YOU! Yes - you over there who might be regarded as being "older".
It is YOUR fault!
THEY want to remove your thyroid hormone prescription. Just because you are older.
But THEY are having problems doing that and the problems are:
❗️patients' perceived need for thyroid hormone use
Your actual need is immaterial. It is your perception of your need that gets in the way.
❗️patient anxiety/concerns about potential side effects related to thyroid hormone dose reduction
You are not allowed to be anxious or have concerns about losing your thyroid hormone prescription.
❗️patient lack of knowledge, and misinformation regarding deprescribing
You are ignorant. You are misinformed about deprescribing. (And just who is doing ANY informing about deprescribing - other than medics and a few of us here?
❗️patients' trust in their treating physician
You absolutely MUST trust your physician. No matter any history with that person - or complete lack of any history.
OK - they do mention some physician issues.
Yes. I am absolutely angry.
Of course people - older and younger - are mis-prescribed. But if physicians are initiating thyroid hormone treatment without an appropriate indication, address THAT issue. Is it physician ignorance? Disagreement about what constitutes an appropriate indication?
Why assume that a wrong dose is always going to need to be reduced? Could not some be under-prescribed?
And not recognise that - while some might be willing to see if a dose reduction is beneficial - those deprescribed need to believe it will be reinstated if deprescribing has negative effects.
It is also entirely the patient's choice whether to accept the effects of thyroid hormone, whatever they are, or the effects of deprescribing. It is not any physician's right (and certainly not their duty) to deprescribe against the patient's wishes.
THEY blame us for being ignorant and not trusting our physicians. But they then publish this paper behind a paywall! Ignorance of this paper (and many others) is about control of access to information. Not about inherent ignorance, inability to understand, etc. Why should we trust anyone who enables this access control?
Physician-reported barriers and facilitators to thyroid hormone deprescribing in older adults
Brandon Moretti MD, Rachel Livecchi MD, Stephanie R. Taylor BS, Susan C. Pitt MD, Brittany L. Gay BS, Megan R. Haymart MD, Arti Bhan MD, Jennifer Perkins MD, Maria Papaleontiou MD
The abstract of this manuscript was presented as a poster presentation at the 91st Annual Meeting of the American Thyroid Association in Montreal, Canada.
Abstract
Background
Thyroid hormone is one of the most commonly prescribed medications in the United States. Misuse of and overtreatment with thyroid hormone is common in older adults and can lead to cardiovascular and skeletal adverse events. Even though deprescribing can reduce inappropriate care, no studies have yet explored specific barriers and facilitators to guide thyroid hormone deprescribing in older adults (defined as discontinuation of thyroid hormone when initiated without an appropriate indication or dose reduction in those overtreated).
Methods
We conducted semi-structured interviews with 19 endocrinologists, geriatricians, and primary care physicians who prescribe thyroid hormone. Interviews were completed between July 2020 and December 2021 via two-way video conferencing. We used both an inductive and deductive content analysis guided by the Theoretical Domains Framework to evaluate transcribed and coded participant responses. Thematic analysis characterized themes related to barriers and facilitators to thyroid hormone deprescribing practices in older adults.
Results
The most commonly reported barriers to thyroid hormone deprescribing were related to patient-level factors, followed by physician- and system-level factors. Patient factors included patients' perceived need for thyroid hormone use and patient anxiety/concerns about potential side effects related to thyroid hormone dose reduction, patient lack of knowledge, and misinformation regarding deprescribing. Physician- and system-level barriers included clinic visit time constraints, physician inertia, physician lack of knowledge about deprescribing, perceived lack of sufficient patient follow-up, and electronic health record limitations. The most prominent physician-reported facilitators to thyroid hormone deprescribing were effective physician-to-patient communication, and positive physician–patient relationship, including patients' trust in their treating physician.
Conclusion
Barriers and facilitators to thyroid hormone deprescribing in older adults were reported at multiple levels including patient-, physician-, and system-level factors. Interventions to improve thyroid hormone deprescribing in older adults should aim to improve patient education and expectations, increase multidisciplinary physician awareness, and overcome physician inertia.
As usual, only this abstract is available without charge.
The fact that you are not known for ranting is significant here. I can’t use the words here I kept repeating (elderly ladies well brought up don’t use the language I was using) whilst reading this post.
We need effective advocacy for the elderly and thyroid issues. I can’t help thinking - how is this nonsense even legal?
Talk about feeling trapped by our mighty half brained medics!
I’d like to organise a mass swearing protest outside a certain endocrinologists office! Cathartic tho probably not effective in the long term to put a stop to him
Helvella to wake up to this post I apologize in advance is just making my head spin. Who ever they are stating this is obviously still young and does not have thyroid issues yet. Do they think that when they get "Old-er" they won't want to be treated medically the best they can as the problems arise? Trust me they are not immune to getting Old-er and having medical issues Thyroid issues included.Everyone has the right to be Healthy and Well for as long as G-D gives us . Wishing Us All a Long and Healthy life with our Thyroid Meds.
