Refusing RAI

[PurpleNails]

I’m interested in hearing about people’s experience of refusing RAI. What doctors have said to convince them to undergo it, and how they have responded to being challenged.

[Lalatoot]

I accepted RAI after 2 relapses of hyper. The main reason was that I never felt right and my bloods weren't balanced so I reckoned I had more chance of health if I was hypo. The other reason was that I wanted to work with the endo who was a lot better than the previous 2 I had had. She recommended it and I felt that by working together we could improve my condition.

[PurpleNails Administrator in reply to Lalatoot]

Thanks for your reply. I have a toxic nodule so as the cause is not autoimmune there is no question of remission / relapse in my case. I feel staying carbimazole while I’m stable is right even though I know it Is permanently.

[Cassandra]

I had RAI 17 years ago and to be honest my thyroid still didn’t settle and I’ve had lots of problems - I don’t know what a consultants attitude would be today but my reluctance was met with - “oh so you’re looking to die then”. I feel I was badgered into treatment which I still don’t think was the answer to my problems. Maybe for you it would be the right treatment but there are no guarantees. Good luck with your decision.

[PurpleNails Administrator in reply to Cassandra]

Thanks for your reply. What a horrible doctor to say that!

[wanttobenormalnow]

I refused it when i was diagnosed with Graves 28 years ago. I chose to do the block and replace. Have been hypo since the completion of treatment. Endo recommended RAI, but was o.k. with going the other route

[PurpleNails Administrator in reply to wanttobenormalnow]

Thanks for your reply. I don’t have Graves so would have to remain on carbimazole. If my levels were unstable I might feel differently.

[Donna5658]

Check out the thyroid issues website of Elaine Moore. She is a former science writer and is extremely knowledgeable about this topic. She had RAI, as did I, many yeas ago and has numerous suggestions for how to avoid having to resort to this.

[PurpleNails Administrator in reply to Donna5658]

Thanks for your reply. I have a toxic nodule not Graves but I’ve read articles and information from the site before and found it useful.

[pennyannie]

Hey there PurpleNails

I was diagnosed with Graves Disease in 2003 and initially medicated with anti thyroid medication, but told I couldn't stay on these long term and would be having RAI in approximately 15-18 months time.

I was well on the anti thyroid medications.

I wasn't given any other treatment options.

I was totally compliant with the hospital doctors - as I knew no different.

I deeply regret this treatment.

More details are on my profile page and the various posts I have replied to :

[PurpleNails Administrator in reply to pennyannie]

Thank you for your reply. I wasn’t given treatment options either. I was just sent a consent form for RAI treatment with a minimal 2 minute phone call saying RAI Is the plan and information would be sent with consent form. No information was Included. I phoned the hospital and ended up speaking to nuclear medicine department. I wasn’t happy that It was expected I accept safety instructions given on the day of the appointment. This was last year and I didn’t agree for a number of reasons. Fortunately have been quite stable on carbimazole.

I have a consultant appointment soon and I know they will try and pressure me to have RAI again.

[pennyannie in reply to PurpleNails]

I know, it's a horrible position to be in.

I picked up two leaflets from the hospital general office : one from the BTA on Graves Disease printed on bright red paper with black writing and the other leaflet from the TED. charity printed on normal white paper. This was back in 2004/5, and I still have them.

The leaflets are total bias in favour of RAI - treatment options are not suggested and the leaflets are misleading - I just hope these are no longer in circulation.

Your situation is different as you are dealing with a toxic nodule, but I think if you can manage on the anti thyroid medication and are pretty well stable, why not stay put ? Either way, you'll be on medication for the rest of your life anyway.

Is your doctor supportive of you ?

I think NHS staff are pressured into move people through the system as quickly as possible.

Needing to stay on anti thyroid medication long term may cost the NHS more than the drastic action now recommended.

The NHS follow the guidelines, and the guidelines say :- RAI is the recommended treatment option -

You have received some good replies, and it seems the NHS have to accept your wishes and that if you wish to stay put on the Carbimazole you should be allowed to.

