We are all entitled to dignity because we possess certain ethically important features. One of those human features is that we are knowers. We know things. We learn. We make sense of what we know. We interpret our realities and the systems within which we have our being. If this feature is not respected, one's dignity is violated. There is a kind of knowledge practice we may call dignity-based practice.
It looks as if they are confusing dignity with respect!
We are all entitled to dignity because we possess certain ethically important features
Is dignity not ours to maintain or lose , instead, are we not entitled, as human beings, to be treated with respect ( by those treating us)
If this feature is not respected, one's dignity is violated
Perhaps, in medical terms, when we hope to be treated by others so that our dignity remains intact ....once we are dead and can no longer maintain our own dignity.
There is a kind of knowledge practice we may call dignity-based practice.
Or, treating the patient with respect!
Maybe it's just me but I'm not optimistic about this use of the word dignity in this context
Evidence-based medicine has been a wholesale movement - way beyond the general concept of basing medical practice on evidence.
It is in part where the "80% of patients did fine on T4 only, therefore all patients will do well on T4 only" comes from. And the insistence that TSH must be in the reference interval.
You cannot prove no-one needs T3. At best, you can say that no patient in a particular cohort responded positively to T3 in the specific regime trialled.
It lifts observations that might well apply to many or most and uses them to justify shoe-horning for all. It ignores so-called anecdotal evidence.
EBM is not always based on good studies though. That is why so many T3 studies give results that I find absurd. EBM is a failure, in my opinion.
Once someone has published a study/research paper/report in a peer-reviewed journal it often acquires the status of being gospel truth, even though few people read more than the abstract and the results.
Peer-review itself is also suspect. The authors of a paper may have used their friends as peer reviewers. Reviewers aren't always going to be independent.
If you look at ME research it is almost all based on CBT and exercise using the biopsychosocial model, which (despite the name) ignores the biological and rests almost completely on manipulating someone's psychology. There are some BPS methods which involve teaching people to lie (in fact the lie is insisted upon) and then using the lies as reliable results. (Lightning Process is one example.)
Objective outcomes (in ME research) are dropped if they don't give the results that the researchers were hoping for. Research is usually based on subjective outcomes which are hugely prone to bias issues.
Numbers of research subjects are often too small so the results are not reliable anyway.
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Some time ago Lorraine Cleaver tried to get better treatment for thyroid patients in Scotland. Despite years of effort I don't think she got anywhere and eventually she gave up. For anyone who is interested the papers used by the medical profession to back up the status quo (no T3 and no NDT for anybody ) are listed in this link (pages 3 and 4) :
I went through a very few of the papers to see how they had been carried out. I still remember one of the most jaw-dropping ones (from 1970) had removed X mcg Levo from subjects' dose and replaced it with X mcg T3. (I can't remember what X was.) Can you imagine, for example, having your Levo dose reduced by 50mcg and it being replaced with 50mcg T3? Lots of patients would be on their knees with that with all sorts of heart problems e.g. tachycardia, severe palpitations, and possibly chest pain. Despite the fact the researchers appeared to know nothing about T3 their paper was used as part of the medical evidence used by the medical profession to "prove" that T3 was dangerous.
When I got my diagnosis of cfs in 2005(wrong diagnosis in my opinion as I'd been given a diagnosis of primary hyperparathyroidism in 2004 and both myself and a parathyroid surgeon think I may have had this condition since 2004).I was sent to CBT, what a total waste of time on both ends!!
I had server chronic fatigue, it took me all the energy I had to just put the kettle on, walking to the toilet ect..(still like this now even after thyroidectomy and on thyroid medication second diagnosis of primary hyperparathyroidism in 2020)
The advice the CBT gave me was...... exercise, jogging, buying a bike, Aerobics....I was a gym bunny before my diagnosis of primary hyperparathyroidism/cfs ...and tried my hardest to go back to the gym, I collapsed everytime 🤦
Then I managed to see a cfs specialist who explained very well how cfs affects you..saying we all have a tank of petrol a normal healthy person's tank will fill throughout the day, fill when sleeping, but a cfs patient's tank as a hole in the bottom so you never truly fill your tank , and the more energy you use the more petrol you will use up without replenishing it!!
Sending you into a rest period to enable you to partially fill your tank up...but never fully.
