Some research on T3 monotherapy : I’m not great... - Thyroid UK

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Some research on T3 monotherapy

Hashiboy profile image
13 Replies

I’m not great with science but I thought these two related research papers from 2022 were interesting. The first is a research trial of T3 done this year and the second looks at how T3 treatment affected various tests on the women in the trial. Be great if someone more experienced in research could say what they think of it?

Frontiers | Effect of Liothyronine Treatment on Quality of Life in Female Hypothyroid Patients With Residual Symptoms on Levothyroxine Therapy: A Randomized Crossover Study

frontiersin.org/articles/10...

ncbi.nlm.nih.gov/pmc/articl...

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Hashiboy profile image
Hashiboy
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Hennerton profile image
Hennerton

I lost patience with these studies when I realised they were still trying to make patients fit themselves neatly into the TSH reference range, which anyone on T4/3 therapy will know does not work. Oh my goodness, I detest this dreaded TSH reference range. It causes so much misery. Dr. Toft agrees that to feel well, patients will not necessarily be within the range but as long as free T3 is not over range, all is well.

Hashiboy profile image
Hashiboy in reply to Hennerton

Hi Hennerton, sorry if that was triggering, it’s awful that so many of us have had bad experiences when we try to explain how profoundly Ill or even disabled we feel on T4 and get told we can’t because we have a perfect TSH score. I think there’s a small glimmer of hope things might be changing.These Norwegian authors start from accepting normalised TSH doesn’t equal being well and look at quality of life as the main measure in the trial of T3. In the second paper They go on to explore how other biological measures like cholesterol don’t improve simply because TSH is in range. I was curious what more scientifically minded folks here made of the studies in terms of quality and whether it’s the kind of thing to share with medics. Have a good weekend and hope you aren’t struggling in the heatwave.

Hennerton profile image
Hennerton in reply to Hashiboy

Forgive me but it did not seem to have a persuasive element that would change the mind of our doctors. They mostly know so little, it needs to be spelt out for them. The doctor who regularly makes sense is Dr. Toft but I have not seen him mentioned for some time. He is a great believer in T3.

shaws profile image
shawsAdministrator in reply to Hennerton

Dr Toft is an excellent doctor and is also physician to The Queen when she's in Scotland.

He is one doctor of the 'old school' in which they seem to have been taught how to diagnose patients through their 'clinical symptoms'.

We used to have more knowledgeab;e doctors who treated patients according to their clinical symptoms and they then prescribed NDTs (natural dessicated thyroid hormones) that contain all of the hormones a healthy thyroid gland would produce).

Unfortnatley those modern 'experts' we'd expect to be knowledgeable don't seem to be as they were withdrawn from being prescribed. I'm not sure if they've been reinstated.

NDTs were first prescribed in 1892 and from then on patients did not die due to hypothyroidism.

I think that Dr Toft may have retired.

I only recovered my health when T3 was prescribed.

T4 (levothyroxine) caused awful palpitattions - mainly during the night - and cardiologist took many overnight recordings as he was puzzled . He was contemplating putting an implant in my heart to 'see what was going on' but just then T3 was added to T4 and palpitations reduced. With T3 only they resolved altogether.

I didn't need an implant in heart .

I have now been diagnosed as having a Polyglandular Autoimmune Disease No.3. as I have developed pernicious anaemia, hypothyroidism, alopecia areata and vitiligo.

Hashiboy profile image
Hashiboy in reply to shaws

Hi Shawn, yes like you I could not get well on T4. It left me as I’ll as you for five years. My first try of T3 was with a doctor who was very kind but on reflection he didn’t know how to work out a dose for me. Take care.

Hashiboy profile image
Hashiboy in reply to Hennerton

Thanks Hennerton, I 80% agree. My experience with doctors has been that most seem not too informed, some I’ve seen have been willing to try to understand and a rare few have been very aware that T4 isn’t for everyone. I totally agree that one or two papers isn’t going to change the world.

Hennerton profile image
Hennerton in reply to Hashiboy

My experience has been that most endocrinologists know nothing and even the endocrinologist who actually gave me my first prescription for T3 knew very little about dosing. I was to be on the combo T4/3 for the first time but following his vague instructions was a disaster. He absolutely gave up trying and told me to do whatever I wanted, as he had no advice that would help.

I then went to the (sadly now deceased) Dr. Skinner, who started me off very, very slowly - complete snail’s pace and I followed this advice and slowly built up the T3 dose until I could work out for myself what to do. We could write a guide between us, with all our knowledge, because experience is the tool, not a half hearted piece of advice from an endocrinologist that he read in a text book.

Hashiboy profile image
Hashiboy in reply to Hennerton

That was my first experience too. The first endo I saw was great but left before I actually started taking T3. The replacement locum was kind and prescribed T3 but had no clue about dosing and I ended up worse for several months. I’d kind of given up and accepted my lot but luckily I was seen by someone who was much more confident in using T3. But you are right getting a T3 prescription is only the start. Hope you are still doing well.

Hennerton profile image
Hennerton in reply to Hashiboy

I am doing well, thanks but nothing replaces one’s own thyroid. I wish it were accepted as such, instead of fobbing us off with fairy tales about “ the wonderful little white pill”.

Hashiboy profile image
Hashiboy in reply to Hennerton

Absolutely agree with you there. It's a mystery to me why we're seen as being confused or mistaken or mentally ill when we say Levo isn't helping. I genuinely think there needs to be a research project into that.

susieibbo1 profile image
susieibbo1

I think it is interesting especially with docs who are more open minded about TSH being relevant (or not) as my doc is.

asidist profile image
asidist

I didn’t delve into the first study, but the way that they dosed subjects in the second study was egregiously inappropriate. It is common knowledge that thyroid hormone replacement therapies as available to us (this is a different topic, but I’m not convinced t4, t3, nor any combination of the two will necessarily be close to adequate for everyone) need to be dosed based on individual factors - including how the patient feels, blood levels, etc. All of the subjects in this study were dosed based on a single formula that just doesn’t work for everyone, and probably not even a majority of patients. The study ignores the reality of the complexity of hypothyroidism and its treatment. The authors may have meant well but they didn’t seem to do any good research into the real issues surrounding the problem (residual symptoms on LT4 monotherapy) or how to address them before coming up with a solution and wasting funds studying it. IMO the study unfortunately ultimately perpetuates misconceptions about how hypothyroidism and its treatment should be approached.

Thank you for posting this though, it’s good to know what’s being put out there.

Hashiboy profile image
Hashiboy in reply to asidist

Thanks for helping me make sense of it Asidist.

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