Have had T3 removed…no discussion. Have been on 10mcg for almost 20 yrs (+ 125 T4). What do I do now?
Liothyronine removed by GP: Have had T3 removed... - Thyroid UK
Liothyronine removed by GP
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RichardEva
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Someone else here...healthunlocked.com/thyroidu...
SeasideSusieRemembering
RichardEva
GP can't, as far as I know, remove prescription for T3. He needs to refer you back to endo for endo to make decision.
SlowDragon knows more about this than me.
shawsAdministrator
Complain and it is so annoying and the fact that GPs know little about how best to lead a hypo patient to good health and no longer have clinical symptoms.
The fact that mine phoned to tell me that my:-
"TSH is too low T3 too high and T4 too low.
I responded "my TSH is low because I take T3 alone.
My T4 is low because I don't take take levothyroxine which is also called T4.
GP: but T3 converts to T4 - no Doctor it is the other way around, T4 should convert to T3..
Dear me, not if you dont have a thyroid it doesnt?!! Cant even get his info the right way round?
JaneCxxx😣😎❤
I am having similar problem with endo who is "very worried" about my very supressed TSH. I keep trying to tell her that the TSH is supressed because I am on T3 (which she isn't happy about - osteoporosis and cardiac arrhythmia risks).
Endo wants me off all thyroid hormones.
And back to being a non-functioning version of a human being.
Her final salvo was that I could "go private" or "self-treat".
Her 'statement' to you shows that she may be afraid that 'she' will be reprimanded if something happens to you.
A low TSH wont harm us but a very low FT3 might cause unpleasant symptoms. They rarely test Free T4 or Free T3 and probably the results of these two will be more informative.
The following is from a scientist/doctor/expert on T3 and who was an Adviser to TUK but Dr Lowe died due to an accident.
This link might be helpful.
RichardEva,
20 years !!! .... Have you challenged your GP? Asked why? 10mcg a day isn't a lot and can make 'the' difference.
SlowDragon will hopefully give you details of the correct protocol and what to expect, not that the medical establishment always follow it ☹️.
When my T3 was stopped years ago I moved to a different health authority but after they stopped it too I lost all my fight and couldn’t trust anymore. I can't live in fear of them suddenly withdrawing meds that have brought me well being so I buy my own.
So this is where many of us just start self medicating from meds sourced from abroad. A sad and desperate situation. Sorry this is happening to you after so long.
Hi
Everytime I read about members having to buy their own T3, NDT or on the PA forum members having to buy B12 jabs it just makes me so angry. What next, diabetics having to source insulin or asthmatics having to buy their own inhalers.
The amount of money the NHS wastes each year is criminal. It does make you question why we are paying so much in tax, supposedly to support the NHS, when the NHS is failing so many people. And if you can't afford to buy your meds, that the NHS refuses to prescribe, are you then supposed to be resigned to spending the rest of your life in poor health?
I know they can't afford to give every patient everything they need but more and more people are having to source their own drugs, pay for their own surgeries and procedures, pay for tests and investigations. its creating a 2 tier health system. Those who can afford to pay or who are desperate enough to find the money somehow, and those who can't.
So true, well stated!
Did you ask from where the decision originated? If it was from your CCG. I believe they need to have you seen by an endocrinologist, who will assess your need for it. My GP phoned me two years ago with a request for me to make an appointment with an endocrinologist at our local hospital with a view to discussing my own need for T3. We were just in the first lockdown, so I very sensibly suggested I should wait a while. Eventually I made my appointment and took a typed account of my thyroid history, with descriptions of my awful health before I started T3 and the improvements since being on it. The endocrinologist read it all, asked a few questions and then said she was annoyed with the CCG for making me see her, as it was clear that I needed T3 to remain well. She wrote to my GP accordingly and copied me. It was the most welcome letter I think I have ever received and the CCG are still paying for T3. Worth fighting it, I think.
That's good you've found T3 helpful and it is prescribed too.
Hennerton,
That's really good to hear 😊.
Do you still see an endo annually as part of the shared care agreement?
Do you get other GP's at your surgery questioning a low TSH?