Its so horribly paternalistic and patronising, isnt it. I thought the days of blindly believing and following what a doctor said, not matter how misguided or downright stupid you think they are, were well and truly over.
Freedom of choice, patient autonomy and an ultimate say in what happens to their bodies are extremely important to most people. Patients want a co operative and equitable relationship with their doctors,not a "do as I say" one.
Maybe someone should let the American Thyroid Association in on the secret as they seem to be blissfully unaware. The 1950's are well behind us.
It sounds very patronising and discriminating to me - the usual spiel, we physicians know whats best for you and you should listen.
Well, if they actually had a clue and treated their patients appropriately, people would feel good, have a decent quality of live and did not have to look elsewhere for advice on how to get better. And there would be less patients in their practices telling them that they don't feel well!
In my view, this is just another justification for bullying people to reduce their dose on the basis of a low or suppressed TSH, without taking into account T4, T3, how the patient feels and without any other risk assessments. And many hypothyroid patients are under-treated in the first place, so encouraging to reduce their medication further just because they are older is wrong on so many levels. And if you need a certain level of medicine to feel well, it is not a 'perceived' need, it is an actual need!
Thanks to the internet and forums like this, patients are much more informed and can be encouraged to push back. It is a struggle though and the last thing we need as we get older is having to fight yet another battle.
I'd been wondering which one of my daughters (living in three different countries) I ought to move in with when I get too old to stand my stand against the local doctors.
But this is not a UK survey. And I know Canada where the conference took place is not a great example of best practices. All the same, the idea seems to be spreading by the year that older people don't deserve a level of care and treatment required to keep them functional.
I'd have loved to do the follow-up survey, and find out if the respondents would be perfectly fine with keeping their own mothers and fathers and kids under-treated? Especially for something that really doesn't cost a fortune to treat properly.
I might need to medicate with a double Scotch tonight...
' find out if the respondents would be perfectly fine with keeping their own mothers and fathers and kids under-treated?'
If they haven't had real life experience of actual thyroid issues, either themselves or in family members, then they'd likely say yes, they'd be fine with it. The level of misunderstanding in the medical profession about the impact of too little thyroid hormone on the brain and body in day to day real life, is astounding. They just do not 'get' that it can lead to a totally unnecessary, permanently sub-standard quality of life that is very, very real.
Every prescribing/deprescribing physician should be given a copy of 'Cold Storage' by Oliver Sacks, (and be forced to read it) as part of their endocrinology course. That might help them to at least begin to understand the impact of too little thyroid hormone.
"Cold Storage" was published in Granta magazine and, more recently, in Oliver Sacks' final book: “Everything in its Place: First Loves and Last Tales.”
Mentioning so that anyone interested could try to find that in a library.
UK details:
Publisher : Picador; Main Market edition (2 May 2019)
Language : English
Hardcover : 288 pages
ISBN-10 : 1509821791
ISBN-13 : 978-1509821792
Available secondhand starting around £5 from several sources including:
I wondered if their might be a benefit to writing to the corresponding author :
Maria Papaleontiou MD
Division of Metabolism, Endocrinology and Diabetes, Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan, USA
Institute of Gerontology, University of Michigan, Ann Arbor, Michigan, USA
Correspondence
Maria Papaleontiou, MD, Division of Metabolism, Endocrinology and Diabetes, Department of Internal Medicine, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Bldg. 16, Rm 453S, Ann Arbor, MI 48109, USA.
Subject only to whether you have the time, motivation, etc., to do so.
While I don't write to authors that frequently, I have done so quite a number of times - with results ranging from a friendly reply to being ignored (or email did not reach them).
Well..... perhaps this is what they consider to be a useful way to get rid of us oldies who are the fortunate Baby Boomers who have had everything easy!!!!!! And if that's what they think, they have no understanding of how the "Life expectations " we had differed from those of later generations, who thought nothing of going out to eat as often as they felt like it, and had at least one holiday abroad. I could go on..........and on.....
Why do some thyroid patients have SUCH a battle to get treated well????? Perhaps because those in the medical profession who are having thyroid issues find that the basic levothyroxine suits them well.... and cannot imagine or don't listen to those of us who do not find that the case.
I have often thought one major problem with thyroid treatment for both hypothyroidism and hyperthyroidism is that treatment is given in "lumps" rather than given via tiny, tiny doses by needle throughout the day and night, to mimic the way that healthy people get thyroid hormones from their thyroid.
Dosing the way that people like us get it is bound to affect TSH, Free T3 and Free T4. So, trying to get our results just like those of healthy people is really not feasible, in my opinion.
It is quite astonishing that this is so universally and completely ignored, so much (in that now over-used phrase) the elephant in the room.
There are ways of delivering tiny doses - in research, if not yet for real patients.
