I found it difficult to grab a quote which avoided some political element. And my posting was not intended to be political but it is very difficult to discuss without falling into politics - one way or another,
This is pretty non-political:
He once summed up how to have a good bedside manner in the magnificently clipped imperative: “Shut Up. Listen. Know Something. Care.”
I think we could justifiably apply the below quote to treatment of thyroid disorders without being political?
'How, then, we go about deciding which conditions are treated and which are left untreated is “not about rationing – it’s about rationality, Haslam argues.”,
Leaving thyroid disorders untreated because they don't fall into some mythical 'normal' range is not rational!
He elaborates: “Do we know what the endgame is,'
Thyroid patients know that the endgame is to feel well and live well. Doctors frequently don't seem to see that as being more important than the numbers.
It is incredible how treatment is made more difficult by the current approaches.
Not a literal suggestion, but you could almost imagine a situation in which patients get loads of very low dose tablets (levothyroxine and liothyronine) and take what they want. Not quite right? Try a bit more or less. Different times. Anything else!
I doubt it would actually result in any more mis-dosing than we currently see.
I believe that one of the greatest problems in medicine is being hamstrung by the fear of litigation and the resulting timidity and protective groupthink as regards the suggested treatment. In no discipline is the outcome 100% correct, and this applies to medicine as much as any other. Yet doctors are pilloried for making mistakes, which if inevitable because of peculiar circumstances, should not necessarily be laid at their door. I think that in the case of thyroid treatment, we are dealing with long-term effects rather than life-or-death. This is a situation where long term complaints follow on, increasing the timidity and rulemaking of guidelines that become obligatory for all to follow rather than advisory, where a doctor can use their own initiative whether to follow or not. However, the absence of any biochemical teaching in medicine results in being taught small unrelated parcels of knowledge, where a broader understanding would be much more desirable.
exactly .. i wish i could sign a disclaimer for thyroid treatment. " i promise not to sue you for anything , if you promise to use your critical thinking skills and intelligence to adjust my thyroid hormone replacement based on my quality of life"
I've literally said this various specialists and they look at me like i'm crazy. (Even more crazy than they initially thought i was. I read it in my old endo's notes. He though i had 'some severe psychological problems')
yes ... some patients have very annoying 'psychological' problems ... like having a questioning mind .. and thinking for themselves .. and not having much faith in Doctors who haven't shown us any sign of using their own critical thinking skills.. or believing a word you said to them .
Yes it does really knock you when you first realise what they actually think about you ... i'm over it now , but i was bloody angry at first ... i now realise mostly medics will assume i'm nuts/ lying/ confused/ obsessed etc , it's just so much easier for them to write off anything they can't explain as that , rather than believe people and think about WHY /HOW they have such problematic results when treating what is (allegedly) a simply fixed problem of hypothyroidism . So much of what they are taught has the words 'patient compliance' in it somewhere , that i'm afraid they are conditioned to think anyone with an inexplicable problem is lying / confused /obsessed from the word go . Dread to think what 's been written about me after my last thyroid argument with GP... it has all been redacted. Notes i got when i did an SAR afterwards just said "lots of upset about XXXX XXXX XXXX XXXX XXXX XXXX XXXX"
Have dealt with it successfully in my head, by deciding that I believe myself , i'm objective enough and well enough educated on thyroid issues to have a reasonable perspective , and so i won't let them get under my skin and gaslight me anymore , especially since they often know less than me about it , and certainly haven't walked a mile in my shoes.
Tattybogle now that I am old I see a lot of these doctors/consultants are young - certainly younger than me. Youth in itself is obviously no crime but the power these people hold is breathtaking. However, many are immature, arrogant, clearly lacking in people skills, lacking in life experience as well as ‘doctoring’ experience etc. Politics (both big and small p) are what they hone for their career trajectories. Patients are just a nuisance getting in their way - and off course anyone who might take their jobs/get promoted above them/whistleblow them/do better research than them/limit the power of anyone considered below them/sue them. I could probably go on. They have a tough life. No wonder it takes up so much of their time. It’s a full time job just keeping an eye on their careers.
If we didn’t stand up for ourselves they’d have us in a black box by ignoring serious and eventually life threatening symptoms or giving us the wrong dose or the wrong medication leading to a multitude of other deadly problems, it’s pretty much baked into the system if you ask me for thyroid problems. I couldn’t give a toss about what they may have written about me in my medical notes because I was right and they were wrong where me having a thyroid disorder was concerned. So whatever they may have said said it was all a load of rubbish. I’m not wasting my energy on it. As for walking a mile in my shoes - it would have destroyed them, it was that bad. I got my life back and I intend to live to the full till I croak!
First, med students must to be taught correctly and adequately for the job they face.
It is unfair on them, that they are sent out into the big wide world of medicine to do a job, without the essential tools
The best I could achieve was to give my GP a letter stating that I took full responsibility for any consequences of my decision to self-medicate with T3 mono.
I now sail with no NHS safe thyroid harbour....that is my future....
And that of many like me
It need not be so!
I hope future generations of thyroid patients fare better!!
I certainly don't think we would if we were properly informed, had the ability to get tests if we feel over- or under-dosed, etc. Maybe have a Fitbit or Apple Watch to help?
I have dispensed with NHS medical guidance for my thyroid treatment and find it pretty straight forward to manage myself on NDT, but wouldn’t it be wonderful if we had real choice of treatments and as you say access to tests and monitoring devices so we could actively manage our condition on the NHS. They would save money in the long run doing it this way and it would help the economy by reducing chronic illness caused by the current protocols rammed down our throats.
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