Are surgery/labs willing to test your FT3 levels?
No, there has been no suggestion of seeing an endo again, fortunately and yes, I regularly get other doctors querying my low TSH but I stand my ground and so far they have backed off.
The labs are hopeless about T3 and so are the doctors but I always get bloods done by a brilliant nurse and she just adds on T3 to the blood form and so far this trick has worked. I am having my annual blood test next week and warned them that my TSH would be suppressed. The person querying it obviously knows nothing about it, because this is a new scheme, whereby the pharmacy at the practice does the annual review, instead of a GP. We shall see…
Hennerton,
Well, good luck, and well done for standing your ground. It takes a lot of inner strength to continuously be at the forefront of yet another battle. 😊
Hi. I am from the United States and I don’t have a thyroid anymore due to thyroid cancer. It’s an up-and-down battle trying to get the numbers right. But I can’t help to comment about GPs and internists who want to play endocrinologist and that’s why a lot of endocrinologist went to research and aren’t in medical practice any longer. But these GPs and internists do not know what the F they are doing when it comes to thyroid. They’re all about the tsh and maybe T4 and they leave the rest out. . . I would continue to search for an endocrinologist who believes in more than numbers… believes also in symptoms!! . At least you have some what of a platform to advocate for yourself and where and what you feel good on!
All the best!
I am not having problems at the moment, as I saw an NHS endocrinologist last year, as requested by my GP and she confirmed my need for T3. I expect that is not what my GP was expecting but the practice continues to give me T3. My only concern is when my GP moves on one day. She accepts that I need it. The next one might not. We never know what is in store in relation to being without a thyroid. It is all a lottery.
Its on your record....now twice by two endos....so if they ever do refer then back to the letters. Outrageous the way we have to fight & are forced into being more knowledgeable than GPs because its the only way we can ensure we get effective treatment....lol
The other issue that always worries me is being in hospital and unable to tell the staff what I need and at what times etc. They only work on a “one size fits all” schedule. Oh the perils of being dependent on the little white pills!
They do indeed! Though last time I was in I managed all my own meds but had to sign a waiver. Some years back I had a big big op & for a few days wasnt well enough to manage my meds. They mis managed them....& even in my barely conscious state I noticed, felt awful & took the doctor to task.....he'd given a third of the dose of a critical med.....couldve killed me & I told him so. Its all a bit of a haze....but I remember managing to talk to the nurse who checked, was on the ball & spotted the error.....went & got the doc. So yes you're right to worry about it. I think if am ever in that position again I'd have to ask one of my adult sons to check for me & give my sons the daily regime. As for timing of doses....forget it....am more concerned about actually getting all the correct doses of the meds!! Lol....Truly scary.Disgusting we have to think about such things.
waveylines,
That's great they allowed you to sign a waiver & organise your own meds. I never knew we could do that.
I was in hospital a couple of days last year and husband has to sneak my NDT into me as they said only thyroxine was available and they didn't give out 'supplements'! 🙄
Yeah - I usually have to take two lots - one for them to lock up! But this time they offered me a waiver....less work for poor hard pressed staff! I take my own supplements & actually my son gave me a bag of gluten free food just incase. To be fair they weren't too bad on that....bit hit & miss & no choice. The bag was handy for top up! 🤣
SlowDragonAdministrator
A GP does NOT have authority to stop your liothyronine
Print out these guidelines
Highlight all relevant paragraphs
Do cover letter and send copy to your GP and separate copy to the practice manager
sps.nhs.uk/wp-content/uploa...
● Advise CCGs that individuals currently prescribed liothyronine should be reviewed by a consultant NHS endocrinologist with consideration given to switching to levothyroxine where clinically appropriate.
● Advise CCGs that a local decision, involving the Area Prescribing Committee (or equivalent) informed by National guidance (e.g. from NICE or the Regional Medicines Optimisation Committee), should be made regarding arrangements for on-going prescribing of liothyronine. This should be for individuals who, in exceptional circumstances, have an on-going need for liothyronine as confirmed by a consultant NHS endocrinologist.
