The thyroid charities Thyroid UK and The Thyroid Trust, and the online groups ITT Improve Thyroid Treatment and Thyroid Support Group Norfolk are continuing to challenge the contradictory T3 guidance wording from NHSE, and adoption of the proper guidance by local ICBs. We need your support.
In the past 2 years, if you have had T3 refused or removed, or been told that local policy restricts your daily dose, please help us. Are you willing to share the impact on your health, wellbeing and daily life including the ability to work or care for yourself or your family? Please comment below.
PLEASE add the area you live in, and the date/s this happened to you.
We will be sumitting joint evidence to NHSE and Department of Health & Social Care. Information will be shared anonymously.
Written by
TaraJR
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Ten years ago, when I mentioned to my GP I should really be prescribed T3 in combination therapy with T4 and needed to be referred to an endocrinologist, she told be blankly that their surgery would never agree to prescribing T3 because of cost, even if I found an endocrinologist who would recommend the treatment. My surgery is situated in North West Leicestershire. I requested an appointment with an endocrinologist at the local hospital (situated in Derbyshire, in Derby, because the hospitals in Leicestershire are much further away, so patients tend to go to Derby because we live on the county border).
To my astonishment, I received a letter from endocrinology in Derby stating they would not prescribe T3 …. Therefore no appointment given. INCREDIBLE. So I decided to see a more unlightened Endo (did my research and GP also suggested his name) and went to see him privately first. He listened carefully and said he didn’t understand why I had not been prescribed T3 after my thyroidectomy in 1980… wondered how I had coped… It was quite a struggle! He then saw me at a Leicestershire hospital under the NHS and suggested a 3 months trial of combination therapy. I explained my surgery wouldn’t agree… he told me he knew about the problem with the surgery refusal to fulfill T3 prescription, so organised for his hospital pharmacy to do so. It’s only thanks to him I was allowed to be prescribed T4/T3 combination therapy. If I move away I probably won’t be prescribed this combination therapy.
Hello - sorry edited to add the area I live in Kent, and the dates were over a period of about 3-4 weeks in Jan/Feb 2025d
I went to my gp to ask for an increase in T4 to 75 from 50 as my blood test seem to point to a difficulty converting to T3 but slight improvement from when I was on 25mg. My gp was reluctant to increase further worrying about overdosing me on T4 and thought that T3 might be better. He referred me. I went to see a nhs endocrinologist privately. Who did not want to provide me with T3 and did not agree that I am woefully under medicated. He sain that all my symptoms could been down to menopause. I have been treated by a dr and consultant for menopause and my treatment for this is I think accurate. The endo eventually agreed a small increase 75/50 alternate days. I have been on this for a few Weeks now and don’t feel any different. I’m completely sick and tired of feeling sick and tired. I’m thinking of trying a naturopath.
You need a private Endo from Thyroid UK who does provide one with T3 when all the evidence is there from the blood tests!! That's what I did+got my life back!!
I think so but my gp says I’m on the right dose for my weight. My Dad was on 100mg for years and didn’t feel right until he got to that level and I do think I need more. The difficulty is actually getting it from the nhs. Yes, I checked about the endo and he is a diabetic specialist- you live and learn. Next time I see a specialist I’ll make sure it’s a thyroid one. Until I can get my gp to agree to increase I’m stuck. I think I may have to change my gp 🤷♀️
Blimey! I'm shocked that only 3 people so far have replied to Tara's post. Thought there'd be thousands of us. There are folk out there fighting on our behalf to help get T3 prescribed, so come on, shout out. If we don't, they can't help.
not sure how to post the evidence , this happened at my face to face appointment last summer don't think i would be allowed to post the actual name of the hospital or consultant . although i think naming and shaming would be totally in order , why should they be allowed to hide .
TaraJR my GP practice openly publish (online) the fact that they do not prescribe T3 because it’s ‘blacklisted’ by the local ICB. Can I send you a photograph of the page on their website? Is that enough ‘proof’ of the misunderstanding of the NICE guidelines by both the practice and probably the ICB?
Patients clearly are NOT informed that their NHS endo could prescribe (my experience drawn from being a member here and attempting on a number of occasions) but the GP statement is surely proof that the practice just don’t understand the guidelines and tell the patients in such a way they do not push for it.
