for everyone and I would not be so bold as to tell you what you should do.
Questions - have you had a biopsy? How is your blood work? Are you on carbimazole? Is it helping? Do you have a large goiter? Do you have nodules and are any of them potentially cancerous? Are your symptoms under control? Have you been in remission if you were on carbimazole?
These are questions you need to address before any decision can be made so that you feel confident about what you decide. Send more info and I’ll be happy to take a look at it if you think it will help you.
I wish you the very best of luck and know this is a tough choice to make. Sending you positive thoughts and good wishes.
Thank you, that is very helpful. 
Just seen humanbean’s post this morning.
Yes, I was eventually diagnosed with Graves in November 2012. To cut a long story a bit shorter I started straight away on carbimazole and saw an endo after three months. At that point i was given levo to take along with the carbimazole, I was taking 40mcg carb and ever increas8ng amounts of levothyroxine until I was taking the 40mcg carb and 100mcg levo. A year later in November 2013 I stopped the lot. Just like that and I’ve been in remission ever since.
I had been told at my last three consultations that should my remission not last I would be given RAI which I did not want on the grounds that you will still have Graves - year u just dot have a thyroid for it to attack, plus I had become hypo before I was started on levo and although I didn’t feel as bad as when I was hyper, hypo feels pretty awful too.
I went to see my GP and said I was worried about be8ng given RAI and what would happen if I refused it and said I wanted to carry on with my block and replace treatment. She said ‘Nothing’. Could they refuse to treat me and she said ‘No’ so I went off home and haven’t looked back.
I went totally gluten free for another reason (inflammatory arthritis) and I noticed that my thyroid antibodies plummeted, my IBS also improved no end. The thyroid antibodies may have reduced by themselves who knows but I’m not going to go back to eating gluten. I try to eat a good healthy diet, d9nt have junk food or fizzy drinks, I exercise and do Pilates too.
If the OP is young I would want to hang on to my thyroid for as long as I could in view if the research being done in the U.K. at present for a vaccination. apitope.com/apitope-announc...
In the meantime OP I would make sure that your vitamins D and B12, ferritin and folate are all well up in their ranges and when I started on the carbimazole my pharmacist told me to take a high dose vitamin C along with the carb which I always did 1000mcg slow release vitamin C with zinc.
If I were you I wouldn’t want RAI so soon but that’s just me like bantam12 says she has been very well for the last 30 years. Good luck with it all.
I had RAI in 2016. Regret it every day. My life has been hell ever since !!!
Hello, I am so sorry to hear that. Would you mind sharing why? If not, I totally understand. x
Hi sorry for delay replying
Before I had RAI, I only dealt with weight loss until I was given carbimozole, hair like straw and peeling feet. I had to take a beta blocker to slow my heart rate down but that was all. The Endo said it would be great it would sort everything out and one tablet would be all I needed. So on her advise I had it. Felt great for about 8 weeks after, then my thyroid gland died, four stone piled on my hair falls out my skin is dry eyes are dry and sore can’t sleep but mega tired every joint hurts muscles burn I can no longer have gluten or lactose I have tinnitus in both ears I suffer balance issues. Some days I don’t even make it out of bed. I can sleep for 24 hours straight and 3 years after the RAI I cannot lose the weight. You will get T4 from the NHS but not T3 The endocrinologist takes you from hyper to hypo and then slams the door in your face. Sorry to sound glum and angry. I regret it and if I knew now what it would be like I would never have had it done.
If I can be of any more help let me know
X
Hello Alicia
I have Graves Disease diagnosed 2003 and treated with RAI in 2005. I was hypothyroid pretty soon after this treatment and was on monotherapy with Levothyroxine and monitored on TSH blood test results.
In about 2013 I became increasing unwell and found myself in an ever decreasing circle of wellness, a fuller account can be found on my profile page.
RAI maybe recommended as the hospitals treatment of choice but it is not necessarily in the patients best interests. It is the treatment of choice as it is the cheapest option, a 20 minute outpatient appointment and a discharge back out into primary care.
Graves Disease is not a thyroid disorder, it is an auto immune disorder that affects your thyroid. However RAI is a permanent solution aiming to destroy your thyroid and there is no way back, it's irreversible.