● Individuals currently prescribed liothyronine for hypothyroidism are to be referred to a consultant NHS endocrinologist to consider transition to levothyroxine through a trial titration where clinically appropriate (see guideline 3.1.2 and 3.1.3 below).
● The consultant NHS endocrinologist should identify when and why liothyronine was initiated, and must specifically define the reason if any patient currently taking liothyronine should not undergo a trial titration to levothyroxine; this is to be communicated to the GP.
● If a previous trial titration has proved unsuccessful, the consultant endocrinologist should decide whether there is any good reason to consider a further review, and inform the GP accordingly.
● The review of NHS patients presently receiving liothyronine is to be managed locally and scheduled according to service capacity. Local commissioners should consider providing advice to GPs to support the gradual conversion of current patients to levothyroxine, where clinically appropriate, with NHS endocrinologist support, and with appropriate arrangements for endocrinologist review.
● The abrupt withdrawal of liothyronine therapy from patients who have been stabilised on treatment for hypothyroidism is inappropriate.
● Treatment changes are to be under consultant NHS endocrinologist review or in circumstances where a GP is fully supported by a consultant NHS endocrinologist.
● Where liothyronine is prescribed, GP repeat prescribing would be reasonable after completion of a 3 month or longer review by an NHS consultant endocrinologist.
● Where liothyronine is so prescribed, prescribers and commissioners should consider the most appropriate means of meeting the patients’ needs, and any arrangements for shared care are to be agreed within the local health economy.
● All shared care arrangements are to be authorised by the local commissioner.
I am just wondering on reading this again just how one can get the commissioner to authorise a shared care arrangement? I have just received a copy of the letter from my private endo to my GP as he becomes my NHS endo in April. He relates my current meds and the fact that I have been improving since the introduction of T3. But then he writes 'She has an appointment to see me on the NHS on 11th April.....therefore I have given her a prescription for just one month. She understands that I will not be able to prescribe Natural Thyroid or T3 via the NHS'. I am about to write to him to say this is not what I understand as last time we had a consultation and discussed this i pointed out that Devon is known to only allow prescriptions for up to 10 mcg T3 . I thought I would have to source my NDT myself but was hopeful i might be able to get the T3. He works in a Somerset hospital and I live in Devon so I am unsure quite how I stand.
When you see endocrinologist as NHS patient ask him to prescribe your T3 on NHS for 3 months, then he can write to GP to take over ongoing care and prescription going forward
Thank you. I will try that.
Yes I did what slowdrahon said. The endo in a different county wasn't allowed to.provide it from his hospital but he could recommend that the GP prescribed it. That worked & it has remained ongoing mow for 7yrs.
SlowDragonAdministrator
Roughly where in U.K. are you
Over 57,000 prescriptions for T3 in England in last year
Typically 6 prescriptions per person per year
Searchable by CCG area
openprescribing.net/analyse...
How much T3 do you have left
Which brand of T3 do you normally take
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
tukadmin@thyroiduk.org
You may need to go down private route while you fight your case
Private prescription enables access to Thybon Henning 20mcg tablets via specialist U.K. pharmacies. Cost is 50-60pence per tablet
Many people find Thybon Henning superior to U.K. T3
NHS currently paying £72 per 28 tablets 20mcg T3
So the NHS STILL haven't sorted their procurement out then. I thought they were fining companies who over charged them? I despair of the NHS - they waste soooo much of our precious money!! Then do incredibly harm to patients by refusing treatment until the patient is extremely ill & then only give minimal support - insufficient to restore full health. And train their GPs to act without any ability to make basic diagnosis as theyre trained like in call centres to follow computer pathways only & not to think or analyse. Talk about dumbing down! I guess they think they're saving money that way but in the long term though they're not!
SlowDragonAdministrator
Also might be worth involving your MP, especially if one of the (mainly Labour) Mp’s who have been helping other patients in their fight for correct treatment
I would contact health watch UK and explain what has happened and how it has affected you, they helped me with issues regarding my medication.
Like others have said it’s probably being pushed by the practice pharmacist, seeing the endocrinologist may put a stop to their interference.I’ve read a paper recently that points to lower levels of testosterone that may cause the breakdown of t4 to T3 conversion . I’m pushing my Gp to investigate.
