Radioactive iodine

[PeppyPo]

I have overactive thyroid graves disease doctoers or pushing me to have Radioactive iodine treatment i really dont want it i suffer form health anxiety and really really do not want to have this treatment for so many reasons i have done a lot a research on this treatment. Can i refuses there is this one doctoer that really pressuring me

[Silverlady5]

Hi PeppyPo think carefully before agreeing to RAI I had it some years ago after being hyperthyroid and don't feel it was right for me. Don't feel pressurised take your time if it doesn't feel right then wait and see.

Wish I had gone with my gut feeling and not had it but I had no knowledge and didn't have the Internet and the amazing support and knowledge of this site. Good luck hope you can get well with whatever decision you make. X

[PeppyPo in reply to Silverlady5]

I have already made my mind up i really dont want it keep on telling the doctoer that one ear and out the other my husband coming to next appointment with me witch am dreading getting really up set about it

[thyroidnodules in reply to Silverlady5]

this was exactly my experience as well. i was completely in the dark about the thyroid and had no knowledge whatsoever about this 8 years ago. i wish i had taken the time to look into it all before having RAI but the endo said i had no choice.

[galathea in reply to thyroidnodules]

There is always a choice, you can say no. That is a choice. The endo cannot be allowed to bully you!

[PeppyPo]

I have done a lot of research and is highly link to breast cancer and i spoke to 8 out women who develop breasts cancer all had radioactive iodine i have already had 3 non cancers lumps removed form my breast already so scary each time i have to 2 young children really dont wanna risk having the treatment

[PeppyPo]

So sorry to hear that and i hope your doing well

[SlowDragon Administrator]

Many people with Graves’ disease remain on anti thyroid medication for years

Many Graves patients say Elaine Moore’s website is very helpful

[Hidden]

I can agree with the experiences of those with RAI and consequent cancer.

I cannot of course blame my kidney cancer entirely upon RAI or the weakening of my immune system after 8 years on levo without a thyroid gland. All i can say is that if given a second chance I would refuse the RAI and start with NDT immediately after my TT.

The endocrinologist and the radiologist said I would just have to take a couple of pills a day (of levo) and I would be fit and well again.

HA! HA!! HA!!!

They lied to me, my GP told me nothing and currently my CCG has also LIED to me and is currently trying to write its own rules as to why I should not be prescribed NDT after I asked them to supply me with definitive proof of the truth behind the recommendations it is following.

My trust in doctors disappeared years ago. Suggest you use your common sense as to what action is necessary on your part.

[PeppyPo in reply to Hidden]

I am so sorry to hear this how awful you put trust in these doctoer its all about monye now not the care of the patients.

[SlowDragon Administrator]

You may have already seen this study

thyroid.org/patient-thyroid...

And this

eje.bioscientifica.com/view...

[vocalEK in reply to SlowDragon]

Let's just go with the treatment that costs the doctors/insurance companies/government the least and pay no attention to the health and well-being of the patients on said treatment.

[SlowDragon Administrator in reply to vocalEK]

My thoughts exactly

[Ossuryak]

Hi, I also had radioactive iodine in 2012 and would not recommend it. But you need to realise being hyperthyroid you could have a thyroid storm so look into that. There are very strict diets and some people say they can reverse Graves so search the Internet. I thought sarsparilla helped me when I had Graves and I have just been reading about Moringa and it is supposed to stop some of the over conversion of T4 to T3 so that maybe able to keep some of your T3 down as i found high T3 made my heart irregular , you may like to investigate that also. You can have it removed surgically or partially removed if you need it removed . Best of luck.

[Lora7again]

Your Doctor cannot make you have RAI and you can stay on carbimazole for years and you might even go into remission. When I was first diagnosed with hyperthyroid or Graves' disease (My Consultant said I had Graves') I was told I could either have RAI or have my thyroid removed and I refused. I am glad I kept my thyroid because I am now in my second remission. You can read my story on my profile page and it has been a bumpy ride but I don't regret my decision. Just to add a lot of people who have had their thyroid removed or have RAI have not managed to get the proper treatment from the NHS and have been left struggling. I haven't met many who do well on just Levothyroxine after RAI but they would not be on a site like this because they have no need for any help or advice.

[madge1979]

You most certainly can Refuse to have RAI.. it’s your Thyroid Gland 🦋 not your Doctors

I have Graves’ disease since 2014 and was told , after bugging my Doctor for years as to what was wrong with me , that he would arrange RAI for me .. I’d go HYPO and then take a small white pill every day for the rest of my life ... and I’d be “ Fine “ .

Well, I’ve watched just about every female member in my Family , Grandmother , Mother, 3 Sisters, Aunts, Cousins. Nieces ALL struggle with first , HYPER .. then HYPO Auto immune Disease .. 2 of them are in extremely serious conditions because of Thyroid Neglect over many years .

I most certainly did not want to go down that path !

