just sticking this on a post so i can find it easily
Front. Endocrinol., 22 February 2022
Sec. Thyroid Endocrinology
Volume 13 - 2022 | doi.org/10.3389/fendo.2022....
Effect of Liothyronine Treatment on Quality of Life in Female Hypothyroid Patients With Residual Symptoms on Levothyroxine Therapy: A Randomized Crossover Study
sing it, sister!
Sadly useless because they didn’t blind it. A source of ammunition for those who oppose T3 therapy.
That speaks volumes about T3 deniers who rubbish what their patients tell them
Useless is a strong word. Good science can be observational, it can be a non cross over trial, it can be blind or not blind - it depends. Non blind is a weakness but not necessary a flaw.
It would have been so easy to do a double blind trial.
Good point.
Are you aware of this study?
If so, it might be interesting for others
pubmed.ncbi.nlm.nih.gov/269...
Liothyronine use in a 17 year observational population-based study - the tears study
Only one little nit-pick of concern, but in the first results bit they stated that the TSH in participants on LT3 was slightly higher at 1.33 mU/L compared to those on LT4 at only 0.61mU/L …
One thing all of us who do take LT3 is that the TSH drops like a stone as soon as we take it and it’s never likely to come back up.
The other area of concern is the median age of the sample group… just 42.9 +or- 9.7 years already having been prescribed LT4 unsuccessfully. I didn’t even get diagnosed until I was 50, after which I had to endure 7 more years of the ineffective LT4 until I was finally prescribed LT3 which finally gave me my life back.
I’m afraid I have to agree with jimh111 when he says the study will suffer in credibility from not being blinded and I would add the sample size (59 with just 47 completing both studies) and short duration at just 12 weeks.
The study DippyDame quotes would be far more useful, but it is encouraging to see that the scientific world is beginning to take Liothyronine seriously, yet sad to see they would handicap themselves this way… makes me wonder why.
Rant warning!!
I was diagnosed as hypo at age 45 after begging for a thyroid test. Almost 20 years later, when I was on my knees, an endo told me he couldn't interpret my original diagnostic labs! Having since learned a few things, it was clear those results showed a failing thyroid...long story in my bio.
I will never understand why thyroid diagnosis and treatment is so appallingly awful....and I'm not convinced it's entirely about money.
I think it's a lack of interest, a lack of recognised, diagnosed and struggling patients ... and a lack of will.
If patients fail to respond to levo there are some complex reasons for that, and treatment to find a personal therapeutic dose, can be long and challenging, as I found out the hard way. Is it thought too complicated and time consuming to pursue for the few?
Like others, I've had to self diagnose and self medicate. GPs didn't understand. Endo didn't accept that I need T3-only or have a form of RTH...wrong on both counts.
My then GP thought I was about to kill myself...
There are brilliant minds out there in many fields, yet we have failed to train medics in even the most basic diagnostic techniques. Take the focus, after diagnosis, on TSH as a dosing marker. Science refutes this... instead, adopted, unverified beliefs take precedence.
Thyroid disease isn't viewed as seriously as others, it is for the most part a hidden disease drawing no attention to itself.....how many of us have felt on our last legs but been told, "Oh, you look well!"
How many are slowly dying behing closed doors because their voices are unheard?
How many have died with their demise attributed to other causes?
How many have taken their own lives because they could no longer cope with the debilitating symptoms?
How many death certificates record "Thyroid disease" as the cause of death....probably none!
Without adequate T3 the body shuts down....full stop!!
We saw JK Rowling donating £15m to fund the ground-breaking Edinburgh stem cell research centre and most recently the start of the new £6m Rob Burrow Centre for Motor Neurone Disease in Leeds
Research is vital but not of the poor quality evident in this review....it seems we need a trail blazer.
I firmly believe that T3 is key to revealing so many conditions....by one way or another, I for one would almost certainly be dead without it.
To me, T3 was an unknown concept until I arrived here 7/8 years ago when a small group of experienced and well informed members came to my rescue...I owe them so much! Thank you again....you know who you are!
Our younger son, a valuable member of society, has recently resigned from his profession, because he no longer has the energy to continue (history repeats itself!)....fortunately we have my experience to try to help him as he starts his own journey.
Considering historical details I'm now sure I inherited my condition from my mother and my maternal grandmother....and, recent labs show my son now follows on!
It should not be....the answers are in the hands of others. We can only hope that they take up the challenge, and hope that day will dawn!
Education and robust research are key!
Don't give up thyroid warriors!!
Rant over...sorry, I did alert you at the beginning!! xx
I think we’d be better of consulting a vet, to be honest… I took my 16 year-old cat to the vets a couple of weeks ago because he was eating us out of house and home but losing weight and he got his hyperthyroid diagnosis within 15 minutes of doing a blood test! He’s now on medication (Thyronorm) and recovering well.