Do you have a copy of this paper about the relationship between testosterone and T4 conversion that you could share? Thanks.
Oh I’m interested in this, please do share this paper.
I can’t find the paper I originally read ,must be on my pc. But on the paulrobinson.com site it refers to low testosterone and growth hormone supplementation increasing t4/T3 conversion
Thankyou for the link I’ll take a look and see if I can see it.
Good look with this investigation 😊
I abandoned seeing doctors and endos many years ago, started buying NDT from overseas and recently started also buying and adding in a little T3 too...shouldn't have to but the stress and time and effort wasted in doing the medic rounds made me feel quite ill. It does annoy me that I am forced to spend money I can ill afford on sourcing my own meds because the NHS doesn't give a **** about thyroid patients, but is on the other hand sort of freeing and makes one address other areas of life that need attention.
Could you please pm me about how you obtain your NDT and T3? I am about to fight to get my T3 on NHS but may fail and know I will not get my NDT prescribed. I would be most grateful.
Mine was stopped 2017 75mcg daily. I had to apply for individual funding from local CCG. They refused twice despite strong letter from my Endo. 3rd time they accepted it but it took 10 months, my Endo gave me private prescription during that time. My GP still refused to continue prescription on the grounds of cost, so I saw my Endo every 3 months at hospital for prescription for years, a complete waste of his professional time. The hospital were at the time doing split doses dissolved in water so they gave me 60mcg extra each day! So I could split off 5mcg 3x a day and throw the rest away, I was perfectly capable of cutting tablets but it was handy as I built up a huge stash. They complain about the cost but if CCG picking up the bill they have money to burn.
Your gp needs to put his refusal in writing so you can apply for funding, it's shocking nothing has changed in all these years.
Hi Richard I’m not sure if it’s different in Northern Ireland to the rest of the UK but GP’s can remove medications here. In fact they can refuse to issue prescriptions that hospitals or private consultants recommend. I have experienced this and had to contact the consultant to ask if they can contact my GP to sort the problem out. Sometimes it causes friction between the consultant and GP but needs must.
When I moved to a different area, still in England Yorkshire my GP stopped my T3. Eventually after health went down hill found a different GP, same practice, who agreed to send me to an endocrinologist who I had discovered via a friend prescribed T3. He went through my notes and said the GP should never have stopped it without a referral to endocrinologist. Result he put me on a trial which said was allowed under the rules and said I obviously needed T3 as well as thyroxine so contacted GP who continues to prescribe it 2 years later. He told GP must not be altered without referral to him. Hopefully you’ll get a result
Not sure if you have access to Mexico pharmacies in UK. But you can get T3 (Cytomel) online thru them.
I have just tried to track down my old supplier in Mexico but cannot, I have just emailed another one and will send you a private message if I get the answer OK They are both online.
Which srea are you in, Devon only allow 10mcg T3 for all patients regardless of clinical need. Our local clinical lead endo is only concerned with her budget (as are most of them). Anyone over 10mcg have been called by the GP for referral back to that endocrinology team to have it reduced to 10mcg. Patients records have been searched without their permission (data breach) and if they are on more than 10 have been contacted to have it reduced. Some havent been caught up with yet.
By the way T3 has been steadily reducing over the last few months and there is a new one out which costs £55 for 28 tabs, stillvtoo expensive but beter than the originally inflated price of nearly £300!
Its ridiculous they dont take patients' insulin or heart drugs because of cost.
Good luck!
JaneCxxx😁😎❤
Not quite true Jane...........the restrictions on what you can prescribe is across the board. Its meant to drive down costs but in their little minds they forgot that most drugs are around for a reason so it has caused other costs to rise!! These days if the approved drugs dont do the job you will be told there is nothing more they can do. This is why you see people crowd funding......We say the NHS is there for all but these days its an increasingly restricted service.....
shawsAdministrator
See your MP if it isn't restored. Notify your GP that you will have to contact MP as your T3 has been removed and it is necessary for you to have no symptoms and needed for your wellbeing.
As far as I understand, it has to be an Endocrinologist who has to prescribe T3 first and then GP continues.
