Hi,I am in total shock & disbelief to have received a phone call today from the Pharmacist at my GP's surgery - telling me that the CCG have been in & have told the surgery to stop my T3 prescription.
I live in Lambeth & i see an endocrinologist in Hampshire who agreed for me to have the T3.
(I went to Hampshire as this endo is on the list of having been known to prescribe T3, my daughters also live in the same town)
I've been on the T3 for over a year now & have noticed the benefits.
The Pharmacist said that they can offer me a private prescription.
Surely this isn't right.
I asked the Pharmacist for contact details of who came into the surgery to advise this, so that i can email them. She said that she will get back to me with them.
I am my daughter's support for her disabled little girl with severe neurological problems & cannot afford to back track with my health.
My daughter has alreafy had a seizure due to sleep deprivation with her daughter.
Would appreciate any thoughts.
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chrissie1996
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How interesting that the price of T3 has been dropping.The Chemist tells me that the T3 cost £75 per 28 tabs. It feels like everyone around the T3 subject becomes quite dramatic!
I haven't a tally tried splitting up the T3 into smaller doses, I will give it a try. 👍
Yes, I do have suppressed TSH. I always test them together via Monitor my health.
I follow the suggestion of early morning testing & 24 hrs after last doses.
I do test the vitamin D, Folate, ferritin + B12 annually.
I'm on cod liver oil (natural vit D), magnesium, beef liver for natural source of B vits.
pretty pointless as they only test TSH ….even though I get T3 prescribed on NHS …..and TSH is always suppressed….so by their own guidelines that should prompt testing Ft4 and Ft3
Well you can fight, perhaps the GP might have an opinion on their prescription being declined by the pharmacist? The whole situation is so silly cos this is motivated by price, the price of t3 the NHS sources is very high yet the actual price internationally is about the same as levo! A work around is to source your t3 from abroad, it's a bit of a drag but it's fairly cheap and gets you out of depending on the NHS and all the patronising nonsense which comes with it.
Fight it....the ignorance surrounding the importance of T3 is unbelievable.
We shouldn't have to fight for the medication that keeps us functioning ....they just don't/ wont get it!
I need high dose T3-only to function, it took me decades to discover this, endo insisted levo would do, it had nearly killed me....so I walked out, took control and now self medicate. I had no other option.
This should not be....it beggars belief!
I doubt any other potentially life threatening disease is so badly treated.
The price of what is an inexpensive medication went into orbit some years ago ...and the rest is history.
If commonsense and intelligence ruled I'm certain we could all be correctly medicated....instead, we are at the mercy of scaremongering, myths, misinformation and vastly over inflated cost.
Medics understood thyroid treatment better 100 years ago!!
Go back to the endo who prescribed your T3. .....phone his secretary. You already have a foot in the door!
I don't know about elsewhere but a few years ago in Scotland the advice became that if an endo decided a patient needed T3 then it should be prescribed.
But, the problem remains.! Not all endos understand when T3 is a " need".....yours clearly did when it was prescribed!!' Grasp that fact firmly.
the CCG have been in & have told the surgery to stop my T3 prescription.
That smacks of bureaucracy... not medical care!
Sorry, I'm ranting again...I wish we had the answer to what is tantemount to medical neglect
Hi DippyDame, (love the name)It is unbelievable ignorance.
My own GP admits that he doesn't really understand Thyroid function.
Clinical guidance nonsense is all they listen to,
not how us patients feel in ourselves.
Isn't it good that you had the sense to be able to manage to take control of your T3, otherwise it does not bear thinking about.
There are so many people who must struggle so much, as i did before finding this site.
Yes, 100 years ago you got all the Thyroid hormones in an animal supplement.
I had an ultrasound on my liver due to high ALT Levels. It showed that i had a granuloma.
I would of thought that this impairs my converting T4 to T3.
Cholesterol was very high before adding the T3 also.
