I came across 'interesting' Youtube video where this particular doctor is talking about taking elderly patients off from thyroid medication.... youtu.be/pcWib5ySQh4?si=cx2... . (see 8 mins onwards) Some of us are trying to get on it...never mind coming off!
Do you need to be weaned off from thyroid meds? - Thyroid UK
Do you need to be weaned off from thyroid meds?
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Stillrambling
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34 Replies
•
RedAppleAdministrator
What an idiot! (Am being polite as it's a public forum 🤣)
He's possibly right about the other meds he mentions, such as statins, andtiDs, blood pressure meds etc. But the vast majority of people do not magically regenerate their thyroid by reaching the age of 65 and being weaned off thyroid hormone! 😡
I wish it regenerated at 65, would ne nice to have something to look forward to.
helvellaAdministrator
Elderly people (we are still people even if doctors call us patients - and do I now count as elderly?) are often on appalling combinations and/or doses of lots of things.
But I think there are a lot of questionable claims about thyroid medication and older folk.
Indeed there is a problem in going into anything with the attitude of trying to de-prescribe.
One almost trivial example. As we age, our ability to absorb vitamin B12 reduces. By the time we are actually elderly, it might be that at least the majority need to do something to enhance our B12 levels. But with our de-prescribing heads on, we are already rather assuming nothing should be added.
I'd be more likely to go along with things if they weren't so beholden to TSH-only testing.
I suggest (with no evidence at all!) that, as we age, our pituitaries become less able to produce TSH. Therefore, we might expect to see TSH reduce (or not be as high as would otherwise have been the case). So a high or rising TSH could be even more of a concern than in younger people.
Let's see them wear "right-dose" heads - rather than "reduce dose" ones. Even if quite often the right dose of some things is actually a lower dose.
Quite. And let's see the NHS taking a more functional medicine approach to thyroid patients by making sure all the vits are correctly aligned as well as the T's. Your point about B12 is very salient.
I can't believe how shortsighted the NHS is when it comes to thyroid issues. Diverticular disease, colon cancer, diabetes, heart problems, strokes. So many of these could be avoided if people were diagnosed and treated in good time, and yet they currently cost us all billions. And some people their lives.
I only hope that AI developments coming down the line and wearable tech will help folks like us in the next generation to make an early start and provided the necessary evidence for the medical profession to take our concerns seriously. But I guess that starts with training GP's and more endocrinologists better too.....
AI will make it worse, it learns from what it is told and so can easily exacerbate an already dire situation.
Blimey weaned off thyroid meds, sounds like its a dangerous street drug and not merely a replacement for something we naturally make, or at least should do. In the grand scheme of polypharmacy where most elderly people I know are on a veritable cocktail of medications.
I think getting people off thyroid meds would and should be a very low priority. When you see what many of them are on, statins, BP meds, meds for AF, insulin and many more, there are far more harmfiul drugs than thyroid.
I watched the video wanting to hate the guy… but his language was actually pretty measured and almost all his words are things we have all said here.
Cholesterol is not the boogeyman, antidepressants are over-prescribed. And when he gets to thyroid meds he actually doesn’t say much except people should check their blood test levels and make sure they are on the right dose.
Yes, ironic that thyroid meds were on the list there since in the UK the struggle is to get them in the first place!
Could be regional differences.
In the US the three most prescribed prescriptions are:
1) Atorvastatin at #1, with 2 other statins in the top 20
2) Levothyroxine
3) The top 7 Antidepressants - of which there are 4 in the top 20 and 3 more in the top 50
Since we know that statins and antidepressants are absolutely over-prescribed with a heavy hand, to see Levo at #2 is interesting. A critical mind would logically ask - for doctors who hand out the other two like candy … would there be doctors who magically have sound clinical thinking for all those Levo prescriptions?
It’s not as high a threshold in the US to get Levo.
I’d love to see the top prescriptions ranked for the UK and see where Levo falls.
Of course no one should wean off Levo when they are on it becasue their thyroid doesn’t make enough. But I bet the majority of people even in the US have no idea what their FT3 is l, and therefore have no idea if they are actually on the right dose. Would be interesting to see how many among the Levo prescriptions ALSO have been given antidepressants - because their Levo dose isn’t optimal.
Levothyroxine is well up near the top. But we have a singular difference. US products are available in many dosages so it should often be possible to take just one tablet a day. Whereas our limited UK range means many need to take two, three or possibly more tablets to reach their required dose.
