Graves with relapse of hyperthyroidism - Thyroid UK

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Graves with relapse of hyperthyroidism

Sunny70 profile image

Looking for some advice from anyone with has happened yo and if anyone has tried RAI and what the success rate is. I have restarted Carbimazole 10mgs daily with TSH 0.02 I don’t know other levels. I just want to be better as I am now 70 and want to enjoy the time I have left! Thanks all

64 Replies

Hello, welcome to the forum sunny

When did you have the treatment?

Not had treatment myself but read much about it, about 10% of patients need a further dose. This won’t be known for at least 6 months after treatment. Sometimes it’s a year before the full affect of treatment can be assessed.

Over two-thirds will develop hypothyroidism within a year.

There are no additional problems associated with having additional doses.

Was this possibility not discussed with you before treatment?

I recommend you start collecting your own blood results and checking those other levels. Especially as you have been hyper previously. The TSH is unreliable and can stay low despite low thyroid levels. Mys TSH have been bellow range 7 years now & I’ve been euthyroid nearly 3.

Get online access or printed copies of results.

Sunny70 profile image
Sunny70 in reply to PurpleNails

Hi, I’ve not had RAI, wanting to know how people have been who have had it in case Carbimazole doesn’t work and I keep going hyper when I stop it and RAI is the only choice left or to go for RAI instead of Carbimazole, hope that makes sense!

PurpleNails profile image
PurpleNails in reply to Sunny70

Sorry, I misunderstood completely! I thought you’d had the treatment & relapsed.

Doctors put a limit on the length time you can take carbimazole. The aim is to stop it by 18 months but many need longer, usually on low dose. The guide limit is not based on science. I think it’s partly on cost effectiveness. You can choose to stay on it long term the risk of side affects remain the same. You should also have the option of RAI, or surgery if suitable.

My doctors implied I don’t have an option on treatment & that I had to accept RAI, stating this is the plan, but I decided to delay treatment & remain on carbimazole. You have Graves, which has the potential to go into remission.

On this forum you may read about examples of those who regret RAI & struggle to manage the under active levels, but to give a balanced view there are many who undergo the treatment & do not experience unexpected complications. They are living their lives without the need to seek help from a forum & there isn’t the data to show by what majority completely recover & the percentage may have some struggles.

Sunny70 profile image
Sunny70 in reply to PurpleNails

Thanks for that information I’ll have to think hard about it all

bantam12 profile image
bantam12 in reply to Sunny70

After many many years of Graves I had RAI around 20 years ago, went hypo within weeks and have been well on Levo since, wish I had done it earlier !

Sunny70 profile image
Sunny70 in reply to bantam12

Glad you are well and I guess you were quite young when you had it. Now that I am older (old) 😂 I’m not sure how my bod6 might cope with it, I’ll have to think about it, thanks

bantam12 profile image
bantam12 in reply to Sunny70

I was mid 40s when I had RAI, had Graves since I was 12 years old.

Sunny70 profile image
Sunny70 in reply to bantam12

That was such a shame you had it so young, being the age you are now you might understand what I mean by the body not coping quite the same!

bantam12 profile image
bantam12 in reply to Sunny70

It's no fun getting old 😕 especially when our bodies keep throwing curve balls !Actually taking the RAI is simple but there's no knowing how it will effect you, I had no side effects at all afterwards other than fatigue when I went hypo but I soon stabilised on Levo and despite having no thyroid I only need a relatively low dose.

Good luck with whatever you decide on.

Sunny70 profile image
Sunny70 in reply to bantam12

It’s good you are well and thanks

Some doctors allow patients to stay on a low maintenance dose of carbimazole forever. Others like mine claimed that you couldn't be on it indefinitely.I never felt right on carbimazole so I went with RAI after 3 trials of coming of carbi and relapsing.

RAI is not an exact science and you are most likely to be hypothyroid after it.

My friend had RAI and now just takes levothyroxine and is perfectly fine. I had RAI and was never quite right on levothyroxine alone so now I take levothyroxine and liothyronine. It hasn't been an easy journey.

