Just looking for some information really due to Graves I've had since 2016. I had decided to stay on AT medication to see how I went. Unfortunately as it turns out not that well.
Can anybody with much experience tell me if the statement is true that having treatment for Graves Disease (RAI/surgery) "does not stop the disease process" and that it can still then go on to attack many other organs. I have read it on here as well so presume it must be true. Does this mean that whether you remove thyroid from the picture, or not, it can attack the heart, kidneys, liver, even brain say? It's just that much other stuff I've read online about Graves does not mention other organs involved (except maybe TED) and seems to make it all about the thyroid and that having treatment to destroy/remove it solves it basically? It says that generally Graves Disease does not shorten lifespan/not life threatening but surely if it could attack all other organs damaging them then it would shorten lifespan significantly?
It's just my ferritin is high in range 193 (20-200) and my diet mainly vegetarian and not high iron so would not expect this reading. My GP account info says that ferritin can be artificially high in autoimmune disease due to "organ damage" so just wondered if this could be reason why I have seen a deterioration in my kidney function over last year and a half - or could be more likely due to medication I am on - block & replace (40mg Carbim/100mcgLevo) for 19 months now causing it? I did ring NKF and they didn't know much about Graves but said any medication could affect kidneys and is different for everybody - some medications will affect some people and for others the same medication won't. But I suspect something is going on.
Mentioned to endo and he says for me to therefore agree to definitive treatment, RAI (as I can't really do surgery) which am reluctant/terrified due to a lot of stuff read, including on here, about it being a poison and causing lung problems/pulmonary fibrosis even (depending on dose), large increase in antibodies for extended period with worsening Graves damage, salivary gland/swallowing problems (and I already have that issue), weakened immune system, lower levels of blood cells, thyroid storm, increase in many cancers (solid as well as leukemia), teeth problems - and even I read online - death after undergoing RAI for some people due to radiation (although no doubt quite rare). This is all stuff available online but how true I'm unsure exactly - although know some is and don't know how likely or rare?
I appreciate some do okay after RAI - and won't be many on here shouting about it as wouldn't need to be (only the ones mainly who are not well or have Levo conversion issues) but equally the ones won't who have fared very badly either - as they maybe no longer around/too ill. So needs to be more balance really with, you would have thought, studies showing how successful it is. I have seen the Quality of Life survey though that says at 6 - 10 years after treatment, RAI has lowest QoL scores than either ADT medication or surgery. However it is still pushed by NHS as first line treatment for Graves (even though my endo agreed with this study, he still suggests it???)
To be fair though, this endo does not force me into it and did say if I am concerned about B&R side effects, I could just go back on 10mg Carbimazole monotherapy but I have severe Graves/fast relapse due to high antibodies and affects my heart badly with severe symptoms (every relapse gets worse). This has now caused heart problem - "heart block" after last relapse which affects the electrical conduction or rhythm - slowing it down basically, so I don't really want further damage.
So trying my best to weigh up what to do. Very difficult when you don't have all the information, or know whether the information you read on various websites is hearsay/inaccurate or true - so just wondered whether all the very well informed/experienced people and patients on this site know any of this?
Just so ill now so I would be very grateful for any replies that could help. At a loss with it all. Many thanks.🙂
Written by
LonelyPlace
To view profiles and participate in discussions please or .
So far as I am aware, Graves disease doesn't attack organs.
The process is that your immune system creates antibodies which stimulate your thyroid. This overrides the usual controls and results in you becoming hyperthyroid.
Thyroid Eye Disease, although associated with Graves disease (and sometimes called Graves Ophthalmopathy), is somewhat separated. People with no signs of Graves disease, and quite possibly euthyroid or hypothyroid, can suffer TED.
Treatment - whether with an antithyroid medicine, RAI, surgery - does not directly prevent your immune system creating the stimulating antibodies. But levels often drop, sometimes dramatically, with treatment.
The TSH receptor antibodies (TRab), which are long acting thyroid stimulators, are highly specific to the TSH receptor. I think most other issues are caused by being hyperthyroid rather than by the TRab.
I hope others, those with personal experience, will also reply.
That's helpful as what had read I was thinking it could attack other organs apart from thyroid, but perhaps as you say, it is the fact you are hyperthyroid (too much thyroxine) that can cause other stuff (such as is already known about) like heart issues/osteoporosis etc. so really just affecting the thyroid. I even asked my previous endo about this though, about attacking other organs and he just nodded, so thought it was correct but maybe he had misunderstood what I was asking.