RAI is dangerous for breastfeeding and pregnancy. RAI is known to affect the ovaries and currently it is not recommended to conceive 8-12 months after iodine treatment.
RAI treatment will cause a permanent hypothyroidism condition. Radiation- induced hypothyroidism is more difficult to treat than naturally occurring hypothyroidism.
Hypothyroidism caused by irradiation is known to cause depression and anxiety.
In one large Dutch study over one third of patients with a full time job were unable to resume the same work after treatment.
RAI doesn't stop the thyroid anti body production so chances of thyroid eye disease may become worse after ingesting the RAI.
RAI ( also known as nuclear waste ) is absorbed by other organs and can cause cell death or DNA mutations. RAI is absorbed in smaller amounts by other organs besides the thyroid including the breast tissue, the genitals, pancreas, and the gastric mucosa.
Sicca syndrome similar to Sjogrens Syndrome may occur in Graves patients following RAI.
Besides the thyroid gland RAI is taken up by the gonads, gastric, parathyroid, salivary, pituitary and adrenal glands and skeletal muscle.
Living without a fully functioning working thyroid comes with it's own set of issues especially when one is not able to access the appropriate thyroid hormone replacements.
If nothing else, please consider Professor Toft's article :-
Thyroid Hormone Replacement - A Counterblast to Guidelines - it's on this website somewhere, maybe somebody will be kind enough to resurrect it for me -( I promise I'll get some lessons on how to do it myself at some point in time ) -
in which he writes, amongst other things -
" 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 1-131 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism. "
My symptoms of hyperthyroidism were nothing like as bad as what I have been through these past few years. I do not know why this has happened to me as no NHS department has actually helped me with the debilitating symptoms I have been living with, there has been no accountability and my doctor referred to me as a conundrum.
I do accept that I was too ill to fight the system long term and since Graves is exacerbated by stress and anxiety, thought it best to try and sort myself out, and thanks to this amazing site, I'm now doing ok and self medicating, having to buy my own hormone replacement.
I also read that RAI is a very popular treatment, thousands of people, as I understand things, take the little tablet and are perfectly ok. ?
I also read that this treatment is considered barbaric through parts of Europe and the Far East.
You might like to take a look at Elaine Moore's website on all things Graves Disease.This lady has the disease and back in the late 1990's. found no help after having RAI. So she ended up writing a book to help others learn about everything Graves.
It is stateside so medical protocol slightly different but it is a well respected, researched platform which along with this site has helped me to understand better what Graves Disease is all about, and it's not the thyroid, since the thyroid is the victim of an attack from your anti bodies, and it's the anti bodies we should be looking to reduce.
I believe there is a vaccine for Graves being developed.
I read that there are people who have found remission and on no medication, and well.
I read of people on anti thyroid medication for years, rather than only the 15 month time schedule I was allowed before being " nuked ".
Sorry, I've gone on quite a bit, but I think it all relevant, though a bit too close to home for me not to get a bit emotional.
I felt that RAI was mainly for the consultant’s benefit, it gets you off their books and send you off to your GP who may or may not know anything much about treating you and may or may not be prepared to give yu the meds you needed to make you well.
The last trainee endo I saw actually held up her thumb and finger to show me how little the pill was that I would be given, when I said that I didn’t want to take the chance of becoming hypo she actually said I wouldn’t become hypo! It was because of that that I took myself to my GP to find out what would happen if I refused to play ball and have their RAI.
Roll on the Graves vaccine - it seems the trials are hopeful which is terrific news.
I can see exactly why you feel emotional about it all - it’s almost like many endocrinologists are the dinosaurs of the medical world.
Thyroid patients are often treated badly and many are kept feeling ill - ok we mainly hear about the truly miserable, stressed and anxious patients on this site - but it often seems that it would be easier getting blood out of stone than getting that getting your thyroid to it’s optimal place within ‘the range’ - how I utterly hate that range!
T2 diabetic patients are urged to eat carbs when excellent results have been obtained by adopting a low carb, high fat diet, yet most people I know are encouraged to stick with carbs for every meal.
I’m glad to hear you are self medicating and doing well and yes this is an amazing site, amazing people who are taking responsibility for their health into their own hands. So many people are so grateful to have found it. I know, I’m one of them.