Now, that might seem by the by, but it isn't. There seems to be no way of counting number of people in the UK getting prescribed levothyroxine as opposed to number of prescription items.
They might be able to do that at the level of, say, a GP surgery. But not at the national level. And the differences between the four nations also impact statistics. We can see prescriptions (well, prescribed items) for England quite easily - but not for Northern Ireland, Scotland and Wales.
Nice way to zero in on the core issue. This was from a webinar I watched - I have no idea how they counted it all up … directionally interesting.
97.9 million prescriptions =
20.2 million patients
If I was to guess the multiple in the US is not because of pill size but because the prescription refill is sometimes/often a new prescription number. Well, that’s how it is with me. Prob some need two for dosing - I started at 50, then got 100s and cut them to say money while I titrated. But there’s so many variables there’s no way to find out.
Ah! I forgot to mention that the way the UK counts prescriptions is different as well!
100 microgram levothyroxine 28 = 1 item
100 microgram levothyroxine 56 (2*28) = 1 item
100 microgram levothyroxine 84 (3*28) = 1 item
If you are on a dose of 100 and get a 28 day prescription, that makes sense. But no-one call tell whether 56 means a 56 day prescription, or a 200 microgram dose! Etc.
We went from widespread 56 and 84 day prescribing, through enforced 28 day prescribing (often ignored but had quite an impact) often back now to 56 or 84.
It all serves to confuse. Us and them! 
Well I'm elderly and weaned myself nearly off thyroid meds. Big mistake. Made me very ill. If your thyroid doesn't work you still need those hormones at an adequate level!! Do not try this at home!
I need them as I don't have a thyroid.
It seemed to me that as regards thyroid medication, he isn't saying reduce it for everybody who is elderly, more that a good doctor will closely monitor the thyroid function.
I've watched a lot his videos, and would be elated to have him as my GP.
I rather agree.
But the issues of inappropriate dosing of any medicines, at any age, are primarily down to prescribers.
Of course, the rest of us can contribute to it by not properly taking what has been prescribed, not feeding back, etc.
Words fail me 😩
Hmmm... Well when I was under-medicated (by 25mcg), I felt like sh*t, sweating, freezing, an awful experience. BTW, I'm well over 60.
Blimey does he come up for air, I'm out of breath just listening to him.
• in reply toGoldengirl01
😂
I really wonder if fluoride in tap water is affecting many people’s thyroids. 73% of American tap water has fluoride in it. I did once go down an internet rabbit hole looking at fluoride & I was shocked to find that very little or no testing had been done on the overall effects for a population.
It’s produced from industrial waste of all things. Seems that dentists have persuaded governments of it’s value but we know you can live a good life with fillings & false teeth but replacement thyroids don’t work as well as they should. Where has this epidemic of thyroid problems come from?
• in reply toBertwills
Whilst I agree with your comments about fluoride and its general impact on health, I’m not sure that there is an epidemic of thyroid disease or whether it’s just being better diagnosed. We may complain bitterly about medics failing to make diagnoses and give appropriate treatment, but I think that there is a growing awareness of thyroid problems.
If so, you would expect to see a difference between, say, England and Wales. (No fluoridated water supply by Welsh Water in Wales.)
Most toothpastes & mouth washes contain fluoride too so that would make the difference between the countries more difficult to ascertain. It just seems odd that so many peoples’s thyroids are malfunctioning now.
And current 'trend' of advice with dentists & hygienist is to 'not to rinse' after brushing as 'toothpaste contain all the necessary things to protect one's teeth...longer it stays on surface of the tooth, the better....' Or that is what I was recommended for my sensitive teeth as well as 'rubbing small amount of the toothpaste over sensitive tooth'. And yet, manufacturers instructions clearly state not to swallow it...how can you not if it is lingering in your mouth... 🙄
Sounds like a plan as I have no thyroid. What a doctor wow.
I have also had my dose increased, after I cajoled and asked the doctors to 'trial it' for 6 months.
I was on 150mcg daily I am now on 175 mcg daily.
On the clinically correct tests I was low end, but within guidelines. I said, I feel awful, all other bodily functions were failing i.e. Blood sugar UP, Blood pressure UP, liver function failing and BLOOD CHOLESTEROL LEVELS- UP.