Sunny70 profile image
Sunny70 in reply to Lalatoot

Thanks, consultant said it’s not worth trying to come off Carbimazole again unless I go for RAI so I have a lot to think about, thanks

Hi. I have a Graves diagnosis. I would say take your time and think about whether u r happy to choose a long term approach on the carbimazole or look for a definitive treatment being RAI or surgery. I am at this point myself so appreciate the seriousness of the choice that lies ahead. Thinking of you NIKEGIRL ✔️

Sunny70 profile image
Sunny70 in reply to NIKEGIRL

Thank you, take care

I had RAI for Grave's Disease about 20 years ago. I was really glad I had it done. I have to take Levothyroxine now but feel fine.

Sunny70 profile image
Sunny70 in reply to bleeny

Great!

Hello Sunny and welcome to the forum :

I have Graves Disease diagnosed at age 56 and had RAI the following year and I deeply regret this treatment option, though wasn't even given any option back in 2003/4.

I was well on the Carbimazole but told it was too dangerous to stay on long term so drank the RAI toxic substance, and now manage lingering Graves, thyroid eye disease, caused by the RAI and hypothyroidism.

I have found very little help nor understanding with my continued ill heath and I believe my thyroid fully failed around 8 years after the RAI treatment and there are details on my profile page should you wish to know more.

I was unable to acquire any other treatment option through the NHS so have now been forced to self medicate to maintain my independence and now at 74. I have my life back, thanks in the most part to this amazing forum and a few books.

For the past 3+ years I have been buying my own full spectrum thyroid hormone replacement and monitoring my own health and am much improved.

Primary hypothyroidism caused by RAI is known to be more difficult to treat :

It is essential that you are dosed and monitored on your T3 and T4 blood test results but in primary care the yearly thyroid blood test is generally just a TSH reading - which is a waste of time.

Symptoms similar to Sjogren's Syndrome can be experienced after RAI :

Symptoms similar to fibromyalgia can be experienced after RAI :

RAI is known to trash vitamins and minerals and when hypothyroid we need optimal vitamins and minerals for the thyroid hormone replacement to work effectively :

RAI is also taken up, to a lesser degree by other organs and glands in the body, including breast tissue, the genitals, pancreas and gastric mucosa.

There is also an increase in cancers, especially of the thyroid gland and small bowel.

The above are just few issues you may experience and I found the above and more, well documented on the Elaine Moore Graves Disease Foundation website should you wish to read further.

There is a further more recent study suggesting patients with Graves had worse thyroid related Quality of Life 6 - 10 years after RAI ingestion :

I'm sorry I don't know how to resurrect this paper for you - but it was printed in the The Thyroid UK monthly magazine some time ago :

If you are well on the AT medication, and I would suggest staying with what you know.

Sunny70 profile image
Sunny70 in reply to pennyannie

Thank you so much for taking the time to send me such an informative reply. I am thinking towards staying on the AT medication and when you said that people had worse thyroid related quality of life for 6-10 years I certainly don’t want that as I am 70 now and want to enjoy the rest of my life as well as I can. I hope you remain well, take care.

PurpleNails profile image
PurpleNails in reply to Sunny70

Link to article pennyannie referred to & Elaine Moore website

thyroid.org/patient-thyroid...

elaine-moore.com

Sunny70 profile image
Sunny70 in reply to PurpleNails

Thanks that’s great I’ll have a wee look.

Hi Sunny. I had RAI in 2014 and went hypo within 1-month. I had an added complication of thyroid eye disease, which had not been picked up, despite my very typical presentation: dry watery eyes, feeling like I had hay fever when I’d never had it before and big bags under my eyes. I was mid 40s at the tune and thought it was just ageing! Anyway because of my eye condition, RAI is not recommended without also taking steroids. I wasn’t given these and my thyroid eye condition was hugely exacerbated. It has taken a very long tome to get back to health and lots of Dr appointments at different hospitals and I e had to pay, but finally got into NHS service that understands thyroid eye disease that’s associated with Graves and other thyroid conditions.

