Even though I was half expecting it I'm thoroughly disappointed by my GP's lack of interest and response to the Endocrinologist's recommendations for a trial of T3.Due to her refusal to refer me despite my meeting the criteria (2 abnormal thyroid blood tests) I had no choice but to approach a private Endo. He sent my GP 2 letters, one outlining his recommended treatment and the second letter after he had received my blood test results confirming his diagnosis that I have difficulty converting T4. He advised my GP that he would do the monitoring etc but asked would she consider prescribing T3.
I waited a couple of weeks and hadn't heard anything so I made an appointment this week to see my GP to discuss. My husband came with me to the appointment for support. My GP hadn't even read the letters that were sent as I seemed to have caught her off guard. She advised me that she was not able to simply write a prescription for T3 as she would have to discuss it with the prescribing board. I advised her that I was fully aware of this and that is why the Endocrinologist was asking for it to be considered and he was obviously waiting for a response from her.
She then went on to tell me the usual about how expensive it is, how unnecessary it is for the majority, that they can't open the floodgates for everybody to be demanding T3 etc etc.
The upshot is that I will have to pay for the trial and if it's successful then my GP will put a case to the prescribing board. Absolutely no guarantees obviously.
I advised her that I'm currently on the NHS waiting list to see a psychiatrist for treatment resistant depression and that I would be requesting T3 treatment from them. What surprised and disappointed me was that she was unaware that a psychiatrist can prescribe T3.
So, currently waiting for my private prescription and will start my trial as soon as possible. Here's hoping for a much happier and healthier 2025 for us all.
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ltimmsie1
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The NHS, like many public sector bodies has some very odd attitudes towards paying more in the short term for long term gains. I had a similar issue when trying to get them to prescribe low dose naltrexone for Fibromyalgia. I've ended up going private.
Yet the NHS was happy to pay for all sorts of tried and failed medications and therapies. I must have cost them quite a bit. Yet LDN has really helped me and its side effect free ( and not even expensive).
In your case especially with resistant depression how much do they think it will cost the NHS if you become severely mentally unwell and need intensive therapy or inpatient care? A lot more than a T3 prescription.
How many hypos eñd up on multiple medications, statins, antacids, blood pressure meds, antidepressants, heart meds because they had low T3 which led them to develop other conditions, how much does all this cost their precious budget? Its the stupid short termism that annoys so many of us.
If you have a private prescription you could contact Roseway labs who are a compounding pharmacy in London and ask for a quote. I think they are quite reasonable and we have some members who use them.
it's to be expected unfortunately . GP's are simply not allowed to prescribe T3 on NHS unless it is first initiated by an NHS endocrinologist... seen under the NHS .. which is of course a bit 'catch 22' if they won't even refer you in the first place. (your endo really ought to have known this ~ saying they will monitor if GP prescribes is never going to work , as GP is not allowed to say yes to that ).
unfortunately even if this trial is successful, GP will still not be able to prescribe on the NHS unless the recommendation comes from an NHS endo, seen under NHS, after a successful trial , on the NHS., not privately . So they'll still have to refer you to NHS endo before they are allowed to prescribe it ... but obviously having got that far, they might then be more willing to refer . until then ,unfortunately you are stuck paying for it yourself.
Note, just a heads-up ~ in some areas , but not all, prescribing T3 for 'treatment resistant depression' (by psychiatrists) is now blacklisted ..... it is not allowed in my area,( (lancs and south cumbria)..... even though they do now allow it to be prescribed for some hypo's. lancsmmg.nhs.uk/medicines-l...
hopefully your area has different rules than mine.
Even AFTER it is prescribed by an NHS Endo, a GP cannot prescribe it without applying for funding. My Endo tried to pass me to GP but they said no - so I am lucky that my Endo continues to prescribe for me.
There are non prescription sources of greek and turkish T3 called Cytomel and Tiromel respectively. You can source these online and its perfectly legal to import these for personal use.
They are potent ( not sure how they compare to prescribed T3 available via private or NHS prescription) but we have plenty of members who self source and its a much more cost effective option. Plus you can dose yourself accordingly, you arent beholden to the amount prescribed via your Endo. As with Levo we often only get prescribed a tiddly amount, not enough to improve health.
I will only go to a UK Pharmacy to source my T3 prescription. During my Endocrinologist appointment he advised me that there had been a recent fatality due to someone sourcing T3 from outside of the EU.
It seems possible that the case below is the one to which the endocrinologist was referring.
Liothyronine and a sudden unexplained death: cause or coincidence?
Suhani Bahl 1 , Peter Taylor 2 , Onyebuchi Okosieme 3 , Mike Stedman 4 , Adrian Heald 5 , Lakdasa Premawardhana 6 & Colin Dayan 7
Introduction: Levothyroxine monotherapy is the standard treatment for hypothyroidism; it is safe and inexpensive, restores thyroid function tests to within the reference range, and improves symptoms in most patients. However, some patients require Liothyronine (LT3) to improve symptoms, and there is less safety data available for this. Here we report a case of sudden death in a patient using Liothyronine and present a safety data review for Liothyronine and Levothyroxine using national mortality and adverse-drug event records.