Professor Toft the eminent endocrinologist, and past President of the BTA - wrote an article in 2017 Thyroid Hormone Replacement - A Counterblast To Guidelines and is suggesting Graves Disease patients stay on anti thyroid drugs long term.

I believe this was his " swansong " before retirement from the NHS.

I know you aren't with these health issues but long term treatment with AT drugs seems to be the way forward for some, so the fear mongering around long term use of AT drugs is possibly another questionable NHS dogma.

There are probably many hundred and thousands of people who have had this treatment, but they wont be on here, as they are well and getting on their lives - a small % fall through the gap, I believe I am one of these, but the NHS isn't concerned as it's a game of % anyway.

[PurpleNails Administrator in reply to pennyannie]

I agree with everything you said here.

I picked up two leaflets from the hospital general office : one from the BTA on Graves Disease printed on bright red paper with black writing and the other leaflet from the TED.

I was given 2 BTF leaflets, 1 on thyroid nodule and swellings & 1 guide to radioactive iodine. It was last revised 2015, I looked up the current one on its website, it is portrayed positively.

Is your doctor supportive of you ?

I’ve had 2 hospital appointments and they have pushed RAI both times. As for GP any symptoms I do have are put down to being thyroid related. The GP tells to contact the hospital directly myself. The hospital checks my thyroid levels which are ok and nothing else is done.

[Graves1234]

Hi PurpleNails

I was diagnosed Graves in 2014 and recommended RAI after a second relapse. The reason for RAI given as a better option was that it was Quick, Painless and easy to manage the thyroid after if I became Hypo which is generally likely but not always the case.. I was hoping not always the case and it would just sort my thyroid.. I became Hypo.. I also regret taking the RAI now and wish I had gone with the surgery to remove the thyroid.

It’s a decision you will need to make but make sure you know all the factors benefits versus risks..

[PurpleNails Administrator in reply to Graves1234]

Thanks for the reply. I don’t have Graves, I have a toxic nodule. So my level are fairly stable with carbimazole treatment but there no possibility or remission or relapse which can happens with Graves. I’m looking at permanently taking carbimazole. At the last appointment the doctor made reference to leaving it too long, then I’ll need treatment but will have to wait much longer? I wasn’t really given the opportunity to get more information on what this meant.

[madge1979]

I was diagnosed with Graves’ disease in 2014 .. my doctor told me .. don’t worry .. we can give you RAI and burn out your Thyroid 😱 ...... or ... if that doesn’t work ...remove it with Surgery .

I was horrified

as I knew that my Thyroid Gland was not diseased.

I decided on my own, that I would keep it healthy and address my Immune System .

My doctor laughed and said .. “Good Luck with that” !

So , with a determined attitude , I started to learn everything I could about what a healthy immune system and a healthy Thyroid Gland needs , to become well balanced again .

I became Euthyroid after about 4 months of using Carbimazole and felt wonderful except for lingering joint and muscle pain.

Which I addressed with L Carnitine .

I then used a regime of supplementing with the best I could find.

I had a relapse in March 2019 ... after a very traumatic incident, but quickly got back to Euthyroid after a few weeks on Carbimazole ... I feel great again .

I continue now with my Supplementing and still take L Carnitine 🙏. Which I have great Faith in ..

It can be done !

My whole Family ( women ) including my

Grandmother , Mother, Sisters, Aunts, cousins , Nieces have one Thyroid Disease or Another .. my Sister is in severe bad health with neglected Hypothyroidism until she fought with her GP to increase her Levothyroxine, as was my Cousin , who had surgery to remove her Thyroid , she was then given low lose Thyroxine , which was never changed or increased in over 40 years

I believe we should Empower ourselves and if necessary treat ourselves too .. it’s our body .. not our Doctors . He is there to help and advise us . My doctor told me recently I know much more about the Thyroid than HE does !

If we educate ourselves as much as we can on the subject , then we can decide ourselves what we want to do and respectfully ask our Doctor to go along with us in a plan ... a plan that leads to better health.

My Doctor allows me to have my bloods taken every month for which I am very Grateful. I take a copy of the results every time for my own file , I can look back my file from 2014 and see how I’m doing and use that as a guideline in my supplementing .

