hello lovely people, been a while since I’ve posted on here but need some help (and to rant a bit). I recently requested my repeat prescription which I have done umpteen times. But unfortunately for some reason this has led to the gp deciding I shouldn’t have been prescribed lio for the last three years and to stop it with immediate effect.
I know and appreciate that I am extremely lucky they’ve been prescribing it at all but I am absolutely raging that they’ve done this in this way leaving me high and dry.
To make matters worse I’m currently doing ivf so this is literally the worst timing and is so so stressful as messed up levels increase the chance of miscarriage. I have contacted my private endo and he will sort a private prescription and have managed get the gp to prescribe for 7 more days but that will actually only last three days as I’d just passed on my clinic letter which confirmed my dose had doubled. They have told me they’ve been very kind doing this despite leaving me in a very difficult situation. Just wondering if there’s anything I can do and at the very least anyone have advice on the most effective way to complain?
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Arlie123
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No it’s a private endo. He just sent my clinic letters to the GP and they just started prescribing the t3 without me even asking! Which I know is lucky. I sort of get them stopping it just cannot fathom the manner in which they’ve done it. Seems negligent to just stop someone’s medication like that.
Arlie123, shocking way to treat you. I hope someone else will come along with suggestions but seem to recall that if you have already had scrips for lio, then Roseway labs can help you. Hope I have got that right.
Is it your usual GP (do you even have one anymore? I know I don’t; it’s totally pot luck who I get to see if I’m desperate enough to make an appointment and I’m not even sure that I’ve always seen a qualified GP…)
I’m just wondering whether it’s someone without any qualifications in the surgery who’s taken this decision. Have you been able to speak to your GP one on one? If not, that would be my next move. My move after that might be to involve my MP. Might not help at all but it feels like anything is worth a shot.
Like you say, the timing is just awful. So much for working with patients in partnership.
I’m not sure, it was one of the GPs but it was the pharmacist that rang me to tell me who was also awful to be honest. I do have the same GP but i don’t see her often - she was the one that told me I was fine when I was clearly hypothyroid!
Hi the NHSE guidance is a GP cannot accept a private endocrinologists recommendation and you must see a NHSE endo. BUT the BTA and NHSE are very clear it is risky to stop T3. I will dig out the guidance. TUK and ITT have information on the guidance. My suggestion is get armed with that and go back to the GP and ask for a referral and ongoing prescribing until you have been seen. On the referral investigate the endos in your area who are T3 favourable. There are plenty who are not thyroid specialists and you do not want to see one of them. I would also carefully follow the great guidance on ensuring vitamins are in the right range before you get to that appointment.
Oh my god thank you so much, this is exactly what I need! Thank you! I was wondering about the endocrinologist referral and whether that was an option. Massively appreciate this, thank you!
And yes I’ve followed the amazing advice here and vitamins are all optimal and I test them every few months - would be in a different place without this forum!. ❤️
Possibly, have you searched your ICB formulary. Google or ITT have recently posted a file with the links. If you let me know I also know how to check. Not all ICBs allow T3.
Can your endo write the prescription on NHS paper? I’m assuming he works for the NHS in a hospital because so many private doctors work part time in the private sector and the NHS. Or, ask your GP for a referral to him via NHS route.
Arlie123 - I am so sorry to hear about this. I am afraid I had this done to me in 2023. . They just suddenly denied the T3. I had had combo for 3 years until shortly before and then mono therapy T3. A doctor at the surgery had sent me a letter to say that T3 was dangerous. They said I should go to the NHS endo but Oxford Endo department had already confirmed that they would not prescribe it. At the time I was under a private Thyroid clinic who were arguing that I needed T3. They gave me a private script to Smartway Pharmacies who still send me T3. I didn’t fight it as I went to see the nice GP who confirmed that when I want to be treated with T4 only that I should come back to them. (Very nicely said)! As it is I now have been referred to the NHS endo re adrenal issues in February! I will see what they say but it is only to do a ACTH stimulation test to confirm it’s not Addisons. They do not acknowledge low cortisol from saliva tests. This can of course mess up my thyroid treatment.
Sorry about this long reply but I feel we are in the same boat but for you it is much worse having IVF. I am an old buddy of nearly 77.
A doctor should not simply stop a treatment with out at least discussing this with you. he should give his reasons to you and you and the doctor have to agree the course of your treatment.
T3 is in the list of items that should not be routinely prescribed. But the document DOES say:
liothyronine:
follow NHS England prescribing advice on liothyronine when initiating or reviewing the prescribing of liothyronine
the recommendations do not apply to patients who have already been reviewed by an NHS consultant endocrinologist
all other patients currently taking liothyronine should be reviewed by an NHS consultant endocrinologist to determine future treatment plans
new patients with overt hypothyroidism whose symptoms persist on levothyroxine may be prescribed liothyronine after a 3-month or longer review by an NHS consultant endocrinologist
Liothyronine should only be initiated by an NHS consultant endocrinologist when being prescribed for the treatment of hypothyroidism.
Liothyronine should be prescribed only if no alternative intervention or medicine is clinically appropriate or available for the patient.
Patients taking liothyronine for the treatment of hypothyroidism who have not already been reviewed, should be reviewed by an NHS consultant endocrinologist.
it also says:
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.
it also says:
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.
I think the first thing you should do is speak to the doctor to find out why they are taking this unilateral action.
It is not good medical practice to say you should not have been taking it for the last 3 years. Demand, in a nice way, a more detailed explanation. Demand, in a nice way, to have the shared decision making approach referred to in the document NHS England prescribing advice on liothyronine
In that consultation, list the symptoms that have been alleviated by T3. Tell the doctor that removing T3 is not clinically appropriate because it resolves or reduces those symptoms.
tell the doctor that this confirmed in the guidance Liothyronine – advice for prescribers which says:
...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). T4 does not resolve these symptoms, only T 3 does.
for these reasons your T3 should be maintained.
if they do not maintain your T3 threaten to make formal complaints to NHS England, the ICB and the GMC. the reason is that they are not following NHS guidance and consequently they are harming your health.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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