I had RAI many years ago and it was the best thing ever, I had no side effects afterwards and have been stable on Levo ever since. I haven’t been “attacked, had cancer or died “! or had any of the other stuff you have read online, best not to believe everything you read !
Yes I do have a few heart problems BUT they were caused by 30+ years of dealing with unstable Graves and before I had the RAI. I will be 70 shortly and don’t regret my treatment choices in anyway, wish I had done it earlier.
It's great if it works as it has for you - I would take it tomorrow if I knew it would for me. But you do inevitably read stuff and then .............. you're not so sure again, which constantly happens with me and put off any definitive treatment. Now it seems my heart has been affected, probably due to hyperthyroid, and for some reason my kidney function has reduced whilst on 40mg Carbimazole which has made me think it could possibly be due to that and RAI might be the only option left for me.
None of us know the outcome of any treatment or medication but if only the negatives are believed then nobody would have treatment or surgery for anything, why assume it’s not going to work 🤷♀️ There are others on the forum who have positive reviews.
Yes true - I think it's just the fact that it's irreversible once you've had it but in reality it may be the only option I really have left anyway for me.
Lot of thinking and discussing to do at my next appointment (now waiting for) with consultant. Haven't had one for about 19 months so hopefully anytime soon............
The thyroid is the target of the Graves’ disease process. So with no thyroid the process involved of over stimulating thyroid doesn’t manifest.
The mechanisms involved and prevalence with TED isn’t fully understood.
I think the mid-understating arises as organs MAY become affected as consequence of under treatment / over treatment / (poorly manage treatment) during phases of being either hyper or hypothyroid, especially if occurring for a prolonged time.
The most severe side affects of RAI discussed occur with the very high doses of RAI which are given with treating thyroid cancer the vast majority would not encounter them.
It's good to know that only the thyroid is directly affected/attacked by Graves and not other organs. I think the confusion is I've read that "Graves attacks can be multi organ" and such like which has me thinking it attacks other organs directly whereas the effects on other organs, with Graves are due to too much thyroxine due to thyroid or of course over/under medication as you said above. I thought what is point in having RAI if it then may go on to still attack other things anyway but as that isn't the case, then I will have to consider it.
As I understand things Graves is considered life threatening because it attacks the thyroid which is a master gland which produces vital life giving thyroid hormones and runs and synchronises the whole body, and provides the fuel to run the body and is the automatic gear box working 24/7 - to keep everything in balance.
If you do not medicate Graves you risk continuous hyperthyroidism - which would mean your body running faster than normal and putting undue stress on your heart and other body organs, ultimately facing the loss of bone and body regeneration, as unable to repair replenish and restore the body o/night ready for the next days needs.
My heart was never involved and my symptoms were Blocking rather than Stimulating and in all honesty I now realise- now that I'm self medicating NDT and so well - that I have been hypothyroid from a child and my situation nothing like any other forum members journey.
Undiagnosed dyslexic, left handed, alopecia at 11 + exam - urticaria, lived with joint and severe back pain, sciatica, in my 40's emergency laser treatment in both eyes at Moorfields for holes and tears - diagnosed iritis though given no explanation as to why - in my 50's my father, only brother and mother all died within 6 years of each other - with my much younger sister producing 4 girls within the same time frame for me to play auntie with - and bang -
I was totally exhausted as I had been for very many years, never managed to get a diagnosis of anything - prescribed various NSAID drugs - the only pain relief that worked was Butacote but that became impossible to get prescribed - until I developed insomnia - 3 months after having been attacked by a man I employed as my assistant manager -
I thought I'd just get prescribed some sleeping pills - but got a diagnosis of Graves - shocked I extended my hands and the fine tremor was there on the middle finger.
So why am I writing all this - because maybe this was all Graves related - I do not know - but I do know now I have a decent level of T3 for me - my dyslexia isn't the problem it had been for 50 odd years and I presume I was living with Graves Blocking antibodies causing me symptoms of hypothyroidism that were never picked up as my TSH never rose high enough.
The AT drug worked, the insomnia relieved, I was back to my normal, and I also experienced a period of feeling marvellous, my aches and pains were relieved, I was eating more than usual and loosing weight - first time in 50 years - and had energy - this period was short lived and was just before RAI thyroid ablation and then I reverted to the hypothyroid state I had been living with all my life and was prescribed T4 monotherapy.
Eight years post RAI - around 2014 the no saliva and dry eyes developed - it's on my Profile :
Refused any treatment option other than T4 - I started self medicating in 2018 and have my life back - and now optimally medicated I am not dealing with early onset dementia, the kettle isn't in the fridge and my brain is engaged most of the day.