Thank God I did not have Thyroid Cancer or it may have been different!

But I made up my mind to take Carbimazole .. and as the Levels reduced .. to start a regime of Supplementing .

I am Euthyroid now .. only failing once , due to a serious situation .. that was quickly brought under control again with a couple of months of Carbimazole again .. of course, continuing with my Supplements daily .

Graves can be Controlled for many of us .

And you can live your normal life again.

Empower yourself !

it’s great you’re taking your husband with you .. he’s your

Witness !

You will get much more respect by taking him with you .. ( also if you have brain fog it will help remember details )

take a notepad and pen too

You can even record your appointment .. it’s fine to do so .

Be respectful and very firm, telling your doctor what YOU WANT for your

Health .

If you go ahead with RAI. .. and the outcome is not good .. you will likely find yourself cast adrift .. and floundering as you try to put your mind and body back together , unable to get doctors to understand your many associated problems .

Be Brave and learn as much as you can about your Thyroid Gland.

In my mind I could see my Thyroid Gland ... there was nothing wrong with it !

It was being compromised by my Immune System .. and the cause needed to be addressed .

.... so that was what I did !

You can do it too ... Best of Luck

Mx🌹

[BigBrownBear in reply to madge1979]

Hey Madge1979,

What a well thought out response. Well done you, I enjoyed that - !

Kind regards

BigBrownBear

[madge1979 in reply to BigBrownBear]

It’s a pleasure Big Brown Bear 🐻

Knowledge is a treasure .. to be passed on for the benefit of other sufferers .. and I believe when we have taken so much by way of knowledge from the good souls on this site .. that it is our responsibility to come back and share our successful experiences for the benefit of those still seeking answers ...

Should you not still be hibernating in your Den BBB🐻. ?

Wherever you are , I hope you’re warm and Cosy ..🦋 and feeling well and needed.

Luv Mx🌹

[BigBrownBear in reply to madge1979]

Goooood Moooooorning Madge1979 🐻 (that's a big ol' sleepy bear yawn) hehe!

I agree wholeheartedly about sharing knowledge - couldn't say it better myself 👌

You are of course quite right about my wanting to hibernate still - but my partner has a giant shoe horn for levering me out and when that doesn't work, well, biscuits always do the trick 😋

Bless your paws, have a good day xx

[madge1979 in reply to BigBrownBear]

Haha .. 🐻

You may not be feeling as well as you should be Big Brown Bear 🐻

.. but no one can take away that Huge Indomitable attitude of yours ..

.. just let them try it ...... Gggrrr..

Go .. eat some biscuits and do the

Day !

Love Madge x🌹

[Gingernut44]

Think very carefully about RAI - if I knew then what I know now I wouldn’t have had it. I was pushed from the outset to have RAI and I deeply regret it. Levo doesn’t do it for me and I’ve been left to get on with it so trying to find a suitable way to self medicate- not very successfully at the moment

[bantam12]

I had RAI around 16 years ago, had no problems with it then or now, just relief at not being hyper anymore and actually being hyper for many many years left me with heart problems so I wish I had done it sooner.

[thirstymom53 in reply to bantam12]

That’s me right now I just had my rai treatment 2 days ago but I can already see the difference my dose was 15 mic of i131

[lilacbunny]

I was hypo and then went hyper and told I would need RAI and then my thyroid removed and that was basically the only form of treatment. I just knew this was wrong and so had acupuncture. My thyroid settled down and I felt well for a few years and was so glad I didn't do it. I would never do anything so drastic as I think you would become too imbalanced and that's what it seems to be about. You can hear what your body is telling you. Good luck with it all. You are taking control of your health and that is great!

[Chippysue]

Gut instinct is so powerful!

Listen to it.

Being radioactive just dies t make sense to me! I don’t know anyone who is pleased to have it.

There are better ways to get well that are gentler on your body!

Would these doctors have it? I doubt it

[Razzydaz]

I had RAI done in 2010 after Graves in 2003. I wish I had known then about a change of diet, lifestyle to what I know now. The more natural the food you eat the less strain it puts on your thyroid which is already working overtime being hyper. Definitely no processed foods, or sugar (some say gluten free and dairy free if you can) anything that makes your thyroid work too hard to process, it needs to calm down. de stress, just sit relax, be lazy whenever possible don't keep pushing yourself to carry on. I read a study that the quality of life is worse 6-10yrs after RAI compared to antithyroid drug and total removal. I can only go on what's happened to me, and it is not a normal life I am living. 7 yrs after RAI my life changed dramatically (3 yrs ago) the Levo stopped converting into enough T3 to get me through a day. Each day is a struggle, the worst being that my body starts to shut down. I wonder if the RAI has impaired my liver which you need in good condition to convert T4 into enough T3 into your cells. One of the worse things other than terrible symptoms is the lack of knowledge in the medical world, in fact it is scary! I wish you all the best in whatever you decide.