Of course, when we take LT4, and absorb it, our blood levels of T4 rise very significantly. A fairly sharp peak, then fades until the next dose.
FT3 has a delayed peak - around 48 hours after ingestion of LT4.
When we take LT3, the FT3 peak is not that far away from the shape of the FT4 peak from taking LT4.
ALL of which is very unphysiological.
We buffer the worst effects - by binding the hormones to proteins in our blood, by actively controlling transport across membranes into cells, by pathways that dispose of excess hormone (sulphation, glucoronidation, and, for T4, rT3). But - mostly - we and everyone involved - ignores it.
Yes - we see people witter on about FT3 rising so high. But they use that as an excuse not to prescribe LT3.
We know that insulin-dependent diabetic patients that are on an insulin pump require far less insulin, as their glucose gets measured continuously and the glucose levels can get adjusted as and when. And these patients have far less hypoglycemic episodes and a much better quality of life compared to non-pump users, as their overall glucose control is much better adjusted - for example less insulin through the night or when exercising.
The same would be the case for thyroid hormones, as our requirements do vary throughout the day. So a once a day dosing for levothyroxine or even twice or three times a day for T3 might not be covering all your specific, individual needs throughout the day. I think there was some research going on into a sustained release of a LT4/T3 combination that would mimic a T4/T3 ratio seen in healthy individuals, which you can not fully achieve with once a day or even multiple dosing. It might still be years away, but there is some hope at least.
"Simon from Newcastle" got a permission to do a research paper a while back which you posted about. He applied to an office in a Glasgow, largely mental hospital, if you remember. His findings will be a UK duplicate of this American /Canadian debacle. The uk experiment in progress was getting older thyroid patients off medication, supposedly with a later option to resume if they felt the need, was it not?????
A Scottish forum member posted the other day that NHS SCOTLAND policy is now TSH only testing available to Scottish Endocrinologists!
Two papers that are both nothing more than a complete pack of lies 🙄 rubbish is rubbish no matter how much of it is produced but they’ll find a way to make it look like legitimate research - they always do.
" Patient requests for tests and treatments impact physician management of hypothyroidism".
"Results: Response rate was 63% (359/566). Almost half of the physicians reported that patient requests for tests and treatments were somewhat to very likely to being a barrier to appropriate management of thyroid hormone therapy (46%). ...........//....... Physician-reported patient requests included requests for preparations other than synthetic thyroxine (52%), adjusting thyroid hormone dose based on symptoms when biochemically euthyroid (52%), maintaining thyrotropin level below the reference range (32%), and adjusting dose according to serum T3 level (21%). Physicians who reported receiving patient requests for the former three unconventional practices were more likely to execute them (p < 0.001, p = 0.014, p < 0.001, respectively)".
I was 'biochemically euthyroid' for 7 years on levo and nearly died. I am not 'biochemically euthyroid' on liothyronine for 10 years but I feel 'normal'!
As a 70 year old woman whose Gp has just reduced my levothyroxine 8 weeks + ago, and then despite my letter appealing to reinstate it as it made my fibromyalgia much worse, wanted to put it down further to 50, I want to join the rant! Why the removal of hormone in the first place, it is not an addictive morphine drug? In the process of my levo.downgrading I did lots of research in scientific papers covering the lowering of TH/ relation to heart/ circulation, but didn’t record all paper details. One, but I don’t think is was the Simon Pierce one which I read some time ago, and I now regret not noting it, but it introduced the idea that over 70 women were perhaps not subclinically hypothyroid, unlike their younger counterparts. This was because they had found that some none-thyroid older women had naturally higher TSH. So it was really only a suggestion perhaps the newly tested 5.5+ TSH over 70s did not need levothyroxine…it did not suggest removing levo. from over 70s.who had long since been treated. Perhaps more work has been done proving the idea, but I did not come across it…
It appears to be like so many other things, an observation - that older people sometimes, even often, have higher TSH - should be enforced regardless the limitations of the original observation.
The simplistic assumption would be that older people have higher TSH because their pituitary is producing more TSH.
But, for most of our bodily systems, we see reduced function, not increased. Going against the flow with regard slowing down organs.
Therefore, what we should be doing is identifying why higher TSH levels are identified.
Suggestions:
The precise isoforms of TSH being produced shifts - there are multiple forms with subtly different characteristics - usually ignored.
The removal of TSH slows down leading to a greater accumulation of TSH.
The pituitary is producing less of the other hormones and there is, in effect, an excess of the ingredients required to make them all. Which happens to result in higher TSH for no positive reason.
Or possibly pituitaries produce more TSH because our thyroids become less able to produce thyroid hormones. In someone who has been taking thyroid hormones long-term, this simply doesn't need to happen because the thyroid output does not change (assuming terminal state such as removed, never there, wholly destroyed). So higher TSH wouldn't occur - and if it does, it can be interpreted the same as ever, as lower levels of thyroids hormones which might need to be addressed.
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