Sorry - I'm waffling on - take from it what you will - I've have lived with stress and anxiety from a child - and think with Graves hypo and my TSH didn't respond in the normal way since I never got a diagnosis - and as a child just thought we were all walking around challenged one way or another - though I seemed more challenged than most physically, mentally, emotionally and psychologically and ' didn't have the words ' to know any different.
There will undoubtedly be people who need definitive treatment - as if you are not well on the AT drug and you can't get on with your like - what is the point ?
My experience of RAI consequences has never been detailed on here by anyone else - though Elaine Moore confirmed to me - I wasn't alone having suffered such symptoms so long after the administration of same - but we do now have some research suggesting a thyroidectomy is a cleaner, safer option.
Without a thyroid you will have no extremes of symptoms as your own power supply has been cut off - either by the RAI slowly burning through and rendering your thyroid disabled - or by a thyroidectomy and having your throat slit open - and it is like being being between a rock and a hard place - as the options dreadful :
As we know from this forum, thyroid hormone replacement according to the NHS guidelines leaves many of us looking for answers on here - but we are just 20% for whom T4 monotherapy doesn't resolve symptoms, so you may or may not face a clear and concise treatment regime that works well for you, and why forums likes this exist.
T4 monotherapy works very well for around 80% of those who take it - but I do believe if you lose your thyroid it makes sense to replace with full spectrum thyroid hormone replacement to restore you back better to where you were before developing hyperthyroidism and back to your ' normal ' and health status.
At the end of the day we are looking at an Auto Immune disease - but without a fully functioning working thyroid in situ I tend to think the extremes of hyperthyroid are vastly reduced - and it becomes something of a non starter -
as even if the antibodies are still circulating in the blood stream pushing down on the TSH - there is no thyroid there any longer to ramp up T3/T4 thyroid hormone production -
just as if in a car - pushing down on the accelerator pedal ( the TSH ) doesn't work if there is no fuel in the tank ?
Does that make any sense ?
You may find more information reading around on Elaine Moore - I think I've given you this before -elaine-moore.com - the website maybe down as Elaine isn't well and I believe dealing with cancer.
Thanks Pennyannie for taking all the time to write al that and for the links. Yes I understand what you are saying. I've read some of Elaine's website before - it is very informative and is one of the things that discourages me from having RAI. I'm sorry to hear she is not well now and makes you wonder even more about dreaded RAI!
And it sounds like you've been through some terrible times in your life. I'm sorry about that. Life does take its toll on you as I know. As an only child I was trying to work self employed but difficult as was carer for my mother and father for at least ten years as they had many disabling conditions. Moved them to a bungalow near my house as Social Services said they would be in a care home otherwise which they didn't want. It ran me into the ground and always stressed (and Social Services didn't make it any easier). My mother died in 2019 from cancer and her last 5 days/nights I spent with her in a hospice. My father died 6 months later after falling at home then caught covid in hospital which killed him. Then one day the Police turned up at my door, telling me the local funeral directors I used (Legacy) for father had been involved in a scandal. After funeral parlour told me his ashes were scattered, the police found them much later, with his name on in an industrial unit along with many others and even bodies that should have been buried/cremated and never where. Only now has a file been passed by Police to CPS after a long investigation.
Now Graves has wrecked my life. In 2016 when diagnosed I listened to what Drs told me and didn't think anything of it as made it sound nothing. Just take a tablet, get remission and hopefully okay. It was at first. After been on Carbimazole 18 months I got remission for just over 3 years and was well in that time - thought I had it beaten but then came back with a vengeance towards end of 2020/early 2021, and had 2 serious relapses and hardly any remission inbetween. Been told by endo I have severe Graves/high TRAb and unlikely to get remission for long.
To me it looks like it could have been all the trauma with mother/father dying etc that caused the relapse. I get high stimulating antibodies which means I go overactive quickly and get severe Graves symptoms - for me the worst are my heart. Often feels like having heart attack/can't breathe/sharp stabbing chest pains/tachycardia. I do get sweats/tremor/tired/weak muscles/anxiety but these are nothing in comparison. So am terrified of relapsing again. I already have another heart complication now (heart block) which could be due to Graves but not well on block & replace medication either. I also knew a guy who became a friend. He was a publican and a nice guy but I didn't know he had Graves as he never mentioned it. But I think in 2013, in his early 50's, he died of a heart attack. He was quite well known in our city so was on front page of local paper and it said it was due to Graves that he had. He was very thin and had the large protruding eyes but I never had Graves then so wasn't aware. Makes me shudder when I think how I am when I relapse.