I enjoy being Euthyroid... I would like to stay that way ....and I’m absolutely sure I can too .

But only by ... learning how to 🤗

Best of luck

Luv Madge x🌹

[PurpleNails Administrator in reply to madge1979]

Thanks for the reply. I don’t have Graves, I have a toxic nodule. So my level are fairly stable with carbimazole treatment but there no possibility or remission or relapse which can happens with Graves. I will look into using L Carnitine.

[thyroidnodules]

i had RAI 7 years ago and was reluctant to take it. the endo at the hospital said if i didnt take it, there was a strong possibility i could have a stroke or heart attack and die. i hadnt done a lot of research at the time and he frightened me into doing it. I had nodules in my neck {three} one of which was very prominent and which was causing the hyperthyroidism. i was also feeling terrible - lost lots of muscle tone, no energy and felt generally awful. i have to say though eventually i did feel better but then became hypo which presented its own problems. the other two nodules were left alone until one of them started growing and they wanted to do surgery to remove it. i refused and joined this forum and started supplementing and taking NDT {levo did nothing form me except make me gain lots of weight}. i was attending hospital regularly to monitor the growth of the other nodule. it then started to shrink and they said i didnt now require surgery and the hospital appointments are less and less, (every three years) and if still okay, then i dont have to come back. i cant say RAI had an adverse effect on me and probably was for the best because i had problematic nodules and didnt want to have surgery However, I wish i knew then what i know now and maybe my choice would have been different. good luck

[PurpleNails Administrator in reply to thyroidnodules]

Thanks for your reply. I have a solitary toxic nodule. My symptoms have not been severe and my levels have been fairly stable on carbimazole, which is why I’m opposed to RAI. Although permanently remaining on carbimazole not ideal either.

[holyshedballs]

In addition to the good advice in the replies, read the General Medical Council's Consent: patients and doctors making decisions together

gmc-uk.org/ethical-guidance...

This sets out the manner in which a patient and a doctor arrive at a decision together.

The crucial paragraphs are is 5b and 5c:

5b

"The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice".

This hinges on the doctor having as much knowledge about thyroid as is on this forum. As we know, unfortunately a lot of doctors don't have this knowledge. This is where the very important phrase "the patient’s views and understanding of their condition" comes into play. In other words the doctor must listen to you. S/he may want to dismiss you or your information, but the Supreme Court in Montgomery v Lanarkshire Health Board 2015 supremecourt.uk/cases/uksc-... said that patient support groups are a medium to obtain information about symptoms, investigations, treatment options, risks and side-effects at paragraph 76 of the written judgement.

5c

"The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all".

The key sentence here is "The patient decides whether to accept any of the options and, if so, which one."

In summary, you don't have to have RAI if you don't want it.

If you can provide sufficient information you should be able to persuade your doctor to institute an alternative form of treatment if that is what you want and you have the logical evidence to support it.

[PurpleNails Administrator in reply to holyshedballs]

Thanks very much for your reply, really useful reference.

[Sweeneythyca]

I had a TT last jan due to multinodular papillary cancer, it was classed as stage 2 as there was lymph involvement so i was/am a candidate for RAI. Prior to surgery i already decided i wouldn't do the RAI for many reasons. My last 2 oncology appts have been focused on what i consider badgering me to do it.... they want to wipe out any remaining thyroid cells just in case .

I have done tons of research and i am willing to take my chances without too much further medical intervention, i am suffering greatly with the after effects of surgery, complications from the surgery, not having a thyroid, blasted medication, inefective thyroid treatment from endocrinologist etc.

You are the ultimate decision maker with regards to your health.

they can't make you do anything although they use a one size fits all methodology to treat people, that doesn't always work.

My cancer specialist has written to my gp twice about our appts and has stated she will see me again in feb to further discus RAI, but she also said that it is my decision, they can only advise based on clinical findings...

Best luck to you and whatever you decide.

[PurpleNails Administrator in reply to Sweeneythyca]

Thanks for your reply. How are you doing now? I have a consultant appointment soon and i’m a little worried they will try and badger me to have RAI again. But you are right it’s my decision.

