Advice needed on Radio-Active iodine Therapy - Thyroid UK

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Advice needed on Radio-Active iodine Therapy

corena7 profile image
8 Replies

I was diagnosed with an overactive thyroid and Graves in 2010. I take Carbimazole a 5mg tablet and 7.5mg on alternate days, without any side affects. My last blood test was in October, results as follows; TSH 0.14 mu/l 0.3-5.0 FreeT3 6.1 pmol 3.8-6.0 FreeT4 12.1 pmol 8.4-19.1 I have an appointment with a consultant Thursday 2/11 who is keen for me to have Radio-active iodine therapy. I have read that it could activate my Graves . My question is; based on my recent results do I need this Therapy? Please I need advice.

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corena7
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8 Replies
Clutter profile image
Clutter

Corena7,

If you are comfortable taking Carbimazole you don't have to agree to RAI or thyroidectomy. Recent research has shown it is fine to take Carbimazole for years, decades even, because any adverse effects are likely to occur during the first 90 days of taking it. ncbi.nlm.nih.gov/pubmed/286...

FT3 6.1 is mildly over range so you might need Carbimazole dose increased to 7.5mg x 2 days and 5mg on the third day. TSH 0.14 is no longer suppressed but is still below range. FT4 is less than mid range.

If you have thyroid eye disease RAI can make it worse and if you didn't want to continue on Carbimazole thyroidectomy might be a better option.

corena7 profile image
corena7 in reply toClutter

Thank you so much for your reply Clutter. Ready now to meet my new endo.

anjuliet profile image
anjuliet

Don't have RAI. It is one of my biggest regrets in my life, ever.

corena7 profile image
corena7 in reply toanjuliet

Thank you for your reply anjuliet. Why do you regret having the RAI?

anjuliet profile image
anjuliet in reply tocorena7

More health problems than you could ever imagine, but we are all different, so it is up to you in the end to make an important health decision like this.

I had no choice back then as I ended up being hospitalised for tachycardia (185bpm) and my Graves and hyperthyroidism were out of control at that point. Got thrown out and did not have anyone to turn to, so basically had to make my own decision. I was 22 at the time.

I agree with Jacs, make sure you do a thorough research first. Wish there were information back then or helpful doctors. All I got was, "You will take a pill for the rest of your life."

corena7 profile image
corena7 in reply toanjuliet

Sorry to read about your experience, I have done some research, but think I have decided already NOT to have Rai Thank you for your reply.

Jacs profile image
Jacs

my daughter had RAI aged 19 - worst decision ever 😢

I'm sure some would disagree so my advice is to research thoroughly & make an informed decision on the likely outcome vs your current symptoms

good luck

corena7 profile image
corena7 in reply toJacs

thank you Jac

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