All of them, triglycerides, HDL etc. I had excruciating back pain and was asleep on and off, 3 hours here four hours there etc. but was still always tired, my emotions were all over the place. I also have arthritis and the pain was horrific.
I said, please trial me on a higher dose of Levothyroxine, which is not a great synthetic med, but all the NHS provide in the UK.
It took me two years to convince them.
In the end they did what I asked. ALL ISSUES improved.
Do not take any notice of You Tube, if you feel ''not quite right'' either mentally or physically then keep on pressuring your health team. I am in the UK and so that would be the NHS.
25 extra mcg may not show up on bloods but creates a better metabolism for SOME, not all.
I also take selenium, and my wispy dry hair has improved.
I am 67 years old, 5ft 10 inches and 19.5 stones, very overweight but that is improving also. and been on Levos for 24 years.
I continually read studies on PUBMED and other sites for answers as I am not a doctor.
But I do know my own body. If it was NOT that then I would have kept on trying to get my issues resolved however it WAS that, so I feel reasonably normal again.
This really worries me. I hope I will never have a doctor like this YouTube guy. There are so many factors to consider, but with hashis lowering or, even worse, quitting thyroid hormones is deadly. The thyroid is shot, probably the more so the older one gets due to the continued inflammation, nodules etc. It will not miraculously recover and rejuvenate. This is most likely a time where TSH becomes even more unreliable than it already is. In my new found love for ai I decided to consult it. Here is what it says and that makes a heck of a lot more sense:
"Pituitary Dysfunction and TSH Levels
Low TSH Production: A weakened or dysfunctional pituitary gland may result in insufficient production of TSH, leading to low or inappropriately normal TSH levels despite the presence of hypothyroidism.
Inaccurate TSH Reflection: Since TSH is a pituitary hormone, its levels may not accurately reflect the thyroid gland's status in the context of pituitary dysfunction.
Importance of FT4 and FT3 Monitoring
Direct Measure of Thyroid Function: Free T4 and Free T3 levels provide a direct measure of the thyroid gland's hormone production, independent of pituitary function.
Accurate Assessment: These measurements are particularly valuable in detecting both overt and subclinical hypothyroidism or hyperthyroidism, especially when TSH levels are unreliable.
Clinical Symptoms
Symptom Correlation: Monitoring clinical symptoms is crucial, as thyroid hormone levels may not always perfectly correlate with symptoms, particularly in the elderly or those with pituitary dysfunction.
Holistic Management: Evaluating symptoms such as fatigue, weight changes, cold intolerance, depression, and cardiovascular health provides a holistic approach to managing thyroid dysfunction.
Management Strategy
Baseline Assessment: Establish baseline levels of FT4, FT3, and TSH, along with a comprehensive symptom evaluation.
Regular Monitoring: Regularly monitor FT4 and FT3 levels and adjust thyroid medication accordingly. TSH can still be checked but should not be the sole marker for treatment decisions.
Symptom Tracking: Keep a detailed record of symptoms and their changes over time to correlate with lab results and adjust treatment.
Adjusting Medication: Adjust thyroid hormone replacement therapy based on FT4 and FT3 levels and the patient's clinical symptoms rather than relying solely on TSH.
Practical Considerations
Individualized Care: Tailor treatment to the individual, considering their overall health, age, comorbid conditions, and how they respond to therapy.
Collaborative Approach: Work closely with healthcare providers, including endocrinologists, to manage complex cases, especially in the presence of pituitary dysfunction.
In summary, when the pituitary gland is weak, leading to low TSH levels, it becomes essential to focus on monitoring FT4 and FT3 levels and assessing clinical symptoms for effective thyroid management. This approach ensures a more accurate reflection of thyroid function and helps in providing optimal care."
Mind you, I think ai might be overly optimistic when it comes to working closely with a healthcare provider including endo. Many of us know how that can go.
I was told from the start 20 years ago, once you start on Levothyroxine it is for life.
Happened to come across the below studies without looking for it, but happens to be relevant to the above. The first one is new/2024.
For those in the US, where there is no hard and fast threshold for prescribing Levo, there are definitely people who are given it too quickly and some of those don’t need it.
To be super clear - I would guess that’s absolutely none of us. I too shudder when I read posts here for sub-optimally treated hypo folks who think the Levo is the problem as opposed to their underlying condition. And coming off Levo is an absolutely terrible idea and offensive to those of us who have to fight the healthcare system to be well.
