RAI or continue on Carbimazole?

[Red_leaves]

Does anyone know the long term risks of staying on Carbimazole? I have been told that the Radioiodine treatment is the gold standard of treatment, but the articles online talk about increased risks of cancers. I am on 5mg Carbimazole and have been for 5 and a half years, with 3 monthly blood tests. Twice tried without but relapsed both times, so am back on it. I don't mind taking a tablet a day for the rest of my life, but can't really understand why RAI is recommended over doing this. Is it because there isn't any long term data about Carbimazole? I'm confused as to what to do for the best.

[tattybogle]

Hi red leaves, there are members on here choosing to stay on carbiamazole rather than have RAI/ thyroidectomy  PurpleNails

The risk of the adverse liver reaction to Carbimazole is not increased the longer you are on it as far as i know , i think the risk of having that reaction is the same if you take it for a few months or a few yrs ( obviously it's a serious reaction as it involves the liver and if it happens you have to come off straight away , and the other antithyroid drug can sometimes be tried ( PTU )

Starting and stopping antithyroid drugs may increase the chances of the reaction happening.

there is research showing the longer you stay on antithyroid drugs the better the chances of staying in remission.. hopefully some one will have the link  pennyannie has it i think.

One of the main reasons for the statement that RAI is the 'preferred treatment' is that it is quick and easy to give . with no surgical risk or cost, and will nearly always result in a certain resolution of hyperthyroidism and moves patients off the expensive/ overcrowded endocrinology list amd onto the cheaper GP list for much cheaper lifelong treatment for the ensuing hypothyroidism with Levothyroxine . ( Levo cost about £15/20 a year) .

Monitoring antithyroid drugs requires staying on endocrinology books/ consultations . Levo monitoring is purely GP territory / one blood test a year once stable

There are those of us who think endocrinology departments over emphasise the risks of Antithyroid drugs.. while under emphasising the long term effects of RAI .... and completely 'forget' to mention that a significant minority of patients do not do well on Levothyroxine.

if you are unfortunately one of those ( at least 15/20% ) of hypothyroid patients who do not do well.. the NHS will not easily offer any additional T3 to try to help .

'Combination therapy' with Levo + T3 is very hard to get on nhs and in some areas it is still impossible for 'new' patients to get it on the NHS ( bit of a post code lottery at present) ..

take your time to make the right decision for you .. and don't let them pressure you into rai unless you want it . if you decline rai / surgery , they have to continue monitoring you on antithyroid drugs

[Red_leaves in reply to tattybogle]

Thank you. That’s really helpful. Lots to consider but think I’m veering away from RAI now!

[pennyannie in reply to Red_leaves]

To be honest as a patient - I can't see even one reason in favour of taking RAI !!

[bantam12 in reply to Red_leaves]

I had RAI and don’t regret it one bit, after 30 years of Graves relapses, partial surgery in my teens and never being well on Carb or block and replace I asked for RAI and it worked within 4 weeks. I’ve now been stable on Levo for 20+ years 😊

[Beefull8]

I wanted to add that I have a relative who had RAI treatment several decades ago and had cancer in that area. The cancer had grown for so many years that it’s hard to say if it started in his thyroid. Not to sway you in one direction or the other but had he known about the potential risk, I doubt he would have done it. A “simple” procedure almost risked his life.

[Red_leaves in reply to Beefull8]

Thank you for your reply. When I go online that’s what scares me about it, the cancer risks. Got some serious thinking to do about which way I go with this. Thanks.

[pennyannie in reply to Red_leaves]

Does the hospital not detail the risks of RAI thyroid ablation nowadays ?

I know I was told nothing back in 2004 and the leaflets I was given for Graves/ TED / and RAI totally useless and lacking in any information that was a negetive ?

My TED was cased by the RAI - though the hospital denied this fact also ?

[pennyannie]

Hello Red Leaves and welcome to the forum :

Are we to presume that you have Graves Disease ?

Graves is an auto immune disease for which currently there is no cure

The issue is more one of you immune system having been triggered to turn around and attack your body, rather than defend it, and quite why this has happened to you is the question and how does one calm down one's own immune system - and to that end you may like to read around on the research and books of Elaine Moore - elaine-moore.com

Elaine has a section on alternative, more holistic complimentary treatment options and delves into life/work balances and personality traits that appear to be more prone in Graves disease patients - which I found amazing and relative to me - though I only started my research into Graves 10 years post RAI thyroid ablation when very unwell and finding no help within mainstream medical and thought maybe that Graves had come back - only to find out it never went away.

We do now have some research papers which you should consider and this first paper is suggesting the longer the patient stays on the anti thyroid drug the better the outcome for the patient -

pubmed.ncbi.nlm.nih.gov/338...

This research paper is with regards to the longer term aspects of having ingested RAI -

ncbi.nlm.nih.gov/pubmed/306...

RAI is a slow burn and ultimately it will slowly burn out your thyroid in situ and you will become hypothyroid and reliant on thyroid hormone replacement medication every day for the rest of your life.