From a Graves point of view, I have to take Levo and it’s not been a straight forward journey but I seem settled now, thankfully. For me RAI increased my Graves antibodies. The TSI ones. As these also cause eye disease that was the problem. But as others have said, I’m not sure there’s any telling how you’ll react. I do know some who’ve taken a completely holistic approach and focused on reducing stress, following specific diet etc and it’s worked for them. But that wasn’t really an option for me at the time.

I think it would be helpful for you to know the level of your Graves antibodies. Mine were so low before rai - 0.6, and went to +30 and off the chart. Over the years I’ve paid to have the levels monitored. From my research I seem fine when the antibodies are less than 15. But if they go over, then I get all sorts of symptoms and Levo replacement also gets affected.

I wish you all the very best in your decision. And hope the Carbimozole brings your symptoms down. 🙏

So sorry you haven’t had a good time, this time round my eyes are gritty and pains behind them, so how do they find out if anyone has TED?

pennyannie profile image
pennyannie in reply to Sunny70

So this reason alone means you should not be considered for RAI as it will likely exacerbate your eye symptoms.

There is the Thyroid Eye Disease charity - TEDct - who can signpost you to specialist clinics around the country where there is advice and support on this specialism.

Sorry - jumped in - and answered before I realised the question was directed to you xx

Sunny70 profile image
Sunny70 in reply to pennyannie

😊

TEDct are excellent. Definitely look at there website. You need to see an ophthalmologist with experience of TED. If you’re able to come to london I go to the western eye hospital, part of imperial NHS trust. I didn’t find moorfields that great. Western eye much better. Very thorough and did all the assessments - CT scan of my eyes, blood tests etc. Bust of luck 🙏

Thanks I’ll look on there, hopefully somewhere like that in Scotland, take care.

Scotland has excellent places. TEDct will be able to help you with where to go. 🙏

Great thanks

I have attended TED clinic at Falkirk for 5 years and they have been excellent.

Sunny70 profile image
Sunny70 in reply to asiatic

Thanks

Hello, I was diagnosed with graves disease in 2018 and am currently on carbimazole and levothyroxine (block and replace) .This is my second try for remission. I came off everything last September and within 2 weeks I had relapsed and had to start all over again. I had a scary migraine which my daughter thought was a stroke so I'm scared to come off it again. I have therefore asked to be referred to ENT to look into having my thyroid out.I have not taken this lightly.I cannot have RAI as I have TED so it will have to be surgery.Currently I am having difficulty controlling my levels and do not have the money to go private for consultations or to buy medication long term.It has to be the overstretched NHS .I am getting migraines and like you just want to feel well again.My daughter is getting married next year and I'm already worrying about being ill on the day.I can understand you wanting to be well again.So long as you can make an informed choice I think that is the most important. Get as much information as you can then you can do what's right for you.Good luck with everything.

I’m so sorry to hear you also relapsed very quickly, my consultant said that with my age and being a woman I probably would be cured after being on Carbimazole for over two years 🤷‍♀️ Is block and replace commonly used as he hasn’t mentioned that to me, just to go with Carbimazole for now? I really don’t think I want RAI as I’m now 70 and can’t be bothered going through goodness knows how long juggling my levels. I also think I need to get checked for TED. I hope you feel better soon and you are able to enjoy not only your daughter’s wedding, which is an absolutely fantastic feeling, my daughter was married 7 years ago, but to enjoy the rest of your life staying well. It’s just a nuisance!

pennyannie profile image
pennyannie in reply to Sunny70

Graves is an auto immune disease and as such, there is no cure in the true sense of the word.

Graves is an AI disease that just happens to attack the thyroid and it's because the thyroid is a major gland the symptoms expressed are seen, by some, as life threatening.

Graves does tend to wax and wane and said to be stress and anxiety driven.

