Thyroid UK
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Hyperthyroidism- Radioactive Iodine is this the only option??

Hi Everyone,

I'm looking for opinions and facts or just some good old fashion advise!

I was diagnosed with an over active thyroid about 4 years ago and after 6 months of a daily dose of 5mg Carbimazole it seemed to get it back under control.

At the end of last year, I felt my symptoms coming back and yes the overactive thyroid was back.

February I started on 5mg Carbimazole, April increased to 10mg and last week moved on to 20mg.

My current levels:

T4 34 NMOL/PMOL

T3 12 NMOL

TSH 0.02

The doctors is saying if these levels don't improved by October, I need to look at the Radioactive Iodine treatment.

I don't really fancy the Radioactive Iodine as I have three young children and I don't fancy having to have to take a daily tablet for the rest of my life.

My questions really is - Does anyone know any or alternative treatments or is this really my only option?

Thank you in advance.

7 Replies
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The first comment : Nobody can force you to take any treatment at all.

If you are offered RAI - Radioactive Iodine - you can refuse, and if you do you cannot be deprived of treatment (such as carbimazole) for your overactive thyroid.

If you decide that the overactive thyroid has to go, then another option is surgery to remove your thyroid, but that has all the dangers of any anaesthetic and surgery.

But if taking carbimazole doesn't bother you, and as long as you don't have a goitre blocking your windpipe or making swallowing difficult, and assuming cancer isn't a problem, I'd suggest hanging on to your thyroid if at all possible. Being hypothyroid isn't fun, doctors don't take it seriously, and getting adequate thyroid hormones of the right type and the right dose for you is practically impossible in many cases, particularly now that so many CCGs have banned T3.

There is another treatment for overactive thyroid - something called PTU - and it is given to people who can't tolerate carbimazole. I don't know what the pros and cons of PTU are and whether there are any other reasons for switching to it.

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Whichever way you go you are likely to be taking a tablet for the rest of your days, if you choose not to have surgery or RAI you will probably be on Carb on and off as once you relapse it's likely to happen again and again.

I had RAI when my three were little, youngest was around 4 years old I think, it was manageable, I still did everything as normal but followed the arms length rule for 2 weeks. I also had partial surgery prior to that.

I had Graves on and off for 30 odd years and got totally fed up with it, wish I had done RAI sooner.

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Hi, I have read on this forum a Post by Kateeliza 3 years ago of laser ablation. You need to be cancer free and level 2. The London Endocrine centre perhaps may have more information. I will probably be interested in this if I have problems with carbimazole late on.

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You might find the information on this site interesting reading - scroll down to hyperthyroidism:

healyourselfathome.com/HEAL...

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Thank you all for your comments, I really appreciate them.

Not sure which route to take but I'm definitely going to look into the options suggested.

I've spoken to a nutritional therapist and she has said that life style choices i.e. diet may be able to get my thyroid back down to normal levels, has anyone heard or tired this route before?

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Having a good diet can only help you. If the cause of your hyperthyroidism is auto-immune (i.e. you have Graves' disease), then there are diets that are recommended. Read about diets for autoimmune conditions.

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Hi.

I have Graves' disease.

I had Radioactive iodine treatment in April 16. Am still trying to get some sense of normality back

I regret having it done. I regret it every day. I'm now on 175mcg levothyroxine and still struggling.

Am fed up of trying to get the GP and endo to acknowledge T3

For me RAI treatment was a big mistake.

Think very carefully before doing anything

Hang on to your thyroid for as long as you can.

Good luck

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