Hey there Fruitandnutcase,
Yes, I think you've pretty much summed it up, and it's just a pity I've had to learn about my disease and of the treatment options, after the event.
I simply trusted the doctors, believing they knew best. I've past the phase of trying to apportion blame, but would just like some explanation and acknowledgement of my situation.
I'm so grateful to this site, I have learnt so much, but sadly this empowerment has resulted in my having to self medicate, and become even more disappointed and disillusioned in the Nhs.
Going by your name, do I presume chocolate helps those anti bodies ???
Take good care xx
Much as I adored fruit and nut I have now moved on to just an odd square of 80% dark chocolate.
I always despair when I speak to people who are really ill and yet faithfully believe everything their doctor says. No idea of what their test results are etc.
I’m not saying we should all distrust our doctors just for the sake of it but we do need to research our conditions and take an active part in our own treatment.
You’re right - this site is absolutely amazing
Well, in my defence I have dyslexia and picking up a book for pleasure, let alone a medical book was not on my radar back in 2003.
I think I did what most people do, I wasn't well and I went to the doctor for help as he knows more than I do and has studied medicine and made this his profession.
I was wanting relief of symptoms so I could get back to work and pay my rent.
I think what concerns me most is that I was never told about Graves Disease or given any treatment options. At age 56/57 I was tick boxed RAI and given a BTA leaflet that was far too economical with the truth, and assuring me that RAI was a completely safe treatment for Graves Disease and I would then be " better ".
I believe there is more information, more easily available in this day and age, but it beggars belief that we still need to try and educate the medical professionals on our health and invariably feel like we are hitting our heads against a brick wall.
Thanks to this site I am now very confident in my own space and self medicating.
I'm a work in progress, but not confident enough to " enter the ring to fight my corner " against the guidelines for thyroid treatment in the mainstream NHS.
I was diagnosed overactive thyroid in 2011 when I saw a wonderful Consultant who sat opposite and explained fully what this meant and I was given Carbimazole and have been fortunate in that I have had no nasty side effects like many others have experienced.
Sadly the wonderful Consultant left and I was monitored by arrogant bullying Registrars who both told me in no uncertain terms that I should take the RAI pill to kill off my thyroid gland "Just take a tablet daily afterwards and you will be fine"...... errrr.... NO THANK YOU.
I refused for years and dreaded going to the hospital check ups still being told the RAI is what I should be doing (or surgery) and I still stood my ground and continued to refuse both options. It's really not what any of us want to have to face confrontational medical staff when we are feeling so ill. I was discharged from the thyroid clinic by another arrogant Doctor and handed back to my GP who had already admitted in 2011 that she knew absolutely nothing about thyroid problems, but I admired her honesty and I am still on a small dose 5mg Carbimazole daily, having routine blood tests and like most of us on this great site, I have good and not so good days, but happy to still have my thyroid gland.
My advice is to listen to your own body, read everything about your condition and don't be bullied of intimidated by the arrogant medics around you. Good luck and hugs for today x
Dear glo42,
I am so happy for you that you are still able to keep your thyroid. I held on to my thyroid to 25 years until it had to go for structural issues - huge goiter compressing vocal cords and windpipe. I was able to take Tapazole for 2 years with no side effects until I became resistant to it. I wanted to hold out as long as possible with my own body part.
While I know it had to go, I still grieve every day that I don’t have it anymore. What many don’t realize, because docs don’t tell you (but I knew myself without being told ) is that one pill is NEVER a solution for a problem as complex as replacing the thyroid. You and pennyannie are so right. You are never the same again. But I have adjusted to my new reality and just taking it one day at a time. I am closer than ever to finding the right dose of T4/T3 and gradually feeling better.
I wish you all the best. Keep well!
Many thanks Greekchick, hugs on their way to you too x
Hi glo, could I ask what your not so good days are like?
Hello ling, my not good days are having no energy, very lethargic, brain fog so I can't think straight, feeling anxious and really nervous, difficulty sleeping, can't concentrate, palpitations and generally feeling yucky. I'm sure many also know this feeling too well
AliciaH2018, I hope you are feeling a little better today x
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