I also encouraged all my 3 daughters and son to take a full thyroid test while they were still in their 20s and that’s already paid off for one of my daughters. She got a diagnosis and LT4 replacement almost straight away and won’t, hopefully, have to struggle unmedicated for the 10 years I had to before diagnosis.
I had a friend ( now departed) who was a vet prof and I would have accepted his diagnosis before that of a medic....always said I'd be better off going to the vet.
It's madness!
Hope your cat is progressing well...poor puss.
Yes, I had my sons take a full thyroid test because of my history....sensible move for everyone to have a baseline.
I liked the comment about consulting a vet ,gave me a laugh thanks
What a pity that your post was not an open letter to the Press DippyDame !
I'd probably be "burned at the stake" or sent packing on a broomstick!!!
Oh I thought that was a brilliant read ,you certainly nailed it thankyou for your rant ,you certainly was right about how well people think we are looking well they just don’t understand it ,thanks again
Amazing how so many of our stories are so very familiar. Thank you DippyDame for sharing your thyroid journey with us. Because many of us so very much relate to your story as well.I just wish they would learn from their past ignorance and rectify how they treat thyroid patients now.
Surely all evidence is useful, it may not be a formal trial but it is evidence. I would not have been happy to risk being put or putting my patients ( if I were a doctor) on the treatment that has not worked well (T4 or placebo) when there is a perfectly good treatment that is likely to help (T3).
DippyDame
thank you ... beautifully articulated, you need a name change to "notdippydame"
I wish my input was as short - sorry. It helped me to write this.
Our family is the same, notdippy, as my Mum (AIUT) and poor converter, so I completely understand, your concerns about your son . I am motivated too, I have 3 children to worry about and so much seems inherited. There needs to be massive change.
How do we as a group with TUK get things moving and prioritised ?
This group is amazing but it should be NHS clinics doing this work, it should be ingrained in the medical profession - but it is not. There is "nothing" or very little there.
How do we change that? It certainly seems a fundamental massive structural issue.
The first step is the need for change being understood - this starts with the great T3 debate and is where it is stuck. Some seem happy that 10 to 15% suffering is a good result overall and they would likely be miserable anyway ?
But it is of the order of 150,000 people ?? (2% of UK and 10% of them)
Link to 2 year old video debating this. 42:30 minutes into video - powerful statements putting the case for T3 treatment.
Peter Taylor wants large study to sort it out. Does anyone know the status ?
Double blind studies seem fundamentally flawed for UAT people seeing a benefit from T3. Am I being too simplistic or is it just being dominated by the ones who do convert well. Should you not be targeting the 10% or whatever it is who are struggling as starting point of tests ?
When a subset of poor converters because of DIO2 issues the result was near 100%. 20:34 minutes into the video debate. Is the double blind study stuff not distorting by the ones on monotherapy who do convert well. Are there other factors than this that have yet to be found ?
If you took a group unhappy with mono thyroid treatment with low ft3 and treated them with optimised combination therapy for a lot longer than 12 weeks, surely the answer would be loud an clear. T3 is fast acting and affects blood sugar and dose might need tweeking/splitting/fiddling. We know they would have lowish TSH already and T4 would be right near top of range before starting?
Even the NICE NHS 12 week trial is bizarre in terms of trying T3 combination therapy, if only it took just 12 weeks to improve!
T3 is not expensive as a drug, some weird commercial stuff seems to be going on with NHS even now price has dropped back. All these studies to show benefit seem more expensive than buying the drug at correct low price and doing large trials ?
My Mum is 25 years into this now and AIUT and gluten intolerant too - so your post resonates. with worries about your son. She saw Doctor Skinner in the early Days and he recommended T3/T4 mix but NHS endo said it was more than his job was worth. Dr Skinner was hounded it seems. Another 20 years of damage to Mum from not having enough T3 has resulted.
She was told TSH about 2 was correct, horrified when I shared numbers from here. She has suffered so much and much damage is done one presumes from being undertreated. We have tested her T3 and it is is 10 to 15 % of range. She is on blood thinners and has heart issues that make taking T3 more complicated now.
I am the same with poor T3 10 % of range when on Levo alone was not thriving, perhaps I should have waited longer but my T4 was top of range.
I am year into T3/T4 now and getting to near 50% T3 range, I am well generally. Without T3 I did not have my mojo back. Rightly or wrongly I bought/imported Tiromel T3 for £12 for a boxes of 100 x 25 mg and followed the learnings on here.
It is not an expensive drug on international market.
My heart is fine, my bones are fine. I used a ECG heart thing for a while. Kept an eye on blood pressure and heart rate. Went very slow.
It does not seem there are Endos to visit really - the TUK list is very very small for such a big issue and then you hear peoples experiences on here and think why bother ? Surely a set of guidelines for taking T3 could be written from the knowledge on here.
The issue is large in terms of sufferers, complex and not fully understood, treatment is a bit fiddly currently. Blood sugar, cholesterol, weight are indirect markers but nothing easy for them to medicate on quickly to see if metabolism at cell level, throughout the body.
Sorry it is long.
