THANK YOU

[Sabu1]

WOW! I am going to have to read all your responses carefully as it is all quite overwhelming. Thank you so much for your support and guidance. Many years i have just gone with over/under diagnosis and just keep altering my tablets as advised by doctor. Well! Enough. Your knowledge and support will now help me het sorted. So, im off to re-read your posts. Thanks

[shaws Administrator]

You're welcome and so many on this forum have had struggles with either remaining undiagnosed or seeing doctors or endos who have little or no knowledge, except for the TSH and T4 (or FT4). I doubt they know what an Active thyroid hormone is but slowly, slowly we can get well by educating ourselves and reading and asking questions.

Once upon a time, before the introduction of levothyroxine (an inactive - or storage hormone ) we were prescribed NDT. NDT means Natural Dessicated Thyroid Hormones from either pigs or cows thyroid glands. They contain all of the hormones a healthy gland would produce, T4, T3, T2, T1 and calcitonin. In the UK they stopped prescribing it and recently withdrew T3 (due to cost). NDT was the very first replacement hormone that enabled people to have a long and symptom-free life it was called a 'grandfathered' replacement.

Big pharma then wanted part of the remuneration so, slowly, slowly through monetary rewards to doctors/endocrinologists it has slowly swung round that nowadays only levothyroxine is prescribed. Levothyroxine seems to suit a lot of hypothyroid patients but they wont be on the internet looking for answers.

There was no need for the pharmaceutical companies to jump on the bandwagon and increase T3 many times over so that it was too expensive to be prescribed.. Only the wealthy can afford it now.

[SlowDragon Administrator in reply to shaws]

Some patients are still able to get T3 prescribed on NHS. Though many have had to fight hard to keep it and many CCG's have tried or succeeded in banning it

Approx £30million spent last year in UK on NHS Liothyronine (down from £33million in previous year)

The current price issue will get resolved and NHS England acknowledge approximately 10% of patients do need more than just Levothyroxine

british-thyroid-association...

[shaws Administrator in reply to SlowDragon]

Thanks for that information SlowDragon . I will have evidence to show GPs and they do know I am well established on T3 (even if sourcing it myself for a while) that should the need arise they should prescribe. The Practitioner did inform me when I saw him a few months ago that they would not prescribe T3 any more.

[SlowDragon Administrator in reply to shaws]

They are obligated to carry on prescribing, if you were originally diagnosed as having clinical need by an NHS endocrinologist.

even if this was not the case, if patient is well and stable on T3 the BTA say patients should remain on it.

You absolutely definitely can not have it withdrawn without consultation with NHS endocrinologist to discuss (virtually impossible to get appointment) so they must keep prescribing until the consultation

The alternative is private prescription for EU T3 via private consultation. Obviously vastly cheaper and many forced to do this

I was only finally given trial of T3 this time last year. (Only took 24 years!) Having, Hashimoto's, gluten intolerance and DIO2 gene variation helped in my keeping prescription after 3 month trial ended.

Does depend at moment (wrongly ) on post code lottery. Some CCG's are currently ignoring NHS England guidelines.

[shaws Administrator in reply to SlowDragon]

I am not at home at present so will have to wait a while and make an appointment to discuss it. I was prescribed T3/T4 by endo but that was about 4 years ago. I then dropped T4 and took T3 and GP did prescribe the full dose. I don't know if you remember that Mercury Pharma had some issue with T3 and there were quite a few complaints about it by some members. So I began to source my own.

[SlowDragon Administrator in reply to shaws]

I prefer Morningside.

[shaws Administrator in reply to SlowDragon]

I will keep it in mind.