[Sweeneythyca in reply to PurpleNails]

I'm ok, i will see what they say at my next appt but i am standing steadfast and believe it is right for me. It really depends on your circumstances but for me the treatment and possible side effects are not worth it.... they found a 3mm 'granuloma' in situ of thyroid bed at last ultrasound and that has got them all hot under the collar...lol i am a great believer in the body healing itself and regret falling under pressure for the thyroidectomy in the first place as histopathology after surgery showed all tumours/nodules had shrunk or disapeared within previous 2 months as i was following a strict cancer protocol to heal naturally... I'm still angry about it but using that knowledge to fight on. All the best x

[Batty1]

In November I did a whole body radioactive iodine scan for thyroid cancer recurrence that showed recurrence and then I recieved a phone call from my intern Endo who left a message saying it looks like you have recurrence and then 2 days later he called me again to say him and the Nuclear medicine doctor got together and decided that you don't have recurrence but wanted me to do RAI just in case "I refused" and requested a 2nd opnion since thyroidectomy has cause a laundry list of problems that Endo could care less about I can only imagine if I did RAI for just in case scenario.

RAI comes with its own set of issues lots of people talk about salivary gland problems and dental (No experience). You gotta do what's right for you and your health and if your unsure seek a second opinion.

[PurpleNails Administrator in reply to Batty1]

Thanks for your reply. How are you doing now?

[Batty1 in reply to PurpleNails]

I’m doing good and I’m scheduled to have my second opinion on the 5th of February at John Hopkins Hospital.

This Endo I’m seeing only Specializes in thyroid diseases and thyroid cancer (no diabetes) I will see if I like him and if I do I will try to see him 2 or 3xs a year for care I’m honestly so over dealing with thyroid disease and all the baggage that came with it, I just want to get my health back and want to move forward. These past 3yrs I have felt like my life just was stuck on rewind.

[PurpleNails Administrator in reply to Batty1]

I hope your appointment goes well.

[humanbean]

I have no experience of hyperthyroidism, but there are plenty of people on the forum who have. Quite a few people have refused to have their thyroid removed and refused RAI. Many of them do well on anti-thyroid drugs like carbimazole or PTU, and stay on them long-term or even permanently. Some of them go into remission long-term.

Your doctors (either GPs or hospital consultants) can't refuse you anti-thyroid drugs if you choose not to have RAI or get your thyroid removed. (I'm talking from a UK perspective, I don't know the situation elsewhere.)

There are quite a few reasons why people become hyperthyroid, and the safety of your various options in different circumstances is something I know nothing about. The Elaine Moore website is a very helpful one :

elaine-moore.com/

Note that some people who have been told they have hyperthyroidism have antibodies normally associated with Hashimoto's Thyroiditis which leads to people eventually becoming hypothyroid, but often they go through a phase with high levels of thyroid hormones first. Doctors sometimes tell people they have Graves' Disease purely on the basis of the levels of their TSH and Free T4 without ever confirming the Graves'.

The mechanism producing high levels of thyroid hormones in Graves' Disease is completely different from the mechanism producing high levels of thyroid hormones in Hashimoto's Thyroiditis. And the long-term outcome of each one is different too. Before making any decisions about anything you really need to get copies of all the thyroid-related tests you've had done by both your GP and your endo. You can then decide what you might be able to do to change your future, just like madge1979 has done.

[PurpleNails Administrator in reply to humanbean]

Thanks for your reply. I have a toxic nodule so I am facing remaining on carbimazole permanently, without possibility of remission or relapse. It good to know they can’t stop carbimazole.

[Lora7again]

I just said no and that was it and I am glad I still have my thyroid because I am on my second remission now.

[PurpleNails Administrator in reply to Lora7again]

Thank you for your reply. I have a hospital consult soon, I’m sure they will try and get me to agree to treatment, I have read, on here, as the patient is refusing the recommend treatment they are discharged back to GP. I’d be happy for my GP to prescribe and reviewing carbimazole treatment if they monitor me frequently and not freak at my 0.01 TSH, but this likely wouldn’t be the case.