There is likely a genetic predispostion and something has triggered your immune system to attack your body and your thyroid.

Recent papers suggest from a diagnosis of Graves and treatment with anti thyroid drugs remission generally occurs after 4 - 11 years of anti thyroid therapy, and the longer that the AT drug is used the lower the relapse rate in patients with Graves Disease.

Currently the NHS generally allocates around a 15-18 month window for treatment with anti thyroid drugs with the pressure to then suggest more drastic an action. Doctors are O/P waiting list time pressured and encouraged to process people through the system as quickly and as cost effectively as they can.

If your antibodies are still high and raging it is pointless coming off the Carbimazole as it will be seen as a failure and you'll likely think that you have no alternative but to loose your thyroid.

Maybe suggest to your consultant a further antibody blood test prior to coming off the Carbimazole just to be sure " it's all ok " and your Graves antibodies are now in range.

Sunny70 profile image
Sunny70 in reply to pennyannie

It’s a very complex disease! My consultant doesn’t think it’s worth a second try coming off carbimazole but will discuss options such as RAI when I’m more stable but actually going off the idea daily. My levels thankfully, are checked regularly. Take care.

pennyannie profile image
pennyannie in reply to Sunny70

Yes, you will be with regularchecks while under the hospital - the issue is there is little or no understanding in primary care of how to dose / monitor after RAI and all you get is a yearly thyroid function test which is a TSH blood test and used in isolation, totally useless.

Your consultant is needing to move patients through the system as quickly and as cheaply as possble as O/P waiting times for first appointments at crisis levels and there is pressure on all medical staff not to block the system if there is an alternative.

Sunny70 profile image
Sunny70 in reply to pennyannie

Thanks, I certainly won’t be holding back making sure I’m monitored regularly with the correct tests, in the nicest possible way of course! 🤣 there are lots of pressures on hospitals just now but they have to look after old as well as new patients as well as us keeping in the loop to make sure, unfortunately.

Hello again, I am female 56 years.First the endo tried me on carbimazole only ,called titration.I thought it would be better to take one tablet instead of two.I tried this for just over a year.However although I could get my bloods done every 6 weeks, by the time I got an appointment to see the endo again it was more like 3 months by which time my levels had gone either too low or too high.The aim is to gradually reduce carbimazole until your dose is just enough to keep your thyroid under control.I kept going too high then too low.It was never going to work really.I was referred to an eye specialist by my endo as I had puffy swollen eyes which were bloodshot and also double vision at times.It was he who said block and replace was better to avoid the fluctuations in thyroid levels which can happen with titration method.I started on that.40mg carbimazole per day to block thyroid production then gradually introducing levothyroxine until my best level was reached.For me it was 100mcg per day.This worked well for me but after about 9 months he told me to stop all tablets to see if I was in remission. My t4 levels tripled in 2 weeks and I had to start again.Ive recently had a hiccup as I was previously ok on 40mg carbimazole and 100mcg levothyroxine per day but now I was having migraines and resting heart rate in the 90's and over 100 which I ended up in A and E with.They concluded I was overmedicated and I've had to reduce levothyroxine to 50mcg per day and take beta blockers to prevent migraines and slow my heart a bit.I think the dose is a bit too low I think I'll need to go up to 75mcg but I've had a blood test and am awaiting contact from the endo.As usual it's a waiting game.I think I've got to a point where I think I'm not going to be able to be successfully and optimally treated in the NHS as it is, the resources just aren't there. I'll just have to hope that I'm one of those who does well on levothyroxine after thyroidectomy. I seem to have had no problems with it up to now.I am obviously scared of an operation but hopefully in the long run I'll benefit from it.A bit of a ramble I know but just explains the 2 types of treatment I've had.best wishes to you.