[pennyannie]

Hello again PeppyPo

I hope the Anti Thyroid drugs have now blocked your thyroid hormone production, and your levels of T3 and t4 have reduced, and the symptoms experienced less challenging.

It's been a tough time for you, and trust the AT drug you are now on has less side effects.

Graves is an auto immune disease that attacks the thyroid : and it is because the thyroid is such a major, important gland, that the symptoms experienced are considered ' life threatening ' .

Your thyroid is not the cause - but the victim of an attack by your own immune system.

Why your immune system has decided to attack your thyroid is the question - but the NHS do not know how to control, adjust, or modify your immune system.

What the NHS can do is block the thyroid production with the AT drugs - this is generally considered the first line of treatment for around 15-18 months with the hope being your immune system ' dies down ' and your thyroid comes back into a natural rhythm and you go into ' remission ' :

There are very many people with Graves who stay on a low dose of the AT drugs long term :

Finding the right balance of AT drugs can take time and a skilled endocrinologist .

It seems to me the NHS is target driven to reduce outpatients waiting times, rather than patient focused as to the appropriate treatment for each individual.

After your treatment on AT drugs the NHS recommends RAI as their treatment of choice. This is their treatment of choice but is not necessarily in your best interests.

These are the guidelines the NHS work to, so if you want your salary you follow the rules and regulations.

You have done your research and you do not need to accept the RAI :

It sounds so simple doesn't it ?

Just have a little drink, go home, and self isolate few a few days.

RAI is toxic waste that slowly burns out your thyroid in situ :

RAI is also taken up, to a lesser extent by other glands and organs within your body :

Research into the longer term consequences of RAI treatment are still a work in progress, and read the repercussions of this barbaric treatment may take some 30-40 years.

The other option of course, is to have your throat slit open and your thyroid removed.

So neither choice is ideal, especially since your thyroid is not the cause of your illness.

I hope you found the Elaine Moore Graves Disease website as previously recommended.

I know it's a massive learning curve, and when not well it is hard to take time out to read and understand all the research and medical terminology.

Professor Toft the eminent endocrinologist, on retirement wrote a very interesting article :

Thyroid Hormone Replacement - A Counterblast To Guidelines :

December 2017 Journal of the Royal College of Physicians Edinburgh :

In which he states :

" 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 131 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism. "

The full article is on this amazing website somewhere ( sorry, I'm not good on computers and don't know how to find it for you ) wherein he also questions the current NHS policy on thyroid hormone replacement which leaves many thyroid patients very unwell.

I was diagnosed with Graves in 2003 and had RAI in 2005 : becoming very unwell some 8 years later and found no help nor understanding with my disabling symptoms and referred to as a conundrum by my doctor.

I now manage lingering Graves, thyroid eye disease - exacerbated by the RAI and hypothyroidism.

I deeply regret this treatment, but was given no treatment options as I believe my age at 56 dictated my fate as at my very first hospital appointment I was told I was to have RAI the following year and then I'd be better ????

I am now self medicating buying my own full spectrum thyroid hormone replacement and getting better by myself as the current guidelines the NHS work to are not fit for purpose.

[Mugs19]

Don’t is my strong advice. You must be in agreement with any treatment offered or they aren’t supposed to do it. I wish I hadn’t let them pressure me into having it as I am much worse off

[glo42]

Please don't feel intimidated by this bully of a Doctor. I was in the same situation in 2011 and left the hospital clinic appointments in floods of tears several times because I wasn't listened to. I spoke to my GP and was reassured that if I chose not to have either RAI or surgery for my overactive thyroid condition (no mention ever of Graves), that I would still be given the medication I needed.

Stick to your gut reaction and remind the Doctor that it is your thyroid and that you're not happy to have RAI or surgery.

I am one of the fortunate ones who manage without too many nasty side effect on Carbimazole.

Good luck at your next appointment. Keep thinking in a positive way and keep say NO!!

[Batty1]

Sorry butting in: Scrumbler can you please go into detail of the issues you had and the baggage RAI brought with it ? I'm being pressured to have RAI do to possible lymph node cancer spread from stupid thyroid cancer. I don't want to do it either because thyroidectomy destroyed my health and riddled with psoriatic arthritis that makes functioning a challenge.

[Stanleydoggy]

I think you should take your time. I was put under pressure for years until it became almost impossible to refuse in the end. I guess you have to weigh up the pros and cons. I had the treatment 18 months ago after being told I was heading for heart problems.

[Badsideeffects]

Everybody is so brave on this site. I don’t believe I have any of this problem but I can hardly believe how much you guys push forward and keep fighting for good health. Doctors are in it for the money. Don’t trust them! Stick to your gut

[cazmania7]

Nine months after having RAI I became unwell. Been sick since. Try to keep your thyroid.

[jude44]

Don't take it refuse. I was pushed to take it and now I regret it. Please dont take it.