Hyperthyroidism drugs. Why only 18 months?

[LarvaeHarvey08]

Can anyone explain why hyperthyroidism drugs can only be taken for 18 months before the drastic radio iodine or surgery options? Thanks

[pennyannie]

Hello LarvaeHarvey and welcome to the forum :

The most recent research we have is suggesting that the longer the patient stays on the Anti Thyroid drug the better the longer term outlook for the patient.

pubmed.ncbi.nlm.nih.gov/338...

In the UK Anti Thyroid drugs - either Carbimazole or Propylthiouracil - PTU - are generally prescribed when there is a diagnosis of Graves Disease -

and it would seem the NHS believe remission, if it is to be found will happen within around a 15-18 month time frame and hospital guidelines need to be followed - and currently with O/P waiting times growing rather than reducing I am sure there is encouragement and incentive to process people as quickly as possible.

If with Graves we are looking at an Auto Immune Disease that may wax and wane throughout ones life and Graves is poorly understood and badly treated by mainstream medical.

Some people do find remission within this time frame, whilst others are encouraged to have definitive treatment, either RAI thyroid ablation or a thyroidectomy -

which is like being between a rock and a hard place - ingest a toxic substance or have your throat slit open - and in my experience information on RAI very limited and biased -

and I believe the vast majority of patients , knowing what we know now, would choose to stay long term on an AT drug.

However there will be some patients who will need definitive treatment and I believe RAI should be removed as a treatment option in what we perceive to be a health care setting.

ncbi.nlm.nih.gov/pubmed/306...

I think the standard of care managing patients on the AT drug varies greatly depending on the skill set of the team working within the endocrinology department - and the name of the game, keep patients moving through the system in the most cost effective way.

[Bina-Jane in reply to pennyannie]

I was on carbimazole for nearly 6 years with several stretches of euthyroidism.. Unfortunately I ended up having RAI after a couple of bad relapses and am now struggling with getting an optimal dose of thyroxine. It took over 3 years for my thyroid to "burn out". I was refused block and replace (Australia) and was hoping that the dose of RAI would leave my with partial thyroid function but I was told the dose would destroy my thyroid within a month or so. Apparently not. I was being treated by an associate professor. Sadly the uni graduates are taught to recommend RAI pretty well straight away but my endo at least allowed me to try carbimazole for longer than recommended. Sadly In hindsight I wish I had treated my condition straight away instead of now 12 years of hell. I should have sucked it up and had surgery.

[Fruitandnutcase]

Right from the beginning of my treatment I’vewas always being offered RAI should my block and replace treatment fail and I always said ‘No thanks’. One door even held her hand up with an imaginary pill between her thumb and finger to show me what a little pill it was 🤣 and told me my thyroid wouldn’t become under-active. I still declined her offer.

In the end after I was discharged I went to see my GP to ask if they could force me to have RAI and could they refuse to treat me if I refused and the answer to both questions was ‘No’. So unless there was a very good reason for needing a TT I would not consider destroying my thyroid gland.

I didn’t ever feel that I could rely on my GP to treat me well enough to keep me feeling tea ally well and I also felt very well on my block and replace treatment.

It seems to me to be a way of endocrinology clearing their patient list because once you have either RAI or a TT then you are off their list and back to the tender mercy of your GP who may or may not be able to keep you in tip top condition.

My treatment lasted for exactly a year which was how long I was told it would take but I think now people may stay on carb for longer but if you read around you will find people who are taking carbimazole for much longer periods of time. Think just don’t get pushed into anything yu are not sure about. On the other hand I felt really well when being treated with block and replace.

Good luck with it all, just don’t let anyone push you into doing anything yu aren’t completely happy about.