Case Summary: A 42-year-old woman was found dead in her house unexpectedly, one morning. She did not have any recent illnesses or significant past medical history and no regular medication was recorded in her general practitioner’s record. However, she had previously seen a private practitioner and had been diagnosed with possible chronic fatigue syndrome and an ‘under active thyroid’. For these, she took sertraline, clonazepam and liothyronine, bought off the internet and dosed by herself. Post-mortem examination showed no cardiac abnormalities, but did show bilateral pulmonary oedema, focal hepatic necrosis without inflammation, and an atrophic thyroid gland. Serum toxicology was unremarkable. The medical examiner reported the cause of death as “Sudden Unexpected Death in the setting of (chronic) liothyronine use”. To set the coroner’s conclusion in context, we assessed national statistics for mortality data in Wales over the last 10 years (2013-2022), to determine the overall deaths attributed to ’unknown cause’ and to thyroid disease. We found that while deaths due to unknown causes are rare (n = 681, 0.185% of all deaths), deaths attributed to thyroid disease (excluding cancer) or thyroid medications, are even rarer (n = 101, 0.029% of all deaths). We found no death due to thyroid disease or thyroid medications in the patient’s age-bracket. Lastly, we reviewed the number of adverse safety events including deaths due to Liothyronine and Levothyroxine in reports published by the UK medicines regulator, MHRA, via their yellow card reporting scheme since the early 1970s. The MHRA reported 23 deaths associated with Levothyroxine with no reported deaths associated with Liothyronine. Both treatments had similar profiles for other related non-fatal adverse events.
Conclusion: While this case raised concern that LT3 may be associated with sudden death, our safety data review is reassuring, and does not support an association between Liothyronine and sudden death. Nonetheless, there is a pressing need for systematic studies on LT3 safety in larger populations.
Having read that, it appears to me that liothyronine (LT3) has an extremely good safety record. Even when you take into account that this was purchased "off the internet", with no further details, the quality of the actual product (e.g. being of poor or uncertain quality) does not appear to be to blame in the slightest.
Overall, I suspect we have had more deaths over the time this forum has been active due to failure of the UK medical system to supply appropriate doses and formulations of thyroid hormones - levothyroxine and/or liothyronine - than due to individuals buying their own without prescription.
I end up questioning the assertion "that there had been a recent fatality due to someone sourcing T3 from outside of the EU".
In an earlier reply, I tried to make clear that there are fake and unreliable medicines which scammers try to sell. And it is important to be extremely careful.
So the coroner didnt pick up on the antidepressant or the addictive benzo the lady was taking, both of which have a much higher fatality profile than T3, I'm struggling to see why the benzo was even prescribed for CFS. Its not an energising med. Quite the opposite.
I reluctantly take it for chronic vertigo. Its a drug I'm extremely well aware of. I use it sparingly prn and only take half the prescribed dose. But no they've jumped on the unprescribed " foreign" T3 as the cause of death.
Thank you so much that would be really great. I'm in Rhondda Cynon Taf and the health board is Cwm Taf Morgannwg. I was trying to find out if T3 has been blacklisted for use in Pschiatry as mentioned above. This was the ace up my sleeve for requesting a trial of T3. Since being registered at this GP surgery I've had 2 major breakdowns and countless other gut and hormone related issues which I strongly suspect are caused by poor conversion.I've had a look at Inform Formulary for my health board and in July 2024 they advocated the use of capsules due to cost effectiveness. This includes the 5mg, 10mg and 20mg capsules.I'm doing as much research as I can in preparation for the battle ahead.
I've found these links to your area's formulary. This seems to be the main site cttformulary.wales.nhs.uk/ (note their colour code system at the bottom)
And I found this from 2017, due for review in 2019, but I don't know if that happened. Search for Liothyronine (Control and F) to find the references awttc.nhs.wales/files/guide...
The cost of T3 has reduced significantly since then, as you probably know.
Sorry to hear - though not surprised - about the runaround and the resistance to prescribe T3.
With regards to the cost, in France Cynomel (sodium liothyronine - T3) retails for 4.49 euro for 30 pills of 25 mcg.
And L-Thyroxine Henning (sodium levothyroxine - T4), for example, retails for 7.88 euro for 100 pills of 137 mcg.
So, yes, on a pill-to-pill comparison the cost would be 2-to-1. But if it works for you, the benefits would more than outweigh the cost, which is not very high in the first place.
We've found that French pharmacies will accept prescriptions from other countries (in our case, Spain and Costa Rica). So... if all else fails you may consider taking a short vacation in France and try to buy Cynomel with a prescription from your private UK endo.
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