The endo i saw just listened to me saying how much better i feel on the T3, he didn't seem that bothered & asked if i could see an endo nearer to home.....🙄
Unless the original T3 prescription was made by an NHS endo ( for a patient seen on NHS, not privately ) and then transferred to GP via Shared Care Agreement (if SCA was required by the local policy in the area GP was in) .. then there is nothing to 'fight' here ( unless you mean 'fight the NHS / NICE guidelines' , which is not a one woman job )
NHS guideline on T3 prescribing is very clear that NHS budget will only pay for T3 that was originally prescribed following NHS route .. privately initiated T3 prescription is not eligible to be transferred to NHS funded prescription , unless the clinical need for it is first re-assessed by NHS endo following whatever the local prescribing protocol for that CCG / ICB is .
The problem for chrissie1996 is that unless she was seen as an NHS referral ,then effectively GP broke the rules by agreeing to put it on NHS prescription in the first.. and that is why it has been stopped by his CCG/ ICB. It should have been continued on private prescription until the NHS/local policy route had been followed through NHS endo referral >>> NHS funded trial of T3 via Endo's NHS prescription/ or at least review of patient >>> then ,if trial successful transfer cost to GP to prescribe on NHS (using SCA if needed by GP's areas policy).
Some areas are effectively blocking this route, by not following the NICE guidelines properly , ie. not giving trials to anyone ,or not allowing prescription for 'new' patients, (because they are allowed to make their own local prescribing rules to some degree).. but that's a different fight ..... in chrissie's case, even if she was in area that was allowing new T3 prescription on NHS , if she wants an NHS prescription she would still need to get it prescribed via the NHS route.
if the NHS route WAS followed by chrissie , then she has would have something to fight, as there is a guideline somewhere saying that T3 prescription shouldn't be withdrawn by a GP without some endo involvement etc ..... but if not , GP was breaking (current) rules by prescribing it on NHS.
chrissie1996 ,.. it might be useful for find out what the prescribing rules were for your area at the time the GP took over prescribing it , how long ago was it and have they been changed since then etc .. if it was allowed on NHS when he started, then you have an argument that it should not now be stopped abruptly and an endo should be asked to review before anychages are made.
Are you aware of this document ,,it contains lots of useful resources/ links to current T3 prescribing issue in different areas ... one of them is a list of which area is doing what. and there isa link to report any prescribing problems you have in your area.
Hello tattybogle,Thank you so much for the most useful information.
My GP agreed to refer me to the Endo in Winchester at my request. He said that I could be referred anywhere & was very supportive. I subsequently had a face to face appointment with the Endo. He agreed to prescribe 20 mcg of T3. I told him that I had been taking T3 25mcg, self sourced from abroad & felt the benefits.
The Endo wrote to my GP to ask him to prescribe the 20 mcg.
I now have 6 monthly phone consultation's with the Endo.
The attached document looks very informative. I haven't yet found the link for my local area but I will keep searching. The GP letter was a good & a supportive example.
OK .. so if it was the NHS who initiated it ..then somewhere there is a bit of NHS guideline that says roughly "we want you to try getting most patients off T3 and back on Levo , but before a GP stops T3 they must involve an Endo and not just stop it themselves.. the endo can review and say of there is a specific reason why that particular patient should not be subjected to a trial of going back on Levo . "
I assume you could use that bit to get them to continue prescribing at least for the until they have consulted an endo about you .. presumably if it's not considered safe or reasonable for a GP to just decide to stop T3 without some involvement from an endo . then it's not ok for anyone else to just stop it .. especially if they are not even a Doctor.
Good job you have the answers tattybogle ...because chrissie's medics sure as h*** do not!
It's going to take a miracle to change the nonsense thyroid patients are subjected to right now.
We all have to fight through this mess as best we can but the establishment, Big Pharma and fiscal might are tough opponents.....they have the clout, if not the knowledge!
Go back to the endo who prescribed your T3. .....phone his secretary.
You already have a foot in the door as a patient of the endo.
I thought it was clear that this was an NHS, not a private, endo and that NHS guidelines would therefore apply. They are readily accessible on line
But, the first thing I'd suggest is that you need to establish who actually made that decision
The endo may not even be aware that your prescription has been withdrawn by persons other than himself...before going into battle, find this out.
it is up to the endo to make any decisions regarding your T3 medication. Was any reference made to a conversation with an endo.
