Hello GP receptionist stopped Liothyronine when I queried it was endocrinology consultant that initiated it so therefore could only stop it they refused to show me proof email of this?Now I am seeing GP in 4 days time because she is going to explain to me why she will not accept the shared care agreement.
Any help on what to do next as it's caused a lot pain and agony to get on T3 now after a year seeking to remove it.
I’m so sorry. Two of my kids have shared care agreements and I’d go mad if this happened! Hope someone experienced can help. So stressful.
Are you UK, how did you get the shared care agreement?
I dont know what the problem is with doctors and T3. I found it helpful to write a letter, gave me time to think and put stuff down carefully and unemotionally. I have found trying to discuss things with doctors in person impossible, they leave me flabbergasted.
Did the letter achieve anything?
Yes they were going to reduce my dose of levo and decided not to after I wrote the letter. I explained that T3 suppresses TSH at even very low doses and that my endo supported my dose.
Slightly different problem but I wrote a letter to a GP who lowered my Levo dose by text, I offered to try splitting the dose and she offered me an appointment with another doctor who reinstated my dose.
Can you write to your endo for advice?
They put you on T3 for a reason. I doubt that reason has gone away. Remind them of that. They are not supposed to change your drugs without your agreement, so tell them you do not agree in the strongest terms (politely!). Ask why they want to make you ill.
There does seem to be a drive to get everyone off T3 at the moment. As T3 has come down in price, it just seems cruel.
If T3 has come down in price why would that make them want to get people off? Has the NICE guidelines changed? Or prescribing guidelines somewhere?
My horrible endocrinologist as just taken my T3 off me, it was her who put me on it because after 2 years on T4 it never moved My T3 above 3 malabsorbtion /conversion from T4 to T3😡 so she took me of levo and put me on lio but I'm having real gut issue on both of them, I tried to convey this to her on Dec 27th but she just told me to find another endocrinologist 😡.Yes I will, and I'm making dam sure I never get her again 😡
But now the fight starts all over again ,1 ,trying to get a gp appointment
2, trying to get the endocrinologist appointment, because I'm not going back on T4, I've now no T3 so what the hell do I do? 😡😡.
My GP surgery done the same to me when you ring up what is the reason then soon as you say thyroid they say no appointments, or they let you wait 44minuites on hold then hang up on you, going through complaints process which I left as started T3 thinking I need to progress with it again
It's a nightmare, I complained and we're firmly told "we have 14 people manning the phone lines and you just have to be patient, we are sorry you are finding it difficult to obtain an appointment at the surgery but you must go through the process" .. Call between 8am and 9am... "Yeah I do" "you either hang up or say no appointments available"And this happens quite frequently not just maby one day!
My surgery have the worst ratings to appointment availability.
But the other surgerys are really no better, so moving would be outa the fat into the fire🤦♀️.
It's sole destroying when you really need to see that gp and you have to fight everyday, ringing the surgery up and 🙏they answer 😢
Have you gone through the complaints NHS process
She just stopped it on Dec 27th,so I've not had a chance to even speak to a gp yet.I've got one strip of T3 left now 😕 the gp also stopped it before I saw the endo, I told her I had around 8 days T3 left, do you think I'll see the endo in 8 days? 😂... No! got the appointment for 3 weeks away (urgent referral as my bloods were TSH (11.59) they've been erratic due to malabsorbtion, due to constant diarrhea.
So she re introduced the T3 prescription one months supply 😡
But as I said endo as stopped it😡 and I'm NOT going back on T4.
It means ringing the surgery up tomorrow in the hope I can speak to someone, or write a letter to the gp who referred me to endo, although over the years I've written to the practice manager and never received a response 😡
I'm not sure I will get anywhere with the NHS complaints and I've heard powher the advocacy service are also awful
They cover there own backs and keep you busy with endless paperwork, writing to different departments to try to get some answers 🤦♀️I recently had an appointment with a parathyroid surgeon who found a mass in my neck thyroid tissue (full Thyroidectomy in 2019) said she would chase up the report on my thyroidectomy as this mass was not there in 2022 after my US scan.
I informed her of the hospital, and surgeon, they sent her a reply saying... "We do not have a patient with that name and DOB as having a full thyroidectomy in this hospital" 😂😂😂 fgs I was taking the details off the hospital discharge form for the parathyroid surgeon 😂😂.
She's now asked ME to enquire at the hospital to obtain the report 😂😂😂😂 gotta laugh.... or I'd 😢😢😢
They are also a bunch of idiots at my GP practice , receptionist lying and deceiving constantly. They misdiagnosed me with health anxiety as its easier then telling the truth.
Yep... I'm constantly gaslit by gp receptionists,The only time one was sympathetic to me was when I actually got my diagnosis of hyperthyroidism.