In the words of "NotDippyDame"
"Education and robust research are key!
Don't give up thyroid warriors!!"
Should you not be targeting the 10% or whatever it is who are struggling as starting point of tests ?
one of the better point's of this Norwegian study is that it targeted specifically the group of patients who had remaining symptoms . Which is probably why they got such positive results.
yes obviously it would be better if it had been double blinded (meaning neither patients nor treating clinicians knew who was taking T3 and who was taking levo) ,as this would put to bed the predictable criticism of 'placebo response / biased expectations' .
The researchers do explain their reasons for not blinding this study (mainly cost i think) and acknowledge it as a weakness.
That aside, what it did show very clearly is that the majority of those involved improved in most scores, (despite the relatively short timescale of 12 wks), simply by swapping their current dose of Levo for 1/3rd the dose of T3, with dose adjustments every 4 wks aiming for TSH within 0.1 - 1.5 ( one or two in each group did have it lower than that) ... and importantly they showed no adverse cardiovascular effects.
(and also that 60 % of them preferred it.. not that anyone seems to give a stuff what we prefer ...lol)
"In conclusion, treatment with LT3 monotherapy increased QoL compared to LT4 without inducing biochemical or clinical hyperthyroidism or adverse cardiovascular effects.... Treatment with LT3 monotherapy may therefore be an experimental treatment option in hypothyroid patients who suffer from residual symptoms despite LT4 treatment. However, long-term studies are needed to assess the long-term safety of this therapy regimen.... "
"Every little helps".....but thyroid patients who do not respond to basic treatment need much more than a little help.
They need a revolution!
They have had decades to carry out long-term studies.....the will is not there!
ever considered changing your name to RantyDame ? 
Absolutely not!
Alliteration lost!
Are you perchance suggesting that I rant too much?
Take care x
Nah ,.... just thought it would save you the need to issue Rant alerts, but i hadn't accounted for the loss of any Alligators.
....like Gabby in the Okiedokie Swamp!
aiming for TSH within 0.1 - 1.5
What did we learn about TSH from diogenes et al?
FT3 is the most important marker!
When I was first diognosed FT3 was routinely included in tests....then the "tweakers" took a backward step and we see the consequences here almost daily
"For the moment mechanical thinking has traduced medical diagnosis."
'Glass half full' and all that .....
they don't expect TSH to stay 'in-range' ... these researchers are obviously willing to accept that a lower TSH may be necessary / optimal for some .
they tested both fT4 and fT3 , and with more intelligence/ awareness than many researchers would ,ie. fasting in morning before meds 24hrs from last dose levo 14hrs from last dose T3 .
this team appear to have the interests of poor responders to levo at heart , yes it;s a real shame they didn't have enough money (or nouse ? ) to double blind it, but still, it's "better than a slap round the face with a wet fish" as my dad would have said.
it adds to the body of evidence that using replacement T3 is not inherently harmful and can significantly improve QOL for many people if levo doesn't cut it.
youtube.com/watch?v=9eHxF1mHhl
I agree it is a good study - just embarrassed I forgot it picked out people who were struggling rather than those who are well already
The link in my post was not very good. It has been on here before but it is a good discussion about T3 and evidence and highlights the "Gapping Gaps"
In that case I hope the powers that be listen to the scientists
I didn't actually mention double blinding,
My contention relates to the prominance given to TSH ....but I guess to stray far from that would raise eyebrows!
I take 100mcg T3-only....my heart is healthy (fairly recent scan) my bones are strong , cholesterol good, no blood sugar issues etc
Yet, I have various health issues which I'm convinced, from much reading, are the result of damage done by long term low cellular T3. Diogenes ( late lamented) once told me such damage is unlikely to be resolved. They affect my quality of life quite considerably....chronic UTI being the menace in chief!
I'll stick with DippyDame because...
Honestly...you didn't see our smoke filled kitchen yesterday, or hear the blaring alarms throughout the house after I burned a pan of prunes ...on the electric cooker. I forgot the pan was no longer cooking, as was usual, very slowly on our dusty old solid fuel cooker....recently removed and also much lamented!!
If that's not dippy.....
Don't apologise! I rant at length about T3 and haven't been dispatched in disgrace... yet!!
DD alliteration it is then ... I have gotten attached to Sleepman even though I am a bit more wide awake these days.
Read your bio - you are about my Mum's age. Sorry about your suffering with UTI, miserable. Mum suffers from swollen legs and is just not thriving. She has good and bad times. She tried a little T3 recently but was suffering from hip pain from something else and paused it for a bit trying to get better for a holiday with Dad.
I saw Diogenes presentation to Scottish parliament - he did and knew so much.
I think you might be right about currently lack of will for change at the moment.
I did not realise the recent petition to parliament for research funding, only managed 11,000 odd votes and failed to get debated. How many must be just fading away.
Education and robust research are key!
Don't give up thyroid warriors!!"
Thyroid Dysfunction and Sleep Disorders