I would want to establish that this is not just a cost cutting excercise by the CCG to reduce their expenditure
CCGs assess the health needs of their local population to make decisions about the health and care services they need, but...
To quote guidelines...
The withdrawal or adjustment of liothyronine treatment should also only be undertaken by, or with the oversight of, an NHS consultant endocrinologist. Where General Practitioners (GPs) are involved in such treatment changes this should be with NHS consultant endocrinologist support.
It sounds as if you may be on the receiving end of bureaucracy... not medical care!
First consult your endo!
If the decision was his then you do have a battle on your hands!
That the pharmacist didn't realise undermines its removal!
Not being in possession of the full and relevant facts before making a significant medicine changing decision should see the decision immediately cancelled.
(Even if, after looking further, they were to make the same decision.)
Absolutely. I looked at my prescription list & the T3 is still on there. There is also an appointment with the Pharmacist on there for monday at 4pm, I've not had a message to say that!!
I’ve been through this and can vouch for the fact that you have to fight and show you are willing to. First speak with your GP and emphasise that the Endo recommended to him that you be prescribed T3 for your medical need. Ask again for prescriptions to continue. Despite what has been said, GP’s can overrule a pharmacist if they feel it’s in the best interest of their patient.
Two. GP pharmacists were brought in to cut costs so to stop GP’s from prescribing expensive drugs when there are cheaper alternatives, however as said, a GP can insist that you have a particular medication.
Three - CCGs are administrators, not medics and have no right to just stop a medication without an “appropriate” alternative. If all else fails you have to take it up with them and ask for funding but you will need a letter from your Endo stating your need for T3.
Personally I feel that as they have given you another 3 months they have accepted that there is no suitable alternative and will continue until forced not to as they can’t just stop cold Turkey.
Thank you Star for this information. It encourages me to fight knowing how to approach it.The Endo did write to the GP last year for him to prescribe it.
The Pharmacist yesterday said something about getting a letter from the Endo, more or less to say the same thing again, I don't know what she was on about really & was in a bit of a state of shock at what she was saying.
Interesting that GP's can overrule the Pharmacist. She sounded very much at the mercy of the CCG.
I Didn't know that is the role of the Pharmacist as well, she did say they were stopping other meds.
I did wonder if the CCG's were medically trained & now I know that they are not,
it's pretty awful that they make such decisions .
Hopefully I won't have to take it up with them..🤞
Exactly, how can they just stop the T3. No advice as to how to taper off or be monitored. The Pharmacist more or less said as it was prescribed a couple of days ago, you can have it this time - I sent in my repeat prescription request on Sunday evening.
If you’ve got your meds this time do nothing yet. But as you’re going on holiday, you’ll need your next prescription a little earlier than usual won’t you.
If you’re threatened with withdrawal by pharmacist again , I’d be tempted to tell the pharmacist you require this information in writing with the names, professions, and registration numbers of all involved, within 5 working days. You require a prescription to cover the period of your appeal. Pharmacists are obliged to uphold “the duty of candour”. She just might back down…
I will give it a bit of space atm, as its nearly Christmas.Will probably talk to my GP after Christmas about it all.
As tattybogle has kindly given me the guidlines, i feel empowered to get the points across, which do say withdrawal of T3 has to be overlooked by the Endo & GP.
Good point about getting names etc., if it does happen that i need to speak to her again. I will also be quoting the guidelines.
I have to have a consultation (in person until Covid but by telephone ever since) once a year for him to write the letter signing me off on T3 for another 12 months. It’s the only reason I have anything to do with them now as my dear old endo, who first put me on T3, retired. His replacements are more diabetes leaning, but they can write the annual letter… and it means I still get my T3 prescribed.
PS. My endos are in England, but I and my GPs are just over the border in Wales.
Only an endo is supposed to change your T3 prescription, let alone stop it. All national guidance says that.
Are you on Facebook? If so, join ITT Improve Thyroid Treatment group - we have template letters to send to GP, Pharmacy, Endo, MP, etc etc which contain details of all guidance and parliamentary statements on the T3 saga
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