So now feel my only other option may be the dreaded RAI option. Even though I think like you that thyroidectomy is the much better option, I don't feel like surgery is wise as I have other issues and now with this heart condition as well and with anesthetic etc. don't think it's a good mix. But am scared to have RAI really after your experience of it and the many many others and all the known issues/side effects with it. So that's why I am trying to find out as much accurate information on it as possible as this would be my last hope and irreversible. Also I worry about affording T3 medications as I have had to give up work in 2021 due to it (didn't intend this as needed to build up my pension/retirement savings) and have heard they can cost huge amount per year, then may also need private doctors to prescribe, private tests and loads supplements/exotic diets (eg. gluten free etc etc) - none of which come cheap nowadays. I am concerned this could run into many many hundreds at the least or even thousands a year, I'm not sure just how much but I know NHS won't fund it.
So just trying to navigate all this now as well as look after my partner, who had vascular surgery on blood clot and veins in one leg late last year but hasn't gone that well and now has inflammation/phlebitis in it causing her lots pain and unable to walk. She then was supposed to be getting vascular surgery on the other leg but that's postponed and she's not so sure now at all after this episode. Life doesn't get any easier does it!
I gave up my life in London to go back home to live with my Mum and followed a similar path caring for both my brother and then my mother until they deaths - and as we know the mental and emotional toll is considerable.
For the vast majority of patients the treatments offered work well - and if well on the AT drug this least invasive treatment option would now seem to be the best option - for many people they have one ' blip ' and the thyroid resets itself without a problem - bu for those who can't tolerated the AT drug or have several attacks, compromising their health further definitive treatment is the next best option.
Treatment with RAI is very easy and simply - no operation - and treated in O/Patients -having surgery read as more complex - but it isn't for the surgeon and you are asleep.
You still have issues going on - and there is a tendency to overthink everything and get caught up in an ever increasing circle of doubt and ' what ifs ' - which is self fulfilling -making the situation worse - with you living in limbo land - having no peace of mind - and unable to move on - though know you must.
No one can tell you what to do - which ever you choose - there are positive and negatives - but you will get through this - and we will be here, on your side, should you need a sounding board and if you need to self source and it is not thousands of pounds - I've only on a single persons pension.
Yes it's a hard life isn't it. Isn't made any easier though by the NHS we're now left with. It doesn't work and they just leave you ill and don't seem to care. The GP (large group that have practices around country) is no use/not helpful and never any appointments - yet when I have been there, there is hardly anybody in the waiting room anymore? I once complained to someone on reception on the phone (and I wasn't shouty or abusive at all) and then a male doctor chastises me because of it when I went in - when I had finally managed to get an appointment a couple of months later that is. They are a law unto themselves. Unbelievable!
Endocrinology here is no better. I was told I would have another appointment at 12 months after last and it's been 19 months now and waiting for another. Don't see them to be able to discuss anything, then when you do it's 20 minutes. I am not sure you can even trust them after everything I and many others, such as yourself, have experienced. All along they always push RAI as the "best" option but they never give you any proper information on it with the risks - I honestly was told none - I have read everything about it myself. All they gave me was the standard NHS leaflet telling me the procedure and how easy it all will be.
That's why forums such as this are invaluable, as there are many people/patients with similar issues who can give good advice and have much more knowledge. It's much appreciated as I don't know what I would have done otherwise.
Many thanks to you and all the other staff, - as well as other forum members 🙂
This forum is sponsored by Thyroid Uk - thyroiduk.org which is a charity and we are all forum members - just that some are better equipped and can commit to a timetable of availability to try and offer guidance and support to the ever growing number of questions and posts received.
Looking back to 2004/5 I never saw the same endocrinologist more than twice and when I mentioned this was told most were just in the department for 6 months and on rotation as they ' worked ' in various departments while training so to help them decide where they might like specialise.
So there was no follow through and no one there long enough to ever see the results of their actions - so l would imagine there was little job satisfaction - with the computer algorithm upping or downing the AT drug for them to not need to understand much.
I was just given 2 leaflets sponsored by the BTA regarding RAI and TED - to read about my illness and treatment - being dyslexic they didn't mean much - but no one said much about anything when I tried to ask questions and I just felt I was being a nuisance.
I still have the leaflets and they are obsolete - whether they were in 2004/5 I do not know and I just hope if these BTF leaflets are still in circulation they have been updated - and not biased, but I shall not hold my breath.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Very Scared and suffering with Graves Disease - don't know what to do next?
Graves Disease 
Graves Disease Diagnosis 
RAI i would love to hear your experiences 😊 
Graves disease
