Stopping Carbimazole NZ

[Coulby]

Hi again to all of you...I am having Radioactive Iodine for my Hyperthyroidism with Multi nodular goitre in 3wks (1st of October).I have been told to stop my Carbimazole 2wks before.

Has anyone got any suggestions as to what I should be aware of by stopping them?

Thanks in advance 🌻

[Rainbow-Lover]

Would it be impertinent to ask why you’ve agreed to RAI?

pennyannie

[pennyannie in reply to Rainbow-Lover]

I knew no different back in 2004/5 -

dyslexic and very unwell - I believed what I was told by mainstream medical and given British Thyroid Foundation leaflets at the hospital which simply reinforced what I had been advised.

[Rainbow-Lover in reply to pennyannie]

I know your story - and I’m so very pleased that you’re able to support others when they’re faced with tough decisions about Graves 😉

[pennyannie in reply to Rainbow-Lover]

Thank you :

[Coulby in reply to Rainbow-Lover]

I was told that's what they were doing g basically

[Rainbow-Lover in reply to Coulby]

Did you take part in any discussions about the RAI route? You will ultimately have to sign consent when this is done.

Research as much as can.

[Coulby in reply to Rainbow-Lover]

I was asked a bunch of questions..Can't even remember what they were and yes I signed something.I was so unwell at the time (still unwell)that I probably wasn't paying much attention 😟

[Sparklingsunshine in reply to Coulby]

I've never been hyper so forgive me if this is presumptous but RAI is a rather blunt instrument, a sledgehammer to crack a nut. Its a permanent, rather crude cheap way of killing off your thyroid. And of course its very likely to make you go hypo. I've seen several members who've been through RAI who've regretted it, my MIL is another.

In the UK we've long had the suspicion that RAI is offered to hyper patients because its cheap, quick, minimally invasive in medical terms, ie no surgery required and its cuts the NHS Endo lists down. It seems far more for the convenience of the hospital rather than the well being of the patient.

Obviously that may not be the case in NZ as your health system is different to ours but I would hope other treatment options would have been discussed and offered, like a thyroidectomy, staying on Carbimazole, or block and replace.

I hope your doctors havent pushed you into making a decision that is irreversible whilst you aren't well enough to make an informed choice. I am concerned that you might not be well enough to be making that sort of decision.

Is there any way you could delay it until you feel a bit better and can explore all options? As I said I've never been hyper so probably cant really appreciate how bad you feel but its an important decision that you need to get right.

[Coulby in reply to Sparklingsunshine]

Hmmm...It's been a long wait on the waiting list...I'm not suitable for surgery due to other health problems so it kind of seems to be the only option ?? Thanks for your reply 🪷

[pennyannie]

Hey there again :

Just to answer your question -

By stopping the AT drug you will be stopping the Carbimazole from blocking your own, new, daily thyroid hormone production -

So for those 2 weeks when you will not take the AT drug - your thyroid will start to slowly produce its own, new, daily thyroid hormone production again - as per ' normal ' as the AT drug reduces in its ability to ' block ' thyroid hormones.

I think your T4 was below range at the last blood test you shared so do not see this as an issue and you should be fine for these 2 weeks without any AT medication.

I deeply regret having had RAI thyroid ablation as per my other replies to you on your previous posts -

I believe in NZ all thyroid hormone replacement options are available, synthetic T3 & T4 and Natural Desiccated Thyroid though with some cost differentials.

[Coulby in reply to pennyannie]

Thankyou so much for that, I was getting quite anxious xx