Unfortunately treatment for hypothyroidism is in primary are, where I'm afraid the ability, knowledge and facilities to even get the appropriate blood test run falls far short of what is needed and likely why this forum is so busy with people forced to arrange their own private blood tests and seek explanation on here from other patients who have also been there .

I think we are now up to around 130 thousand forum members all of whom, like me, started off on here looking for help and advice and others like yourself wanting more information so to make an informed decision as their next best step forward.

There are no published research papers yet, but other health issues have been found and the incidence of developing cancer some years later not an uncommon thread though where the burden of proof / cause / effect lay is another question.

A little more information on your thyroid journey would be of help.

Graves is said to be a stress and anxiety driven AI disease and there is generally a genetic predisposition - maybe someone in your extended family - a generation away from you with a thyroid health issue ?

Personally speaking I would suggest staying on the AT medication long term and give your immune system time to settle down and if well on the AT drug why not stay on the non invasive route you know ?

You will need continued monitoring at the hospital but at least you will get blood tests detailing your T3 and T4 levels and if in any doubt, we can help explain to you what this all means and use this forum, and Thyroid UK as your 2nd opinion on your blood test readings.

I think it all comes down to the degree of the inconvenience suffered by the patient.

There will be some cases of Graves that are not resolved well on the AT drug and/or the patient who is unable to tolerate these drug.

In which case I think a thyroidectomy the better option as it is ' a cleaner and more precise ' option rather than drinking down a toxic substance that we know is taken up, to a lesser extent by other glands and organs in the body - and quite why RAI is still offered in a health care setting eludes me.

[Hookie01]

Hi, I had RAI over 4 years, if I had the option again I would either try to stay on meds or have surgery. Though I believe the meds have damaged my liver and having RAI caused more damage to my liver. RAI depletes vitamins and minerals and I now have mild TED. I also put on a lot of weight. As for cancer, possibly there is a small chance but then there is always a small chance no matter what you do in this life. I used to smoke, probably more chance getting it from that. I don't think there is any evidence it causes cancer and from the amount of people on groups I'm on, I'm yet to find someone who has cancer from it, so if it does seems chances are very low. Good luck.

[Red_leaves in reply to Hookie01]

Yes it would be difficult to pinpoint what would have caused cancer if it did happen. And I’m sure there are other bigger risks such as smoking and drinking alcohol. But I think if I’m feeling ok on the medication I’m on, I’m starting to think why change things. I’ve not seen anyone on this forum yet who recommends RAI which is making me think seriously. Thank you for your insight.

[bantam12 in reply to Red_leaves]

The many people who have had RAI and done well are off living their lives so won’t be on the forum, the nature of a forum is you will generally only hear from people who have problems of some sort, so not a true picture as one sided !

I’ve replied above with my experience but I would add that having active Graves for so many years did effect my heart, one reason I went for RAI.

I had very mild TED beforehand but having RAI didn’t make it worse and actually it totally resolved. My sister who also had Graves had a total thyroidectomy and her TED never returned to normal and my other sister who is Hypo (never had Graves) had very bad TED and again it’s been a constant issue so RAI isn’t necessarily the reason.

[pennyannie in reply to Hookie01]

I think Elaine Moore has come a cropper herself in this area.

[Red_leaves]

Hi. And thank you for your detailed reply. Yes I have Graves’ disease. I have been on Carbimazole for 5 years, so far rejecting the recommendations of the drs saying that/assuming that I will have the RAI. But now I think I’ve been worn down enough that I started to wonder if I was doing the right thing staying on Carbimazole. So I had a discussion with them about RAI and have at present agreed to it, but as it’s getting nearer I’m starting to have my doubts again. Neither the drs or the thyroid nurse have adequately explained to me why staying on Carbimazole is not recommended. But now I’m starting to see why RAI is pushed. I feel ok on Carbimazole and am on a low ish dose (5mg daily) so I think I am veering towards not having the RAI. Thank you for your input, it’s very helpful.

[pennyannie in reply to Red_leaves]

When metabolism isn't running quite right for the individual - either too fast as in hyper or too slow as in hypo - the body struggles to extract key nutrients through their food no matter how well and clean you eat.

I strongly suggest you get your core strength vitamins and minerals run - and post the results and ranges back up on here in a new post unless you have any current results as this forum run very fast and we try and answer everyone as thoroughly as possible within around the first 24 hours of posting.

We need to maintain ferritin, folate, B12 and vitamin D at optimal levels for optimal health and if not at good levels these core strength vitamins and minerals will be compounding your health issues further.

You are on a low dose of the AT drug and after 5 years I'm sure it's all getting you down a bit - and yes, worn down are the appropriate words.

have your antibodies for Graves ever been rerun just o see what's going on there - though Graves does tend to wax and wane ?

Do you have any blood test results to share - a TSH, Free T3 and Free T4 reading and range ?

Your dose of the AT low - maybe that tablet needs cutting in half and just take 2.5 mcg daily ?

[Milkyway88]

Hi Redleaves,

My opinion based on personal experience.

