I've been on T3 since 2017 ( 40mg ) combined with levo of 150mg after visiting a private endo. At the time before 2017 I had been terribly unwell for many years - since 2006. I won't bore you but my GP really made a mess of my treatment. I was under range on T4 for 6 years but because my TSH was in range she didn't think I could be hypo.
My GP refused to refer me to an NHS endo - so I asked for a private referral out of desperation.
He immediately diagnosed secondary hypo & spent 6 months getting my meds up to the level above and got me feeling well.
Suddenly a few months back the perscription team at my surgery rang to say that I could no longer have the private script for T3 ( which I pay for) because the original request came form a private endo - this decision was made by the Meds management team. Oddly a few months back they wrote to my endo to complete a Shared Care Agreement - which he did but he was surprised as I hadn't seen him for 6 years. They literally just stopped my T3 script overnight.
I have had no call from the GP to discuss at any point- I seriously cannot believe they can just stop a key medication with no clinical discussion or even to offer to replace it with T4.
I wrote a detailed complaint letter 3 months ago and have just been informed that I have an extended meeting tomorrow to discuss.
Has anyone come across this type of policy change recently - basically penalised cause I saw a private endo back in 2017 ? And can I fight this under any patient care guidelines ?
Also - can you please confirm what the equivalent levo dose is for 40mg of T3.
Thanks in advance for any help
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cazza1001
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I have a blog about the relative potency of T4 and T3 - but I do not think it is possible to just multiply 40 by a number. It is always more complicated than that.
Have a read and see if it makes sense - and whether you can use any of it to your advantage.
helvella - How much more potent is T3?
A discussion about the relative potency of T4 and T3.
I wouldn’t dare to offer any advice such as the experts on here can - but I would like to ask - Aren’t we supposed to be a partnership? Us and our medical practitioners? Your views and experiences are meant to be taken into account. There is NHS Guidance on this somewhere.
Have you been tested recently, to lead to this sudden one-sided decision? Or is it something else - not patient centred!
What a terrible thing to do. They're obviously not adhering to their "do no harm" principle.I didn't think they could unilaterally decide what is best for you with no consideration of your health and wellbeing.
if it was an NHS prescription ( i realise it isn't )... the guidance below is what they should be following . but since it's a private prescription ( ?written by one of their GP's ? )...technically this doesn't apply , but as this is NHS advice , it does carry some weight , and it clearly says that it's not advisable to suddenly stop access to T3 for people who they are providing it to , so perhaps you can use that part of it to lean on them to at least continue to provide private prescriptions until you can sort out another source privately... or until they refer you to an NHS endo to review.
"......This prescribing advice sets out how liothyronine may be reviewed and then withdrawn or continued, or initiated.
In all cases, the patient and the prescriber should take a shared decision-making approach to reach a decision about the most appropriate treatment for the patient, taking into account the patient’s values and preferences.
Patients currently prescribed liothyronine
Patients who have already had a review by an NHS consultant endocrinologist should continue to be prescribed liothyronine under existing arrangements.
Reviewing liothyronine
Patients who have not had a review and are already established on liothyronine as monotherapy or in combination with levothyroxine should have a review by an NHS consultant endocrinologist.
The NHS consultant endocrinologist should:
review the patient and consider switching to levothyroxine monotherapy where clinically appropriate
not routinely withdraw liothyronine for patients who feel well on liothyronine with a serum thyroid stimulating hormone (TSH) within the reference range (see BTA and SoC joint consensus statement)
consider, for people stable on combination therapy, trialling levothyroxine monotherapy to see whether the liothyronine is still benefiting them
advise primary care prescribers on reviewing or adjusting a patient’s treatment where this is the responsibility of the primary care prescriber.
Liothyronine prescriptions should continue until the NHS consultant endocrinologist review has taken place.
Withdrawing and stopping liothyronine (including switching from liothyronine to levothyroxine)
After a review, if the decision is to withdraw liothyronine prescribed as monotherapy or in combination with levothyroxine, withdrawal should be gradual in line with NHS consultant endocrinologist recommendations and may take many months to complete.
Please note:
Liothyronine should not be stopped abruptly.
Dose conversion advice can be found in the BTA and SoC joint consensus statement.
Continuing liothyronine
If the decision after a 3-month or longer review by an NHS consultant endocrinologist is to continue liothyronine as monotherapy or in combination with levothyroxine, primary care repeat prescribing would be reasonable in line with any local shared care arrangements...... "
Ohhh my that really is very very helpful - it’s very clear they shouldn’t have stopped it without referring me to an nhs endo at least . Thank you for taking the time to do that
It's beggers belief! Honestly do they have a single brain cell in their heads. To just stop someone medication, whether private or nhs with no thought to how ill you could become. Why would someone be prescribed a potentially life changing medication and think it's OK to just stop it.. idiots!
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Just been prescribed t3 and have a few questions…
Why has Levo stopped working?
Good new from gp
Private Endo and T3
Can the formation of a goitre after a year on T4 help with the argument that monotherapy is not working?
