I have just heard from my local Pharmacist that she is finding it very difficult to source my T3 as the National Institute for Clinical Excellence is shortly to implement a ban on the use of T3 as they state that.... "Levothyroxine is a safe and acceptable form of therapy for those requiring replacement thyroid medication and that the use of T3 is therefore not justified as the Thyroid converts Levo to T3"( which is wrong!)
This is an absolute disgrace, it is obvious that it is a cost cutting move, so what about people like me who have no thyroid (destroyed completely by radioactive iodine) and need T3 in addition to Levo, with T3 being prescribed by my very supportive NHS Endo. In addition N.I.C.E want to stop the use of Biologic drugs like Barcitinib which I am prescribed for severe Rheumatoid Athritis ,again , another cost cutting motive as these drugs are very expensive.
In my case , when I was prescibed T3 by my endo after 40+ years of misery on Levo alone (as my GP , like 99% of them didn't have a clue about Thyroid disease ) my Endo looked up from my notes and said "God Knows how you are still alive!"Those 40 years I was treated by my GP for depression, anxiety, metabolic sydrome, you name it and told to "lose weight", excercise more, and my bone weary fatigue was "all in your head!" It also caused my marraige to fail
Thank God I was after pushing and pushing for a request I was finally referred to Endocrinologist Dr Mailik who gave me my life (and eyebrows!)back in 6 months by adding T3 and lowering my Levo.
My Endo will put forward my case for my clinical need for being prescibed T3, but as he said N.I.C.E have the final say.So all you fellow sufferers on T3 make your voice heard as implement their move to stop T3 being prescibed . It is unacceptable discrimination towards us that need T3 in addition to Levo have a decent quality of life.
Written by
HilaryWB
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Patients who have already had a review by an NHS consultant endocrinologist should continue to be prescribed liothyronine under existing arrangements.
So if your pharmacist gives you any grief, I would show these prescribing guidelines, and as you are an existing patient and your NHS endocrinologist says the therapy is to continue, they have to source you the medicine and dispense it.
So unless NICE is issuing a new guideline (which I do not think is correct), this is the current one that is still valid at present and that needs to be followed.
My Endo will put forward my case for my clinical need for being prescibed T3, but as he said N.I.C.E have the final say.
I think the Endo's comments are nonsense. Two examples :
1) Doctors think that a ferritin level within range is absolutely fine. Ranges can vary enormously but the bottom of the range for ferritin is often anywhere from 10 - 30. NICE says that a ferritin level under 30 is proof of iron deficiency, but in reality doctors have the final say and won't treat if ferritin is in range.
2) In 2021 NICE produced new guidelines for the diagnosis and treatment of ME/CFS that explicitly said that patients should not be treated with CBT (of the directive kind where you are told your beliefs about your illness are all wrong) or GET (Graded Exercise Therapy) Doctors don't like the fact that they can't do what they've always done in the past so they circumvent the rules by reducing the number of diagnoses of ME they dish out and instead are diagnosing FND and/or Long Covid.
It can take years for NICE to issue new guidelines and if that was something that was being conducted we would have heard about it via all the necessary consultations that take place as part of the process.
This pharmacist is being lazy. Simply tell him there are no new guidelines and give him what’s been provided above. If he still continues to be difficult take your prescription elsewhere.
And most (possibly all) NICE guidelines are prefaced by this:
Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful
consideration of the evidence available. When exercising their judgement, professionals
and practitioners are expected to take this guideline fully into account, alongside the
individual needs, preferences and values of their patients or the people using their service.
It is not mandatory to apply the recommendations, and the guideline does not override the
responsibility to make decisions appropriate to the circumstances of the individual, in
consultation with them and their families and carers or guardian.
Therefore we are starting out with the view that liothyronine should not routinely be offered... But the KEY there is the word "routinely" and, whilst open to interpretation, it could mean anything from "try levothyroxine first" through to "only in exceptional circumstances can liothyronine be justified". But that is very much short of a ban.
Then NICE expressly states that the professionals/practitioners must take into account several factors. And expressly says the guideline is not mandatory.
I cannot see how NICE can ban liothyronine without a properly organised revision to NG145 and there appears no sign this is in process. If the guideline isn't mandatory, a guideline cannot make and enforce a ban.
This does not mean that someone, somewhere isn't angling for this.
jimh111 wrote I think this is a made up story. I would adk the pharmacist for specific details.
helvella adds I cannot see how NICE can ban liothyronine without a properly organised revision to NG145 and there appears no sign this is in process. If the guideline isn't mandatory, a guideline cannot make and enforce a ban.
This does not mean that someone, somewhere isn't angling for this.
humanbean adds Doctors don't like the fact that they can't do what they've always done in the past so they circumvent the rules by reducing the number of diagnoses of ME they dish out and instead are diagnosing FND and/or Long Covid.
These posters, with decades of experience of this nonsensical sh*t behind them, have in turn discounted, refuted and related how GPs (not even endos!) have skirted this issue.
Your pharmacist opines that she is finding it very difficult to source my T3
Do better. Try harder. Stop trotting out nonsense - your customer is well-informed and has a battery of egghead supporters behind her who will counter your claptrap.
Tell them you identify as T3, therfore you can only have T3.. 😊 I know it's no joking matter, my endo has just taken my T3 off me😡 she put me back on T4 teva which after 2 wks of sheer hell on it, I refused to take anymore (no thyroid medication since January 31st, and I've no thyroid) this to me is malpractice, and what there doing to us who do better on T3 is discrimination.
NICE... 😡 A bunch of idiots who have no concept of how we suffer daily from incompetent endocrinologist and gps, it's about time they were held to account.
I'm on a parathyroid site our lovely lady who set the site up as fought NICE over there ignorance in calcium levels, NICE having the calcium level of 2.85 before you can get treatment for primary hyperparathyroidism, ignoring normocalcemic hyperparathyroidism 😡😡.. Bet if we were flys on the wall in these meetings we'd see old men and maby women, lording over people's health without a by or leave.. Then a very nice lunch in some classy expensive restaurant 🍴 makes you wanta puke🤮
I am prescribed T3 here in France but only 30 per month. I wanted more per day and so recently purchased some online 200 tablets for £46. Easy and if you take a small amount reasonable cost to.
NICE has not said they're looking at T3 again, or thyroid conditions. Unless your pharmacist is on a new NICE committee with insider knowledge!! Anyway, they're sworn to secrecy.
S/he may mean the NHSE guidance from 2023? That's not good, as in one place it says 'deprescribe all patients currently prescribed this item'. But in their detailed document issued at the same time 'Liothyronine - guidance for prescribers' they say patients can have it. If you need to, give them this one
Have you tried asking for a paper prescription & either phoning around local pharmacies or using one of the online pharmacies? Hopefully you could find a better pharmacist who can be bothered to help you. They seem to tell tall tales all the time.
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