Has anyone refused RAI OR SURGERY : Was wondering... - Thyroid UK

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Has anyone refused RAI OR SURGERY

samira1
samira1

Was wondering if anyone refused RAI or surgery treatments for Graves' disease after medication? How would you speak to your endo without being rude?

Appointment is next month!!! 23 years old, yet I am stuck worrying about this!!!

10 Replies
oldestnewest

One of my work colleagues refused both RAI and surgery. Diagnosed over five years ago, she is still on carbimazole, and seems fine.

Be polite, but firm and ready to say why.

I second ansteynomad

If you're unsure - refuse, don't do it.

Going hypo after is no fun and there isn't much support, help and understanding for hypo people.

Think twice or even three time before you go for op or RAI.

Good luck

shaws
shawsAdministrator

Welcome to our forum,

I cannot answer your question as I am hypothyroid but those who have Graves will respond when they read your question. I think if you edit your headline to include Graves so it will draw those who have it to read your post. To do this, click the down arrow along from ' Follow post ' and select Edit and add Graves.

I had surgery and RAI and was happy to be shot of the Graves relapses and constant messing with Carb doses.

Valarian
Valarian in reply to bantam12

Thanks for this Bantam - it’s good to hear the other side of the story. The problem is, a lot of people who are happy with their treatment just drift away, so we never hear their view.

bantam12
bantam12 in reply to Valarian

My sister had surgery about 40 years ago and has never had any problems since then. I had a partial op around the same time but then Graves returned so I had RAI, both my sister and I do very well on Levo.

SlowDragon
SlowDragonAdministrator

You might find this article useful

Prof Toft - article just published. Towards the end he discusses patients eligible for RAI

rcpe.ac.uk/sites/default/fi...

Samira1,

If you are comfortable on Carbimazole tell your doctors you wish to continue taking it and do not consent to RAI or thyroidectomy which will almost certainly make you hypothyroid. It is safe to take Carbimazole long term. ncbi.nlm.nih.gov/pubmed/286...

I’m still hoping for remission, but my consultant mentioned options for if that doesn’t work out a while back, and I said that all things being equal, if I was ok on carbi, I’d prefer to keep my thyroid. He sounded interested, but not negative. .

The way I look at it, I can always change my mind and have RAI if it’s too difficult to keep my thyroid under control, or if the side effects become an issue, but once you’ve had surgery or rai, there is no going back.

The younger you are (I’m 60), the more important I think this is - if you’re in your 20s, they might have better treatment options by the time you are my age (it’s about time !)

Take a friend or family member with you if you’re worried, and sit down and make a list of your reasons for refusal, and the pros and cons of each treatment.RAI or surgery, before you go - just to get your thoughts in line.

Bottom line - they can’t force you to have rai or surgery, but there will be times when it is the best option

I refused both RAI and surgery and asked to stay on the Carbimazole, titrating down to see if I could achieve remission.

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