You’ve not had a good time of it and still struggling by the sounds of it! Thanks for the information of your treatment, I am not due to see consultant until January but I can phone his secretary any time, much easier than trying to speak to GP just now! I worked for GP’s for 19 years and the people who complained or were outright in asking then for the treatment they were entitled to always were listened to, so perhaps, and it is probably not natural to you or most people, you need to do the same as it’s your life, doctors, consultants etc are only human beings like us all. It’s their job to look after us. Keep safe and well.

Thankyou for your message.I can and do ring my endos secretary when I've had bloods done etc and as a person he's a very nice man, approachable and I can always ask questions and he listens.I think the main problem is that he's a diabetic specialist and he's swamped with work. A situation which has got worse with covid aswell.

It’s definitely worse but glad you are able to speak with him 😊

I had RAI after carbimazole failed to correct hyperthyroid twice. My daughter and brother had it too. I was 31 in 1981, daughter about 19 and brother in his 50s. I’ve been on thyroxine replacement ever since. If the carbimazole fails again then it may be recommended with every six week blood tests to check thyroid levels. It used to be that the thyroid gland was usually obliterated but maybe it’s more subtle these days and you may not need thyroxine. It certainly worked with my friends cat which hasn’t further treatment since RAI !!

Sunny70 profile image
Sunny70 in reply to Catseyes235

Thanks, my consultant said he doesn’t think it’s worth trying to come off carbimazole again apart from if I go for RAI which I’m going off the idea daily, I just want to be able to enjoy life again, take care.

Catseyes235 profile image
Catseyes235 in reply to Sunny70

RAI really not bad at all and should be on correct dose of thyroxine within a year. Mine took longer but that was due to idiot young doctor not giving me first blood test after RAI despite me saying I was becoming hypo because he thought there were too many blood tests done and he thought I seemed fine. That was 40 years ago and docs are a little less arrogant. Once on correct dose that was it ...just took my pills every day with no other thought and got on with life!

Sunny70 profile image
Sunny70 in reply to Catseyes235

I really wonder how some doctors actually qualified 🤷‍♀️ They should listen to their patients as we know our own bodies, how would he know if you were ‘fine’! I’m glad it’s working for you but I’m really not keen on wasting time as I’m now 70

Catseyes235 profile image
Catseyes235 in reply to Sunny70

I’m 71 ...!

Sunny70 profile image
Sunny70 in reply to Catseyes235

☺️. Yeah but you had it done at 31 an age much easier to cope with it I’m guessing but don’t want to start it all now 😁

Catseyes235 profile image
Catseyes235 in reply to Sunny70

Each to their own but the actual process involved having a drink, don’t even think there was a scan - waiting around and going home...nothing else, no side effects. Just stay away from people for a bit!

Sunny70 profile image
Sunny70 in reply to Catseyes235

Yep I had the information a while ago thanks it’s just coping until levels stabilise but I’m really glad it worked for you, stay healthy and safe.

I live in the US and have been on and off PTU and methimazole (same thing as carbimazole) for 13 years. I have been on methimazole for about 2 years. All of my doctors and endos have pushed RAI on me and I have told all of them I didn't want it because I felt fine on ATs. There have now been several studies done about long term ATs and as long as liver tests are done regularly and thyroid levels are checked, there's no reason you can't stay on them. My endo now finally agrees with me and even admitted that I have a low to nothing chance of having any liver issues.

Everyone needs to choose for themselves. I didn't want to have to go through potential years getting my levels balanced after RAI. I was doing fine on methimazole.

Do what ever feels right!

Sunny70 profile image
Sunny70 in reply to twinkiegal

Thanks so much for that advice. I am if Tegan same thinking as you as I am now 70 and want to feel as well as I can for the rest of what I have left on this earth! I didn’t know about possibly affecting the liver so I’ll be sure to push for regular monitoring of that along with thyroid levels. Stay well.

PurpleNails profile image
PurpleNails in reply to Sunny70

This may be of interest:

The most serious risk of taking carbimazole is a drop in white blood cell called neutrophils or granulocytes causing agranulocytosis also liver issues. The risk remain the same while taking the medication. So this means the risk does not lower or increase over time.