I came to the surgery to talk about the anti thyroid medication not working and collapsed on the chair, she came over to see if I was OK.
I just said "well no not really" she then said "I knew you were not well all those times you came in, but there was nothing we could do as we're told to keep the appointment list down" 😡
I was told there was no proof that combined (T3 +T4) works. There is - there are research papers that show patients are better with the combined treatment. I have just sent a wodge of them to WLAMs (Welsh lot who think they know better) and also pointing out that no one has ever asked me how I feel, and that Quality of Life is the main rationale.
If you felt better taking combined therapy, its all in your pretty little head...
I asked 3 times for quality of life questionnaire they refused to send it out
Sorry I'm not on combination therapy, I started on T4 after TT in 2019, struggled on with awful gut issues found out the T4 I was on contained lactose, I'm lactose intolorent and have colitis, hence the trouble with the thyroid medication.The endo change me to T4 lactose free Teva, but I still struggled the T4 never moved my T3 up, so after 14 months she put me on T3 only again gut issues.. Found out it contained lactose 🤦♀️changed to lactose free teva with same result, gut issues bad diarrhoea, cramps, inflammation of colitis.
Again I saw gp about it and she recommended I come off T3... But T4 does the same so you're putting me on a medication that's no different it's not going to help my gut issues 😡
Because I felt forced I went back on T4... Wham... Same effect only now my T3 as hit the bottom again, so I'm put back on T3 Roma.. Over a year now and still I have the gut issue and malabsorbtion noted BY the endocrinologist I've just seen🤦♀️
unless your endocrinologist has stated to your GP that you no longer need T3, surely the GP can’t make that decision alone? There must have been a reason it was prescribed in the first place. Can you contact the Endo via his/her secretary and find out if they can do anything ? Hope you get the help you need
The endocrinologist said I could continue the trial because of symptomatic relief
So, it seems to me that the GP should abide by the recommendation of the endocrinologist , and maybe he/she could be persuaded to write to the GP to reinforce this? worth a try?
I have written to the endocrinology receptionist to ask why it has been stopped, not sure if this will be enough
Ask the consultant to write to the GP to state the medication is to continue. And ask for it to continue under shared care agreement so the consultant stays involved. Good luck
The shared care agreement was sent to the GP but she keeps writing back to the endocrinologist saying can you state what the clinical need is, even though the consultant wrote in last letter 'in view of symptomatic relief she can continue combination treatment T4 and T3'.
I would think the GP is trying to save a little on their budget but don’t give up, it’s too important.
Be direct with the GP, the consultant has stated the clinical need, what is the problem?
Ask the consultant to give a clear instruction to the GP to continue prescribing (with please and thank yous). Because it’s a bit vague to say ‘can continue’. It’s not helping.
The whole letter is vague, but the GP picking up on any old crap to make it difficult. Originally receptionist said they been told by email that consultant had said to stop it. When I said can I see that email "no you cannot". They will continue making my life difficult.
Endocrine letter
“Strong feeling” ffs! 🤦♀️
It does not say about stopping, the decision is about dose. It does say consultant will consider blood results and whether to discharge. There’s your opportunity - Contact the consultant, ask them to continue the shared card agreement and state dose because without it the GP will withdraw the T3 treatment and your health with decline.
Good luck!
The consultant already sent the shared care agreement to the GP. The GP wrote back and said can you tell me the clinical need for the T3 as it is a lifelong drug and its damaging to the heart. So GP already trying get out of it. Its only damaging in high doses- hence no fear of that!
Keeping my fingers crossed for you!
Thank you. Though beginning to think there has been some recent guidance for GP to follow.
I’m not the expert and there will be those on the forum who know a lot more, but as I understand it, recent NICE guidelines said there was insufficient evidence to support the prescribing of T3. Total nonsense of course! And also local clinical commissioning groups are looking for ways of saving money, so will happily use the guidelines as an excuse to stop. However, patients’ needs and experiences should be taken into consideration in my opinion.
The NICE guidelines are here:
Thyroid disease: assessment and management
NICE guideline [NG145] Published: 20 November 2019 Last updated: 12 October 2023
I saw my endocrinologist recently, didn't go well.. I'm on T3 only but are having gut issues with both T4, T3 (not combo) But I had to roll my eyes when she told me... "we as specialists don't think there is a need to prescribed T3 or NDT!
T4 is the go to medication for hypothyroidism (I like the fact these specialists don't understand I don't actually have a thyroid so my loop is actually broken😡).
I then informed her, She herself prescribed the T3 because I had malabsorbtion and a conversation issue on T4 .
But you want to put me back on T4 and take me off T3.. Not tackling the gut issues.. You just keep me going on the thyroid medication merry-go-round 😡
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