First, so that everyone knows about the research itself.
Second, so that anyone who does feel strongly can make use of the opt-out. While hoping that few, if any, use this opt-out, it is nonetheless right and proper that each and every former patient knows of this opt-out and, if they so decide, can make use of it in time (before December 31st 2023).
Link to the research award page:
Doris Godfrey BTF Research Award 2018
Morbidity And Mortality In Liothyronine Treated Patients: LT3 Outcome Study
Professor Colin Dayan, MA FRCP PhD, Professor of Clinical Diabetes and Metabolism, Cardiff University
Introduction
Thyroxine is the usual treatment for people with an underactive thyroid problem. Most patients who take thyroxine feel well on this. However a small proportion of patients do not feel well on thyroxine alone and some practitioners treat such patients with another drug called T3. Whether T3 works just as well as thyroxine remains to be proven and opinions are divided on this. However, a growing number of patients are prescribed T3, mostly from unregulated or independent medical practices. This is worrying because the long term safety of T3 has not been established and current guidelines written by medical professionals do not advocate its routine use in practice.
The current study proposes to investigate whether patients who receive T3 (liothyronine) have a greater long term risk of heart problems, strokes, and death when compared to those who are treated in the standard way with thyroxine.
We plan to carry out this investigation using data from the private clinic records of the late Dr Gordon Skinner comprising the details of over 3,000 patients treated over a period of 20 years. Since Dr Skinner’s death, the Vaccine Research Trust that he established has been the Custodian of the clinic data. Via the Vaccine Research Trust the data from these patients will be linked anonymously to information held in the NHS Health and Social Care Information Centre (HSCIC) regarding hospital admissions from heart disease and strokes as well as information on death. We will then compare this data to similar data in individuals that have only received LT4. We will be able to do this without knowing the identities of any of these patients or any identifiable health records going outside of the Vaccine Research Trust. On this basis, individual patient consent is not required. However, patients can opt-out from having their anonymised data included in the study.
Our study will be of importance to patients with thyroid disease. An increasing number of patients are asking for a trial of T3 or NDT therapy and attending private clinics, but the risks to patients of heart disease, strokes, and death with of this practice are unknown. If there is a significantly increased risk, as many endocrinologists suspect, then patients need to be made aware of the facts. On the other hand if the risk is not different from patients taking LT4 then it will allow us to undertake further trials to try and understand if LT3 could benefit patients with an underactive thyroid problem.
Link to the opt-out notice on the British Thyroid Federation website:
T3 safety study patient opt-out notice
T3 safety study - option for patients to opt-out of their data being used in this research
The BTF is funding a study at Cardiff University in which researchers will study the long-term safety of liothyronine in patients. They will investigate whether patients who receive T3 have a greater long-term risk of developing heart problems, strokes and death compared with patients treated with levothyroxine.
The researchers will carry out this investigation using the records of 4,000 patients treated by Dr Skinner’s private clinic. To protect patients’ anonymity, the researchers will receive no identifiable information about the patients involved. For example, the NHS number is removed from these records and date of birth is changed to year of birth.
If you do not wish for your records to be included in this study, you have the right to opt out before 31 December 2023. Please follow the links on the document below to opt out, as researchers are unable to do this on your behalf.
To me, it is good news that this is happening at all. At times it has felt as if no progress was being made over many years. Though things might have been happening in the background, we have not really been aware. At least there is now a formal launch of the work.
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helvella
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Thank you for posting this. I was a patient of Dr. skinner and I do not wish to opt out.
Nevertheless, I do not have great hope that good will come of this for thyroid patients, as we do not know how it will be conducted and whether figures will be accurate.
It seems to me that the intention of this study is to show that T3 is either dangerous or not necessary at all. I see it as dangerous for the future of T3 and all those patients taking it. I very much hope I am wrong.
Whilst on the subject of research, I'm posting a link to the current Government Petition for Research Funding by Dr Peter Taylor.
If you haven't already, please sign, and share as much as you possibly can petition.parliament.uk/peti... Give more funding for thyroid research and patients after price hike
Well, I'm not cheering. Why? His use of the word "drug" in describing T3. I quote from the introduction above ..."some practitioners treat such patients with another drug called T3."
And here I am, not an endocrinologist nor a professor in diabetes and metabolism, thinking that T3 is a hormone, naturally found in the human body.
While I fully agree that the terminology is poor to the point of being wrong and misleading, and does need to change, we do have to accept the reality that pretty much anything handled by a pharmacy is in practice called a "drug" (or some sort of appliance). And that includes things for which it is the wrong word.
I'm with 1tuppence on this too! I find 'medication' acceptable for replacement hormones, but not the word 'drug'. But you're right of course, these days 'drug' is used indescrimintately.
The fact that the wording says 'a small proportion of patients do not feel well on thyroxine alone and some practitioners treat such patients with another drug called T3.' implies that levothyroxine is also called a drug.
I think in their world 'drug' would be used. They call trials 'drug trials' not 'medication trials' or 'hormone treatment trials' .