I found this article saying the incidence of carbimazole induced agranulocytosis is placed at 0.3–0.6%.so it is low.

ncbi.nlm.nih.gov/pmc/articl...

Liver issues are a concern too, although I believe the risk for liver issues when using PTU is slightly higher, which is why PTU is 2nd option.

endocrine-abstracts.org/ea/...

As the cases of serious side affect are rare the are listed as <1%.

In the UK patients on carbimazole or PTU are not given regular, full blood counts and Liver Function Tests (LFTs) to routinely monitor for potential risks. (Yet it limited to 18 months on the basis of the risk?) We are expected to be vigilant for issue and report for testing if required.

Sunny70 profile image
Sunny70 in reply to PurpleNails

Thanks for that, I will definitely be asking for those levels to be monitored carefully as don’t want to add any more problems as hard enough coping with it, take care.

I had RAI last Tuesday. The nodules on my thyroid have been getting larger and I've had more and more trouble swallowing. I'm 69 and doing okay so far. I was told that the nodules will shrink. My endocrinologist said that I had about a 50% chance of emerging with a functioning thyroid. I'm expecting total destruction.

Interestingly, my cat also underwent RAI. The vet tells me that he has a 98% chance of being cured.

Sunny70 profile image
Sunny70 in reply to kvmj

I think with nodules that’s the option to have RAI, fortunately I don’t have any although I haven’t see my consultant for so long because of COVID. I wish you success and a healthy future.

anna-c profile image
anna-c in reply to Sunny70

I had nodules on thyroid as well as having graves . I was told that as we age most people will have them, in most they will not cause a problem. In my experiance you dont have to have RAI because of nodules alone.

Hello Sunny . My personal view is stay the heck away from it. A useless Endocrinologist advised it even tho I was doing well in Carbimizile .Basically destroyed my life . Think hard before you take it ! Pp

Sunny70 profile image
Sunny70 in reply to Pinkpeony

Oh wow that’s horrendous for you, I’m so sorry to hear that ❤️ I am actually thinking of staying on carbimazole as don’t have time to be wasting it on getting levels to stay stable, I’m just trying to enjoy my life as I am now 70, take care.

Pinkpeony profile image
Pinkpeony in reply to Sunny70

Strangely enough I was 70. Now 79 lot of people are fine on it. Just join all the dots and cross the t s. I wish you well. Pp

Sunny70 profile image
Sunny70 in reply to Pinkpeony

That’s so good, I feel so rubbish all the time I just want to get better (ish) I’ll see how I get on the the carbimazole again and take it from there, thanks.

If you are well on your medication to address hyper and not having any ill affects caused by medication I wouldnt personally have RAI, I did and now regret it. I believe it was 'sold' to me so I didnt have to have regular visits to endo and cause a cost to the NHS. I was told only 1 pill to control hypo, what a joke, its caused a ripple of health problems afterwards. The endo shrugged his shoulders when I said I was exhausted following RAI and said rai can cause ME in some cases, see your GP! Endo had been reasonable up to that point but looking back I dont think he / the team I was under knew enough or cared. I wished I had done more research now I am paying the cost. I accept for some it will be the right decision depending on their circumstances and some may cry me down but my advice is if you are ok and your hyper is being controlled well and you are ok with the meds stay clear of RAI. All the very best, take time to decide dont be bullied.

Sunny70 profile image
Sunny70 in reply to anna-c

Thanks so much for your advice and sharing your experience which sounds awful. The more replies I have the more I am wanting to stay on meds as can’t be bothered feeling rubbish any longer so I’m binning the idea of RAI and looking to enjoy the time left on this earth 🤣. I hope you are well soon, take care.

anna-c profile image
anna-c in reply to Sunny70

For what its worth, I think you have made the right decision. I am ok thanks, I could be worse and it isnt worth dwelling on but if I can help someone else to make a decision about RAI I am happy. Enjoy your life and take care 😊

Sunny70 profile image
Sunny70 in reply to anna-c

😊

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