So you must pace your life to everyday tasks resting when needed, and after using energy, ie hoovering, cleaning ect..this I found did help with the fatigue a bit but not with my other symptoms frequent toilet trips,utter thirst,bone pain, palpitations, sweating (all symptoms of primary hyperparathyroidism)
So CBT never really understood cfs in my opinion 🤷
I was given CBT for depression a few years before I started taking thyroid hormones so I know exactly what you are talking about. CBT is a stupid waste of time.
I'm not depressed any more - I needed thyroid hormones, lower cortisol, and better levels of the nutrients so often mentioned on this forum.
This. I used to work contractually for a government agency trying to encourage doctors to embrace and practice evidence-based or research-based medicine / data-driven decision making. Completely agree that these terms are so often misused. It gets my heart rate up just talking about it! The evidence/data/research is only as good as the appropriateness of the research question asked and the parameters used for measurement. If the wrong question is asked and the wrong measurements used, the evidence is useless, even if it was a double-blind randomized control trial with a large number of participants etc etc.
It’s beyond me how little focus is given to the quality and appropriateness of the research question and parameters in informing the medical inquiry.
My podiatrist once said that evidence-based medicine often doesn't work in the real world. I can't remember the context, but I think it was something to do with stretching - sorry to be vague.
It has long seemed that integrity became something found in some old books somewhere, instead of the mainstay conduct and attitude of doctors, workers, indeed many persons. Seems this 'free-for-all, please yourself at any cost' attitude has become that handcart to hell!? 😢
It seems to me that the preferred 'evidence' in EBM has become almost exclusively statistical/numerical - hence the over-reliance on numerical data in thyroid blood test results. Patient experience is set aside. ('something else must be making you tired')
Responses I've had from various GPs over 20 years of feeling rough are that having a TSH just above range and T4 and T3 (when tested) bumping along the bottom or just below the range are 'normal'.
A couple of months on Armour from a private endo. are beginning to give me a different view of 'evidence', based on how I feel rather than my stats. Same problem as many here I guess - gaslighting in the service of EBM.
And also, so very often, misunderstanding statistics. Like treating the TSH distribution as Gaussian (often called Normal).
Failing to understand that, even if it were Gaussian, in order to define a mean for patients to be treated, you have to rigorously exclude any who have thyroid issues.
And, more challenging still, that there are no genetic or other contributions which affect the TSH in each individual. If, say, 25%of population have a gene the places their euthyroid TSH at 1.5, and 75% at 1, the mean would be around 1.12. Not a major shift, but when you look at varying degrees of hypothyroidism, you might see both groups having very different curves.
I really do wish GPS/specialist's would stop totally relying on blood work, of course in some instances where blood work show a very positive response like in cancer, heart attack diabetes hypo/hyper thyroid related illness in that the TSH,T3,T4 is way over range or under range then the GP/specialist can diagnose no problem, eventho they don't at times🤦
It's very possible for an individual to have a top end TSH with a bottom of the range T3 T4 and still have symptoms of hypo 👍
In the same way a person can have low bottom range TSH and top end (but within range T3 T4 and have hyper symptoms 👍
However the professional medical fraternity don't recognise this even when we present to these pros with obvious symptoms.
Myself...hyper had all the symptoms but GP said everything was ok!! I found out through my medical records he never even performed any thyroid bloods just the normal set of blood tests😠
I was graves thyrotoxicosis lost my full thyroid in 2019😠
But he did send me to every tom dick and harry specialist.. for fast heartbeat, sweating, headaches, insomnia, tremors ect costing the NHS a small fortune I'm sure 🤦
In the case of my ongoing primary hyperparathyroidism my bloods were obviously out of range on 4 occasions, but these tests were sporadic done incorrectly by my surgery not done together only 2 were done together which showed over range PTH very top end calcium, but they get one test back in normal range (eventho they were not.. both calcium and PTH being at the top end of normal not a good relationship between PTH and calcium, they dismissed me..they don't think they ever need to do any para/thyroid bloods again!! Like that saying "your cured mate".
It's doesn't work like that doc!! All bloods wether it be thyroid/Parathyroid can jump in and out of range and if you don't test regularly you will never catch it😠 dismissing a patient on one normal test saying "your ok" is tantamount to a miss diagnosis leaving the patient with very real symptoms and no treatment.
This unfortunately is our health service now!! I struggled all the time and have to fight to get blood tests, totally unacceptable 😠😠
I find a really annoying thing about the current situation is that 'evidence' seems to exclude how a patient feels. It's all about interpreting/misinterpreting the stats.
I'm sorry for your poor experiences. It's exhausting to think of the many people endlessly suffering on account of not being listened to and believed.
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