At least the Cardiff team are serious enough to look at this data. They are much more approachable and open to looking for data and treatment that will help the minority.
Yes, there may be positives, and I do hope you are right. As others have said, without up to date information from how well people in the data now feel, and actually are, it's quite difficult to see how they can draw many clear conclusions.
My single biggest concern is the precise aim, as described:
The current study proposes to investigate whether patients who receive T3 (liothyronine) have a greater long term risk of heart problems, strokes, and death when compared to those who are treated in the standard way with thyroxine.
That is, they will NOT be looking even at the possibility of reduced long term risk of any disease/disorder whatsoever from receiving T3.
Of course, when they actually look properly, who knows what they will find. And, to be fair, they might pick up all sorts of things that none of us can confidently predict.
I am concerned that they are picking certain information about patients but may not pick up other, potentially informative and valuable information unless they specifically identify it in advance. It'll be a desk study with no patient input I expect. These patients may have other issues that influence the outcome eg genetics or other medical conditions. You can select data at the start of a study to give exactly the result you want 😕
Has T4 undergone such a study though? If it is a 'standard' in an operating theatre,is it really that dangerous? While on NDT, obviously with T3 in it, my blood levels have never been better.
Makes you wonder whether they realise that the healthy thyroid will be releasing T3 into the bloodstream too and if so, whether they’ll be advocating to find some way of stopping it doing so in healthy people… thereby creating a T3 free world! Orwell would have a field day!
I had my thyoidectomy so long ago (late '70s) and when I saw the name Dr Skinner on this forum a few years ago it rang a bell. I haven't been able to find a CV if his and where he worked early in his life, does anyone know? And was he even old enough to be a new doctor then? I can rarely remember the name of my surgeon but I saw a few members of his team.
Yes thanks I did read a lot about him a while ago. Possibly the name is a coincidence or I've remembered it wrongly. I'm gathering thyroid books while they're available so I'll get his too. I had a great one from Australia 20 years ago, had only flicked through it but it looked incredibly different from anything I'd read before, very patient focussed. I lent it to friend of a friend and didn't get it back 😕
I'm not sure how they can, in any meaningful way, extrapolate an accurate picture of the long term effects of T3 from this study.
The current study proposes to investigate whether patients who receive T3 (liothyronine) have a greater long term risk of heart problems, strokes, and death when compared to those who are treated in the standard way with thyroxine.
How many death certificates have stated T3 as the cause of death?
If not, how can they be certain T3 was the cause?
Given that the heart needs a lot of T3 will they investigate that lack of T3 may instead be the cause!
Regarding T3 the tone appears to be very negative....disparaging even.
Liothyronine/T3 is not a "drug" as is commonly understood but a bioidentical replacement hormone. The body cannot function without T3!
Semantics!
The belief, amongst T3 naysayers, seems to be that the body will correct any malfunction with exogenous T4. If that were to be the case can these naysayers explain why the addition of T3 can have such a positive effect on patients.....or is it "all in their minds"!!!
Like any other medication T3 needs to be used with both understanding and care. Misuse of T3 will cause problems in the same way as misuse of... paracetamol for example.
What do they hope to find from this study? That patients in the data base who were taking T3 died. That those patients had coronary disease. Ergo, taking T3 caused coronary disease!
That is nonsense!
However this research is presented, I sense a subtext that seems to suggest that they are hellbent on demonising T3 and for the life of me I cannot understand why.
Whether T3 works just as well as thyroxine remains to be proven...
This question suggests a basic lack of understanding of thyroid hormones
Like many here I have a personal stake in this whole T3 debate....and yes, I'm ranting again!
Without the introduction of high dose T3 I would now be unable to function...and may no longer be alive. I was very ill and in a very dark place after c20 years on Levo. And like many others here I have the lived experience of the benefit of T3 ....
Whatever the unknown long term effects of being prescribed T3 are I was prepared to trade any threatened risks for more immediate improved health.....but I didn't have that choice.
To improve my health I had to educate myself, self source T3 and self medicate. At age 78 I function reasonably well now despite the damage done over possibly a lifetime of very gradually decreasing T3 cellular levels. And a lifetime of health issues accompanied by numerous (mostly unhelpful) treatments both NHS and private.
I became my own lab rat!
There is no doubt that more research into the use of T3 is required.... to help treat more patients who are left suffering because their cellular level of T3 is inadequate.
This I would suggest is the area that needs to be investigated. Medical research has solved many former mysteries....
By profession I'm neither a medic nor a thyroid scientist but I'm fairly confident that there are many people coping with unresolved health issues that have developed as a consequence of low cellular ( not low serum) T3.
Will this research turn up something positive for the cohort of thyroid patients who do not respond to Levothyroxine....and who benefit from T3?
Or are we to be set adrift because current guidelines written by medical professionals do not advocate its routine use in practice.
Sadly I never did meet fellow Scot Dr Skinner, but I have huge admiration for the work he did and for the way he stuck to what he believed in the face of such adversity.
I trust this research will aim to prove once and for all that he was correct!!
