T3 refusal via GPS : Morning all Has anyone... - Thyroid UK

Thyroid UK

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T3 refusal via GPS

14 Replies

Morning all

Has anyone experienced Their GPs stopping T3 medication ?

Mine have rung me up this morning to tell me that my GP surgery can no longer prescribe Liothyronine because of the cost I’ve actually requested that I have Morningside brand because the others give me side-effects I don’t find them affective at all now this is raised a red flag medication the GP is no longer able to prescribe it and it’s been handed back to my endocrinologist to prescribe .

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14 Replies
SlowDragon profile image
SlowDragonAdministrator

Was T3 originally prescribed by NHS endocrinologist

If yes, GP MUST refer you back to endocrinologist and not change dose without endocrinologist guidance

GP should not alter T3 prescription - should refer to endocrinologist

pulsetoday.co.uk/news/clini...

Which CCG area are you in

Some are more difficult than others

You can search by CCG area too

openprescribing.net/analyse...

shaws profile image
shawsAdministrator

I think all GPs have been instructed to no longer prescribe T3 due to the exorbitant cost.

It is benefitical if you have an Endocrinologist but, again, few will now prescribe T3 and if someone has been well on T3 might persuade patients to to try levo again. Some may prescribe a T4/T3 combination. I am one person who cannot improve on levothyroxine at all.

I think this is an awful decision and I'd like to remove their thyroid glands and see how they get on.

I do know that millions of people find levothyroxine to be o.k. I am not one of them and many others on this forum don't find an improvement on levo alone.

Some improve on a T4/T3 combination. NDT (natural dessicated thyroid hormones) the very original made from animals' thyroid glands and they contain all of the hormones a human being needs prescribed. Unfortunately, this - too - was withdrawn (through mis-information) leaving many hypo patients shocked and searching for options.

in reply toshaws

I didn’t find out until this morning , then panic set in.

This really is a case to be investigated in the drug companies making these extortion pricing for essential medication

shaws profile image
shawsAdministrator in reply to

In other countries T3 can be sourced much more cheaply. I don't know why the suppliers to the NHS have raised the cost so high and due to the increase the BTA withdrew T3 from being prescribed, except if an Endocrinologist approved. Quite a number will not prescribe.

TUK and other groups met with the Lords about this - but nothing seem to have changed, as far as I know. regarding the 'professionals' attitudes.

If you wish you can become a member of Thyroiduk.org.uk who work in the background trying to change attitudes of the medical professionals who have now withdrawn T3 and NDT (natural dessicated thyroid hormones - safely used since 1892 well before blood tests were invented) through 'misinformation'.

EbonyEvans profile image
EbonyEvans in reply toshaws

There’s no competition as only one company sells to the nhs now.

helvella profile image
helvellaAdministrator in reply toEbonyEvans

Have there been changes? There were three recently:

Mercury Pharma

Morningside

Teva

Lotika profile image
Lotika

I started an NHS trial T4/T3 on 22nd Dec, so I assume this means local CCG will allow GP to prescribe if they’re satisfied that I’m sufficiently under medicated (TSH is the gold standard!)

Lotika profile image
Lotika

That accidentally worked previously (forgot to take T4 day before test, didn’t take it morning of test) and TSH went from 1.16 to 1.91 on the same range within two days! I’d done a private test two days before the NHS one. Generally people thought it wouldn’t have been the missed levo which moved the TSH like that over two days, but were all different and I guess the only way to know whether the slipped levo had anything to do with it would be to run the experiment a second time!

helvella profile image
helvellaAdministrator

I know - but I was replying to and asking EbonyEvans there had been a change I was not aware of!

Hashihouseman profile image
Hashihouseman

Invoke the disability discrimination/equalities legislation..... non function thyroid gland is a disability, consequential inadequacy of t3 is a disability replacing only t4 for people who don’t convert as efficiently as some others is discrimination, it’s like telling someone who is paraplegic they can have a wheelchair but not ramps to the door of their house. Forcing up someone’s t3 levels to normal /necessary levels by excessive t4 causes suppressed tsh and adverse health effects particularly risks of osteoporosis and low testosterone or other sex hormone imbalance, not to mention terrible headaches etc etc. Make a formal complaint via local PALS with clear intention of complaining to health services ombudsman within a year if not resolved, put the onus on them to prove you don’t need it, as an individual not by way of studies that look at people who are not you, mention patient centred care and keep a symptom diary to prove you are not successfully treated. And split your levothyroxine dose into 3 with a small increase to offset any reduction in absorption, too much levothyroxine in one go or cumulative will reduce rate of conversion to t3.

shaws profile image
shawsAdministrator

I cannot confirm this Scrumbler. It may be that if the endocrinologist is o.k. and will prescribe, the patient will have a trial. Although I believe that some Endos are not prescribing, which may be due to the Endo believing that T4 is sufficient.

shaws profile image
shawsAdministrator

Quite frankly I do not understand why the have withdrawn NDTs and also T3 - I know it was the exorbitant cost but, surely, cheaper NDTs can be sourced (the majority of GPs I believe haven't been given permission) and trying to make an appointment with an endocrinologist would probably be weeks ahead and even then you will not know if he/she describes or not.

shaws profile image
shawsAdministrator

Leave a message for your GP to tell him that you are making an appointment with your M.P. that your T3 will no longer be prescribed.

Unfortunately, T3 is rarely now being prescribed due to its cost. It's not the patients' fault if the suppliers have raised the price. If it was an Endocrinologist that prescribed T3, your GP cannot prevent you getting a prescription for T3.

TUK have also spoken to the 'Lords' about the withdrawal. Some people cannot recover their health on levothyroxine alone. Some can with T4/T3 combination and the fact that they've withdrawn the original replacement hormone (NDT through lies) gives the patients very few options.

ThyroidThora profile image
ThyroidThora

Hi,

This happened to me Jan 2020 and was removed from my repeat prescription on the day I was supposed to put it in for dispensing. I was told to go back to the hospital for them. It was an absolute farse!

TT x.

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