If I had my time again I would not have RAI. Being hyper on carbimazole was much easier (and felt much better) than the daily battle of being permanently hypo. Just one negative example - a few years ago I discovered that the apices of both lungs are scarred, almost certainly caused by the RAI, as it wasn’t there before.

Do loads of research and good luck x

[PurpleNails Administrator]

I have a hyper nodule causing high levels and have been on carbimazole about 4 years continuously.   I’m currently on a 10 / 5mg alternative days.  GP monitors levels as specialist only wanted me to remain on the books if I undergo treatment soon.  

Doctors view 5mg as lowest dose but many find they can manage on lower that 5mg by halving or taking 5mg every other day.  

Was you hyper confirmed as Graves by positive TRab or TSI antibodies? Are you well on carbimazole? Do you track your results & ensure your carbimazole is being adjusted appropriately.  

Doctors focus on TSH, we see many remaining on carbimazole to keep TSH raised and levels too low.

What are your TSH, FT4 & FT3. Also very important to test folate, ferritin, vitamin D and B12.

I set up online access to medical record which is very useful (if offered by practice) if not obtain a print out with lab ranges (ranges vary, so always needed) 

If you undergo RAI theres a strong possibility you’ll be hypothyroid & be on life long replacement.   Doctors view hypothyroidism as easily managed & most are adequately replaced & well and never visit forums for help but a minority are not improved after treatments.  

The risk of cancer from RAI is very low & doctors feel it’s a safer option than not treating because it’s compared to long term carbimazole or surgery. 

There are risks to remaining on carbimazole long term.  The most serious risk 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. I found this article saying the incidence of carbimazole induced agranulocytosis is placed at 0.3–0.6%.

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%. but medics don’t quote low risk, they emphasise the dangers over recommending a permanent treatment.

There is also this video “Is Long-term Antithyroid Use the Best Treatment for Graves Disease?”

youtube.com/watch?v=R6w6eQO...(Not working as expected?)

The doctors are discussing why some patients prefer to stay on long term antithyroid treatment 

@ 8.20 there is reference to long term being 5-10 years

@ 14.30 observational comment about stopping & starting medication & risk of side affects.  

[jnh2 in reply to PurpleNails]

Thank you for posting this video - really interesting

[Bettyheslop]

Hi Red_leaves,I had RAI in 2009 and don't regret it at all. Given the choice again I'd still go for it.

Be a very long story story to tell you everything but basically I was so unwell being overactive and could never come off carbimazole and felt awful the whole time I was on it which was a couple of years. After the RAI obviously I beame underactive which has it challenges and over the years I've sometimes felt great, sometimes found it hard to get balance right and not so good, but for me personally being underactive is far far better than being overactive.

Everyone is so different and what suits one doesn't suit another and we all have different opinions.

You always have option of surgery too, I was given that option but chose RAI. I hope whatever you choose you get on okay with. Take care xx

[Gingernut44]

If you are feeling well on carbimazole, stay on it. I was pushed into having RAI which I deeply regret. I haven’t been well since and the Endo department responsible for pressuring me has done nothing to help. I believe it was a case of getting me off their list and back to primary care (care is the wrong word). It’s the cheapest option for the NHS but not necessarily the best option for the patient.

I am now under the care of a private Endo and self fund T3 as I was refused under NHS. It’s definitely a post code lottery and pot luck if your GP knows how to manage your “acquired” hypothyroidism after RAI.

Tell them you need more time to think about it. I wish I had found this forum before agreeing to it - I would never have swallowed that toxic capsule.

[Red_leaves]

Thank you everyone for your thoughts and comments. Lots of food for thought and I will continue doing my own research before committing to anything. Thank you all!

[NIKEGIRL]

Hi. I am a graves patient and had severe graves. At my worst my t4 was just over 100 range 10-22 and my t3 was 58 range 2.5-6.0. My disease duration was 30 months. I could not tolerate carbimazole and so used PTU. I had one liver elevated event whereby I was unwell but it was short lived and continued with the PTU. I have had a full thyroidectomy in December 2022. I am 10 weeks post surgery. I’m having a few issues converting levothyroxine. I would say if you can have a good quality of life on ATD then that is a good choice. If your quality of life is poor on ATD (mine was terrible it really was) then consider a permanent option. I do not regret the thyroidectomy and in my case it probably saved my life. However it did take me 30 months to decide on surgery. In my experience only you will know what is right for you and you will make a decision when the timing is right or when the quality of life gets so poor you are then forced into making a permanent decision. Sorry that sounds meaner than intended. I guess what I am saying is if ATD has worked for me then I would still be on them but they didn’t so I had to choose. That’s a bit better explained. I hope that helps.

[elderflower2016]

Hi Red_Leaves, I was on Carbimazole for 6 years and have managed to come off it. Towards the end of my treatment, I managed to reduce the dosage down to 5 mg per week. I have been in remission for the past 18 months even if I still had moderately high Trab levels (5 iu/L) when I stopped my meds. I would probably continue with Carbimazole if I relapse at some point in the future.