I suspect the GP practice itself know that local endocrinologists will not entertain referrals for T3 and avoid as best they can, unless they get persistent patients.
My NHS endocrinologist has conveyed to me that he will be prescribing T3 once my heart situation is sorted. It’s now as sorted as it can be and I will be reminding him of his statement shortly.
Extremely surprisingly, my heart surgeons all mention the connection of my CVD as being connected to my hypothyroidism. NEVER has this connection been communicated to me by any medic before; although many have been challenged! Nobody of course will make a direct connection but that has been the conclusion since I appear to be otherwise, a ‘healthy’ patient. At 72 I have been described as “young and strong”. Another issue many of us on the Forum are up against often. We don’t look like there is anything wrong with us. No empathy for us.
I have a feeling this T3 prescription (if forthcoming) is going to “put the cat amongst the pigeons” as there are NO prescriptions recorded for T3 in my region.
However I hear there are already great changes afoot locally, with an important change of personnel. I am just waiting to see how much and how soon this might become effective.
I have had problems getting past the GPs as gatekeepers. Every time I try to bring up that I still have symptoms and that my T3 is low, I get shut down. This has been going on for 7 years. Finally I got my current GP to listen by making him read my story instead of me telling him and he referred me to endocrinology.
Unfortunately in my area, Gloucestershire, the waiting list for endo is over 300 days.
Post thyroidectomy thyroid cancer patients - patients who need to receive radioactive iodine treatment after their surgery will initially be started on liothyronine due to its shorter half-life and therefore faster onset of action than levothyroxine
Rare cases of levothyroxine induced liver injury - long term liothyronine prescribing may be supported.
My experience echoes JGBH in that my GP surgery is in North West Leicestershire and I was referred to an endocrinologist in Derby.
Over the past three years I have been told by my GP that my levels are 'within range' and T3 can cause issues with osteoporosis and the heart. Also, there is no evidence to support the use of T3.
I was referred to an endocrinologist last year as the GP suspected reactive hypoglycaemia (which I was pretty certain was not the case, but heh, what's another hoop to jump through ?) I didn't actually get an endocrinologist appointment as my blood sugar levels were stable. However, the report back to the GP stated I seemed over-medicated. Fortunately the GP ignored that so I didn't have a 'let's reduce your medication' battle. In view of the Derby endocrinologist response, I felt my only alternative was to pay privately which I did in March this year.
You ask about the impact on health, well being and daily life. I cannot really comment fully on the impact of adding T3 as it is early days for me but I will say I do feel some improvement and feel confident this will continue, albeit with some dosage tweaks from my private endocrinologist. Regarding how my life was affected when I was on T4 mono therapy - I'm fortunate in that I don't work and if needed to, would find this extremely difficult. My lack of endurance for any physical or social activity has affected my social life, my confidence has diminished because I can never be quite sure when my energy is going to disappear and I've had too many SAD days (Sofa All Day) and indeed BAD days (Bed All Day) because I've unknowingly run out of fuel just doing an everyday activity.
I find the whole business of withholding a medication that may prove to be life-changing, an absolute disgrace.
Thank you again for your efforts in trying to resolve this.
Hi Tara JR I was told no to T3 by the hospital last October I attended in Stafford that they don't do T3. My thyroid has atrophied and all the old symptoms have come back. Swollen joints, at risk of TED from my optician, extremely dry eyes & vision alteration, had small tear in retina last August with the consultant saying definable due to thyroid,infections, swollen throat, feel like I'm 90 and living in a fog, don't remember days or what's said, or where things are, I throb in every joint, extreme nerve pain. First told erratic thyroid 37yrs ago and get on with it. Only when voice sounded like pre-pubescent boy did I get T4 off GP in 2019 after a year of tests. Then took me 4yrs to get him to send me to the Endocrinologist after repeated requests. See registrar and nope no T3. Paying for private blood tests which show levels low again even though taking vitamins individually. I can't afford to purchase meds privately even if I got a prescription. Its impacted my life very badly, depression, hair loss etc.
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Need advise please before endo call as T3 above top range
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