Totally agree with you DD! If they want to do research like this why don’t they ask for volunteers instead of raiding someone else’s database? They hounded Dr Skinner to an early grave and now they want to use his data? Sounds to me like they’re still intent on discrediting the work he did with thyroid patients, none of whom I saw reactions from had a bad word to say about him, especially after he died.
They could just as easily have contacted ThyroidUK and asked for volunteers… I would have been one of the first in line to provide them with information on how T3 gave me my life back after 7 years suffering on their precious Levothyroxine and I can also provide evidence of no osteoporosis (via regular DEXA scans) or AF from daily ECG reading I do on my watch, even after 12 years on T3! But, I guess that will not be the information they’ll be looking for, will it? BTF helping thyroid patients??? Do me a favour! 🙄
I was a patient too and the thing that concerns me most is how old that data is and how they can now deduce anything from it without knowing what has happened since.
Like some others I have had to take over my own care since Dr Skinner died. After several years continuing with his recommendations I have changed NDT brand, changed dose, changed to T3 only, changed weight drastically, changed lifestyle, changed career.
None of this will be available in my NHS records even should they link them correctly as my gps are not interested and are only interested in levo which I have not taken for nearly 20 years.
HRT treatment will be on my NHS records ( no thanks to gp as they cant manage that either) and will they think about other hormone impacts - probably not.
But they will see I had a temporary arrythmia recently and so may link it to the NDT was taking under Dr Skinner all that time ago and join the dots incorrectly.
It does say "the data from these patients will be linked anonymously to information held in the NHS Health and Social Care Information Centre (HSCIC)". I accept I have no idea what the HSCIC holds.
But if it does not study what has happened over the intervening years, what use is it to know that some of us took Armour or T3 on his recommendation sometime many years ago.
Appropriate dosing with T3 will not give you heart problems. It might well improve heart health.
But that misses the problem - which is determining what is the appropriate use? Something many here determine by how they feel and testing (often private). And many doctors do by assumption (zero is the one and only best for everyone).
Not if it is properly understood and used correctly....then it is no more dangerous than other medications.
I put this to a medic recently ( informal chat) and he agreed.
The problem is that this remains largely anecdotal ( based on lived experience) while some people are calling for scientific proof.
Further, as human beings we are all very different with different dosing needs so stating specific dose levels may not satisfy the needs of each individual
Unlike machines we cannot be calibratedto a set point!
Liothyronine/T3 is bio -identical to the triiodothyronine/T3 hormone produced by the thyroid gland and is prescribed as a replacement thyroid hormone.....not as a top up to the level existing in the body
Unfortunately T3 has been wrongly used by some in the body building community which seems to have been ((partly) responsible for some of the scaremongering stories. Others ( appear to) have come from within the medical profession and to have been passed down as (unverified) facts which have remained undisputed amongst "decision makers"
Information re correct/ appropriate use of T3 is not readily available. I had to do a lot of background reading before I felt confident to use it. I explained this to my concerned GPs when I began to self medicate....they have come to accept( understand even) my decision.
Many people depend on T3 to achieve well being.....but are denied it!
The heart needs a lot of T3....so it is more likely to be the case that insufficient cellular T3 could cause heart problems.
Dosing T3 is undeniably difficult as much depends on how the body reacts. The old way of judging T3 requirement was to monitor signs and symptoms/ clinical evaluation and for those of us who need larger doses of T3 this still stands.
An old medic friend used to say, " Listen to your body, it will tell you if something is wrong"....that advice was sound!!
Based on my lived experience I do not believe T3 will cause heart n problems if it is used with knowledge and understanding....
Instead, I believe the problem is caused by a lack of knowledge and understanding!
But, I also believe that there are still medics who understand this but the system and current guidelines are tying their hands behind their backs.
Dr Skinner stood up and used his integrity....and very sadly we know how that ended.
I wonder how this research will pan out....hopefully it will vindicate him and allow appropriate use of T3!
I was hopeful(ish) until “as many endocrinologists suspect”…… On what basis? Mainstream do not even know anything about needs/dosage etc. They are happy with their simplistic version of their facts. Showing their true colours. They so want T3 to be dangerous. I am not that confident that they will go about their research properly. Seen so much poor research since becoming diagnosed. However it could be a move forward but if it’s just to bring Dr. Sinners work into disrepute I hope some practitioners will stand up and be counted - properly.
I think, in fact I am sure, that at least some of the medics involved have a history of prescribing T3.
(However, I do not wish to name names - at least partly because it is against forum guidelines. But also because I would be selecting names on the basis of partial information.)
I was one of Dr. skinner’s patients who thrived after treatment with Liothyronine. There were many, who like me, could then lead a ‘normal’ life. Dr Skinner’s treatment and knowledge was invaluable to me and to my daughter who was so ill when we first took her for a consultation with him. I would like to think that Prof Dayan will confirm a positive outcome in his research paper.
It really pisses me off when they say they're "worried". They worry about the wrong thing.
I would rather die 10 years younger having had a good quality of life than live 10 years longer but be exhausted, depressed and miserable. I'm sure most thyroid patients would agree.
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