I'm struggling to deal with this so I'm happy to have found this forum.
Briefly - I've just moved to a different area in London so have changed gp practice. During my initial appt with the practice nurse I asked for a prescription for my T3 as was running out. She looked worried and said I needed to see GP. Gp said she wouldn't give it to me as the ccg had stopped prescribing it. When I asked what I was supposed to do when it ran out she just shrugged (implying lots of things - 'not my problem', 'I don't really care', etc)
Saw another gp in the practice, after me doing some research and finding that the guidelines seem to say that if patient has been prescribed it by endo and is doing well then they should be allowed to continue. Also that endo's are recommending that gp's shouldn't keep sending patients for unnecessary reviews in these very situations as they are inundated. She refused to give me a prescription. She refused to discuss the guidelines. The only motivation for this was cost - which she said quite openly and unashamedly. In the end, after me being very insistent that as she had admitted she didn't know much about hypothyroidism, (said T3 and T4 are the same thing) she wasn't in a position to stop my meds suddenly, she referred me to endo and said she would prescribe only until I was seen by them and after that they could prescribe themselves in they wanted.
Obviously the endo is an unknown and may also be working under the same interpretation of the guidelines.
GP, in same appointment, also refused to keep prescribing Hylo Tears for eye condition which is related to hypothyroidism.
I was prescribed T3/T4 combination - 100 T4, and 10 T4 for 5 days a week 16 years ago by Endocrinologist at Kings, because on T4 I still had symptoms of Hypothyroidism. I was reviewed yearly for a few years then referred back to my then primary care provider for follow up. They have been prescribing without question since then.
At a loss really. I know all the stuff about cost in EU and can't believe am so let down by NHS. Sorry - not so brief!
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gobsmacked66
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Hi,we had a similar problem with my husband's arthritis meds last year when we moved areas temporarily due to my work. The GP in the new area refused to prescribe the particular med he takes and it's the only one he can take that keeps him well. She tried to deny it was down to cost when he challenged her about it but we knew damn well that it was! What you need to do is put in a written request to your GP asking her to put in writing her ( honest) reasons for not prescribing your meds ,then submit a formal complaint about her to the CCG, once you have a response from them ,then complain to the Ombudsman dealing with NHS complaints in your area. My hubby had to pay privately through an internet GP for 17 months until we could move back to the area we came from. I am afraid this is the government trying to sneak in privatisation through the back door,practically forcing people to pay privately for meds they clearly need .Best of luck.
Thanks for replying SlowDragon. These particular eye drops are prescription only. I arrived at their use after trying many others and finding this was the only one that worked for me. The others merely exaggerated the painful symptoms. They were suggested by a chemist after being prescribed a similar product by Moorfields eye hospital, where I go every year for a checkup of my eye condition. I expect I'll be going back to the hospital and begging for them to prescribe that too. Great prospect...a life filled with trying to find ways to get meds I have had for ages, and need, in 21st century Britain, rather than doing useful and enjoyable things.
Sorry...I am absolutely gobsmacked by all this. 50 years of paying national insurance....I won't go on..
It's important to make formal complaints if your liothyronine is stopped. They are looking for easy options and find it easier to take on the patients rather than the drug companies. If taking on the patients turns out to be more hassle than sorting out the drug companies they will change strategy.
I would be forceful, and inform the doctor formally that she is flouting guidelines (quote them) and requirements that those already receiving T3 should continue to do so, UNLESS it is reversed by an enodcrinoloogist on further presentation. Accordingly, if she continues with that attitude you need to make a formal complaint about her to the GMC, regarding fitness to practice and giving full details of the situation and her responses. Lying down can never be an option.
That is awful, I really feel for you. I am due to get a total thyroidectomy and this worries me in case I might also need T3, I really hope you get sorted soon. Sorry, I can't offer any advice apart from that I would also be persistent until someone listens, how would that GP like it if this was happening to her
Prescribed 10mcg T3 in addition to 100/125 T4 alternate days since 2005.
Saw my endo last week.
She is being hassled by the pharmacist from my GP surgery every time I submit a repeat prescription to agree to take me off it.
I told her that my understanding was if the endo felt I had a clinical need and was benefiting from the T3 medication I should be allowed to continue.
Her response is that the GP can still refuse to fill the prescription and it is looking likely that they will.
She has asked the surgery to let me know if this happens.
The hospital can prescribe, but the endo has to put a special request in and this can also be refused on funding grounds.
It’s sounding like a postcode lottery.
She has had one patient who is now resident in UK after living abroad who was on the T3 for many years. The hospital have agreed to keep them on the T3.
There were 50 patients in my Health area who were on T3 two years ago and that has now reduced to 5.
I’ve got the BTA guidelines about continuing T3 but are there any NHS guidelines following the recent discussions in parliament?
My endo is overworked but very compassionate and empathetic and has said she will fight for me to continue my T4/T3 combination.
If I can send her the related guidelines she may be able to use them when my case comes up for review.
It’s also looking as if it’s increasingly difficult to obtain cheap and reliable supplies in Europe as I would be happy to purchase at a reasonable cost and save myself all this anxiety.
gobsmacked66 I'll private message you, as I wonder if you'd be willing to send a summary of your situation/ conversation to help the T3 campaign? I'll do it now.
Hi and thank you for all the responses. I'm digesting them and would like to respond to each. Meanwhile on Tuesday I sent an online consultation to the gp surgery (I can't get an appointment until next Monday) requesting that I am referred to a specific endo rather than the one they chose without asking me where I wanted to go. It's now Thursday evening and they haven't responded at all and I had automatic email back saying response by Thursday close of surgery.
TaraJR I wanted to wait for the answer before I did a summary, which, yes, I'm very keen to do. I guess I'll wait to see the response of the gp I'm seeing on Monday and then I'll write it up.
Still gobsmacked and feel afloat without a paddle now, having got used to a the caring and humane NHS I've previously experienced.
So sad to hear everyone else's stories... Although comforting to share it's not comforting to hear how widespread the problems are.
All of this time and effort going into convincing themselves that T3 doesn't make any difference rather than just confronting drug company...doh.. (smell a money rat)
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Telling GP that you are taking T3
CCG refuse to prescribe T3
I wonder: new guidelines for endos to take away levo totally, after already refuse the t3?
What to tell GP about taking T3? 
