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.

[pennyannie in reply to Bina-Jane]

You may well ' do better ' on a combination of T3 + T4 synthetic thyroid hormones -

I now self medicate with NDT - I am not sure what treatment options are readily available in Australia :

I had RAI thyroid ablation back in 2005 and became much more ill some 8/10 years later with the consequences of same - though found no help - details on my Profile page -

The most rounded of all I researched - though around 10 years too late for me was that of Elaine Moore's books and website -

web.archive.org/web/2024122...

[Bina-Jane in reply to pennyannie]

Thanks pennyannie. I did read her book and others before making my decision. No-one seems to know about T3 here, I can't even get my levels tested unless the other levels are outside of the limits. I have a new Dr now so I might try again. Apparently it is a "food".

this is the official response :

The Australian Thyroid Foundation Ltd. (ATF) only supports evidence based mainstream medications and does not encourage patients to take any alternative formula of Desiccated Thyroid Extract, such as Armour desiccated preparation nor other compounded Levothyroxine and Triiodothyronine (T4 and T3) combination preparations.

Desiccated Thyroid Extract is imported into Australia. It is produced from dried animal thyroid glands, usually from pig. Patients should be aware of precautions when taking this medication.

The Australian Government - Department of Health - Therapeutic Goods Administration (TGA) do not categorise Desiccated Thyroid Extract as a recommended prescribed medication and is imported into Australia as a food.

The Endocrine Society of Australia does not endorse this formula for treatment of hypothyroidism.

Patient choice to use this formula is the patient’s decision after all known information and education has been evaluated. Quality control certificates are not provided to confirm any variances of product ingredient or dose stability of each batch dispensed.’

[pennyannie in reply to Bina-Jane]

Natural Desiccated Thyroid - Thyroid Extract - is derived from pig thyroids, and is medically graded and follows the exact same rules and regulations as any other company manufacturing and supplying a licensed medicine.

NDT - states content of a measure of T3 and T4 in each tablet/grain -

as do all licensed medicines.

Bovine thyroid gland supplements are not medically graded and sold as an OTC supplement and many people feel improved on this option.

It just hog wash - I haven't grown a curly tail - though faced the same ignorance and dogma and now stay away and buy my own NDT :

Considering NDT was the original and successfully used treatment for hypothyroidism for over 100 years - prior to Big Pharma launching their synthetic options on the back of NDT - it beggars belief -

The issue in the UK is just that it is the most expensive treatment option and now been Black Listed as not available as a ' New patient ' NHS prescription - if you afford to pay to go privately - all treatment options are available.

It is a food for the ' thyroid ' when you haven't got one - I also take adrenal glandular as read RAI is taken up by other glands and organs in the body and I was so ill some years after RAI that I was willing to try anything - and I do know that adrenal glandular helped me - so I also keep that one in my box of tricks !!

[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.

[Mandyj2]

hi LarvaeHarvey08,

I have hyperthyroidism too and the first treatment they offered me was RAI. I felt bullied into making the decision and with help from here demanded Carbimazole. I couldn’t find any evidence as to why there is a 15 to 18 month window with anti-thyroid meds. I suspect it’s a cost issue.

I’ve had many arguments with the endocrinologist about thyroidectomy and denying me Block & Replace too. I’m not a confrontational person but I had to really stand my ground and refuse to stop Carbimazole.

Are your levels under control with the Carbimazole? Mine aren’t so I’ve written requesting Block & Replace including links to Nice/ BTA etc. My Endo initially said I couldn’t have Levothyroxine as it’s dangerous! With the help of my GP I’ve been referred to the Oxford Centre of Excellence, hopefully they are better than my local hospital. Could you do something similar, in writing, using the latest research link that Pennyannie has posted?

Good luck.

[pennyannie in reply to Mandyj2]

and here's another I've just found which is interesting though not a research paper-

There is a lot more research coming out now, favouring longer term Anti Thyroid drug treatment from a patients perspective.

  LarvaeHarvey08

academic.oup.com/jcem/artic...

[LarvaeHarvey08]

Really appreciate that Mandy....what's the name of the Oxford C of E please? More research for me, but your pointer is really useful. Mark