BUT- that is not everyone.
In one of the articles below it says 25% of Levo prescriptions in the US are given with a single TSH result under 10. We all agree that in most cases a single TSH value of less than 10 should get some additional blood tests to confirm as well.
The studies only considered the following people to wean off Levo. I don’t think any of us would disagree with this clinically? Those who were subscribed with:
1) One TSH result with no symptoms
2) Mildly elevated TSH with no goiter and no antibodies
To understand the doctor in the video, it’s helpful to understand that in some cases in the US (25% of them as noted in the other study) that people in the US are indeed sometimes prescribed Levo too early or without needing it.
Again - that’s none of us and dangerous for most. And dangerous to the narrative when it’s mid-applied. But still a statistically valid question to ask.
I know this is a hot topic, obviously there are nuances, open to all corrections and replies. But do think it’s important to recognize that some people get Levo when they don’t need it even though, sadly, it’s not us!!!
Appropriateness of Levothyroxine Prescription: A Multicenter Retrospective Study
pubmed.ncbi.nlm.nih.gov/376...
Abstract. Context: Levothyroxine is one of the most prescribed medications in the United States.
Objective: This study explores the appropriateness of levothyroxine prescriptions.
Methods: A retrospective multicenter study was conducted on adult patients who were prescribed levothyroxine for the first time between 2017 and 2020 at three academic centers in the United States. We classified each case of levothyroxine initiation into one of three mutually exclusive categories: appropriate (clinically supported), indeterminate (clinically unclear), or nonevidence based (NEB, not clinically supported).
Results: A total of 977 participants were included. The mean age was 55 years (SD 19), there was female (69%) and White race predominance (84%), and 44% had possible hypothyroid symptoms. Nearly half of the levothyroxine prescriptions were considered NEB (528, 54%), followed by appropriate (307, 31%) and indeterminate (118, 12%). The most common reason for NEB prescription was an index thyrotropin (TSH) value of less than 10 mIU/L without previous TSH or thyroxine values (131/528, 25%), for appropriate prescription, was overt hypothyroidism (163/307, 53%), and for an indeterminate prescription was a nonconfirmed subclinical hypothyroidism with TSH greater than or equal to 10 mIU/L (no confirmatory testing) (51/118, 43%). In multivariable analysis, being female (odds ratio [OR]: 1.3; 95% CI, 1.0-1.7) and prescription by a primary care provider (OR: 1.5; 95% CI, 1.2-2.0) were associated with NEB prescriptions.
Conclusion: There is a considerable proportion of NEB levothyroxine prescriptions. These results call for additional research to replicate these findings and to explore the perspective of those prescribing and receiving levothyroxine.
Clinical Outcomes After Discontinuation of Thyroid Hormone Replacement: A Systematic Review and Meta-Analysis
Nydia Burgos et al. Thyroid. 2021 May.
pubmed.ncbi.nlm.nih.gov/331...
There may be plenty of folk around the world who were started on Levo without sufficient evidence of need, ... but the answer to that is simple ..... ensure doctors follow sensible guidelines and repeat tests/ do further tests over a reasonable timescale before initiating treatment.
if there is a problem with unnecessary prescribing , surely it should be dealt with from that end first , by educating those who are prescribing it without due caution , rather than by trying to take stable/old people off it?
The problem with "taking people off it to see if they need it" is that once you're on it the only was to find out how you will be without , is to play "let's see if you go very hypo for a few months" ... which is a rubbish game to play if you were feeling passably ok on it.
Wise wise words! Can’t imagine fixing the medical education curriculum anytime soon, not to mention the insurmountable influence of big Pharma money over patient health. A few months on this board should be required for all endo’s in training!
would they be incognito ... or in a cage ?
My diagnosis was based on several TSH tests - each one higher than the previous. And the final one had Free T4 as well.
I am quite sure that, had they done Free T4 all the way though, there would have been a similar (bit opposite) path for that.
Relying on TSH-only is a fundamental mistake. It is absolutely bound to result on both incorrect diagnoses and failure to diagnose.
Should be Free T3 as well. Of course!
Anyone who remembers how they felt before being prescribed levothyroxine would strongly disagree with having their thyroid hormone meds removed......no matter their age.
Life may not be perfect with levothyroxine, T3, NDT but it is a darned sight better than it was before!!!
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