You'd really think that it is the GPs who pay 'out of their pocket' for important medications to restore patients health and wellbeing.
My pharmacist warned me this would happen several years ago as several patients did have T3 removed in our area.Like you I take 10 mcg T3 together with T4 which makes a huge difference to my well being. I went to every review well armed with the NICE guidelines and it wasn’t until a phone appointment in lockdown that a new young GP tried to stop it. I insisted I needed referring to an Endo to make that decision having been stable for 15 years. He backed down and dropped my T4. Too far but that’s a different story. I made a formal complaint to the practice manager and a different GP agreed with me and my original endo so I’m now back on sensible dosing. Practice managers are involved in drug budgeting so I’d support the other people here - don’t give up, quote guidelines and put your complaint in writing.
Yes the practise manager is the person I contacted when a new GP tried to meddle with mine. He was stopped and had his knuckles wrapped by the practise team. Am sorry to say this but there are a lot of idiots out there who are incompetent.......one new GP I had recently didnt know basic heart medications common in GP Practise and mine had been precribed by a consultant......and she nearly stopped them though sheer ignorance as she thought they were all the same! Didnt bother to check her book! I had to explain to her the purpose and function of each one. I have zero faith in GPs now. There maybe gems out there but they are a rare breed. They dont care about the well being of their patients.....are a 9-5 breed who regard anything outside those hours as abhorant and will happily wash their hands of you. When I went through chemo the GPs were horrified when I approached them -they had no sympathy at all , callous in their attitude and told me I shouldnt bother them but trail up to a hospital miles away when really poorly for something they could prescribe.. Shocking!! Told my oncologist -he was horrified. That was 8 years ago and they've gone downhill even further since then. Covid has meant they dont see anyone face to face even now and you cant choose a doctor to have a phone call with. Also they just ring you when they fancy and expect you to be available. Honestly the lack of regard is mind blowimg -especially for a so called 'caring' profession!' I dread any contact with them. I would move but the plus is that they have been willing to prescribe ndt and if I move that may change and it also may not be any better!!
I may need T3 but was told by my GP it isn’t available on prescription anymore, have to pay for it
Hi, I don’t know if this will help, but I have just seen an Endocrinologist for the first time today. He has prescribed T3 for me to take alongside the Levothyroxine (which I have been on for 2 years ish)
He also told me that GP’s are not prescribing it because whoever sells it to them has hiked the price from….wait for it…..£18 a month per patient to…..£500 a month per patient!!!!! It’s €18 in Germany and a private prescription ( which I am getting) will cost me £40 a month from my Endo. That’s a lot, but it will be worth it, if I feel better on it.
I'd be super annoyed if this was me. My GP will not prescribe T3 anyway. Had to go all the way to PCG to request it. They said no, GP not qualified to administer or oversee Liothyronine! Have to get it from my Endo at Hosp, which happens to be in different health authority. To me it was all a pure money saving move.
I suggest you start a discussion with whoever removed it and find out why. Then further discuss how long you’ve been on it and how you are feeling no longer on it. Captain Obvious to the rescue……
Your GP has no right to change or withdraw your medication without consultation or explanation. I would write to the practise manager and formerly complain about this: that no consultation has taken place. I would point out the length of time you have been on the medication, that it was recommended by an endocrinologist and you are well on it & bern on it for 20yrs. I would state that to remove it will cause you harm and jepodise your health. Ask for the practise manager to investigate this as matter of urgency and to reinstate your liothyronine whilst the investigation is carried out. T3 should not be stopped without the consultation and recommendation of an endocrinologist. Request your letter to be put on your medical file. (This will worry them as they worry about litigation...)State how worried you feel about what has happened and ask her/him to contact you as a matter of urgency so you don't run out of vital medication.
Its a real disgrace & just shows what a liability doctors can be! I am so sorry this has happened to you. I had a GP who didn't know her basic pharmacology & thought I was on 3 blood thinners so was about to stop two of my heart meds. I had to explain the function of each one to her! She had the grace to apologise & said am so glad you told me I wouldve made you very ill. Indeed!! 🙉🙈
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