Systems can degrade - the endocrine system is n... - Thyroid UK

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Systems can degrade - the endocrine system is no different.

Charlie-Farley profile image
58 Replies

I put this in a string, but wanted to share as a post. I have no medical training only scientific. I think this makes me look at things differently. The medical profession need interlopers with a different slant. Diogenes being a perfect example. His rational critical thinking cuts through the buttery nonsense of the current stance by the medical profession on how to treat hypothyroidism.

Let us not forget Einstein trained as an accountant..….(and was dyslexic!)

I’m convinced not being diagnosed and THEN not being adequately treated ….for years even decades will ultimately lead to the deterioration of the ‘system’ for want of a better word. Once the person does finally get treatment (my optimistic hope for all) the ‘system’ may be so irretrievably damaged only high doses of T3 might rectify or mitigate.

This might not explain ALL instances, but I suspect a fair few. I’m utterly convinced my finding the forum quickly and then implementing the recommendations QUICKLY is the main reason I’m doing well on Levothyroxine only.

Looking at any biological or environmental system, if it is left to degrade you can permanently lose functionality. This not earth shattering knowledge. We all intuitively know this. Perhaps only earth shattering is the fact that this is not understood by the medical profession…..

58 Replies
greygoose profile image
greygoose

Totally agree with you on all points.

DippyDame profile image
DippyDame

Absolutely!

I'm now coping with the consequence of decades of wrong thyroid diagnoses and wrong medication.

Discovering, only in my early 70s, that I need high dose T3-only now means much irreparable damage exists. Thankfully it did resolve some symptoms eg brain fog

I don't think it's any surprise that early intervention is the answer....

And, yes!

Earth shattering is the fact that this is not understood by the medical profession

This amazing forum very possibly saved my life....it sounds as if has changed yours for the better.

Stay well!

Charlie-Farley profile image
Charlie-Farley in reply to DippyDame

Dippy it certainly has! And reading yours and everyone else’s posts has been the most enriching source of knowledge. By far the most significant factor on getting to grips with my own condition. 🤗❤️

RedApple profile image
RedAppleAdministrator

The problem is that the medical 'profession' do not see or even look at the system as a whole.

They see only a 'butterfly shaped gland in the neck' that produces or doesn't produce thyroid hormone.

They have no understanding of the impact that those thyroid hormones have on 'the system' as a whole.

Charlie-Farley profile image
Charlie-Farley in reply to RedApple

Yes, a very reductionist approach and totally counter to effective medical treatment. They rely far to much on the computer screen to tell them what to do next. Too busy studying that to look up and across at the patient.

1tuppence profile image
1tuppence in reply to Charlie-Farley

Were you a "fly on the wall" when I saw the Prof of Endocrinology in 2013????? he as sure as eggs are eggs didn't look at me very often.....and nor did he "see nor listen" to me on the few seconds he did.

Charlie-Farley profile image
Charlie-Farley in reply to 1tuppence

I’ve seen it so often in GPs and seen loved ones looking dreadful having taken to their bed, but apparently fine because their bloods were ok 😱🙄

It’s systemic. They are being trained to talk to the computer and treat the lab work. They don’t seem to know anything about stats, uncertainty, critical thinking etc. they are being trained to be clogs in a reductionist machine, lobotomised on graduation in many cases.

1tuppence profile image
1tuppence in reply to Charlie-Farley

So, is this due to pharmaceutical companies being behind training, as I've heard? or is it fear from the Dr that they may get it wrong if they think for themselves?? and how can we work towards getting things right again? ie, the patient being listened to? Brain fog hits, and patients are not able to think clearly at possibly one of the worst stages of their lives, when they need clear thinking help and advice, not computer/blood test directed help.

Charlie-Farley profile image
Charlie-Farley in reply to 1tuppence

I think ultimately we are heading for advocacy. My hubby had to advocate for me when I was at my worst . My brain was mush I couldn’t even process making a cup of tea (20 minutes fiasco generally). Thankfully him being a man and quite withering in his manner secured my dose being upped from 25 µg to 50 µg of levothyroxine.

I’d been put on 25 µg six months earlier! And left on it in the September because I was “in range”. I’ve just met a man who has been diagnosed as hypothyroid, but is on 25 µg of levo four years later! I’ve told him it’s all wrong and I’ve printed out the NHS and NICE guidelines (annotated).

RedApple profile image
RedAppleAdministrator in reply to Charlie-Farley

Charlie-Farley 'My hubby had to advocate for me when I was at my worst '

Advocacy is very useful indeed. But needs someone that understands the issue and has the necessary gumption to speak up for you. Lots of people simply don't have that option. Lots of people don't dare to challenge a doctor on their own behalf, let alone someone else's. And it most definitely shouldn't be a 'weak female' supported by a 'strong male' situation (which it most frequently is, if only because of the brain fog aspect of thyroid issues).

Charlie-Farley profile image
Charlie-Farley in reply to RedApple

Interestingly, hubby knew ‘knack all’ at the time, but was sufficiently confident about describing my startling deterioration.

And at the time I was the stereotypical weak female- not a situation I wish to repeat! I’m normally a bit of a ⚽️ breaker! 🤣

But you are right most people, even if they know they are being mismanaged will not speak up. Then there is an even greater number who don’t even know and accept their new normal - trusting a ‘higher authority’.

1tuppence profile image
1tuppence in reply to Charlie-Farley

My heart sinks when I read stories like this Charlie.....and I see them all too often in FB groups etc. Advocacy is one way forward...and thankfully you had a husband able to fulfil this role for you. Many don't have someone who can speak up on their behalf. Many also seem unaware that help is here?

Gingernut44 profile image
Gingernut44 in reply to Charlie-Farley

They also get given a crystal ball with their certificate on graduation, together with instructions on how to be arrogant and dismissive.

Charlie-Farley profile image
Charlie-Farley in reply to Gingernut44

Yes it’s amazing how that dissolves though when you can Logically explain , using scientific first principles, that which they can’t. 😂 hoo hoo don’t like though🤣

Gingernut44 profile image
Gingernut44 in reply to Charlie-Farley

I know but then they go into defensive mode and change the subject quickly.

Charlie-Farley profile image
Charlie-Farley in reply to Gingernut44

only if you let them 😉🤣

helvella profile image
helvellaAdministrator in reply to RedApple

You'll make me scream!

They are talking about a critical endocrine gland which is fundamental to survival.

They have a target audience who quite likely don't understand anything at all about it.

And so often the very first thing they do is suggest its shape just happens to be reminiscent of a Purple Emperor, Red Admiral, Meadow Blue or Cabbage White.

Imagine how well that goes down with people who have large goitres. Or were born without a thyroid gland at all.

RedApple profile image
RedAppleAdministrator in reply to helvella

🤣 Absolutely so!

I too want to scream every time I see or hear the butterfly description! It's patronising at the very least.

It's beyond belief that we're in the 21st century and still they have no understanding of the SYSTEM WIDE effect of thyroid hormones. (Thanks Charlie-Farley, good terminology)

Got palpitations? It must be your heart.

Got depression? It must be your brain.

Got muscle problems? You need to exercise.

Got too much fat? You need to diet.

Got bowel problems? You have IBS.

and so on, and so on, and so on.

arTistapple profile image
arTistapple in reply to RedApple

Brilliant description.

jgelliss profile image
jgelliss in reply to RedApple

Oh so well said. Different problems different medications. Big Pharma would love and does love if patients would have a whole cabinet full of drugs for all sorts of ailments. They want to keep society ill. Their goal is to keep society to keep coming back for different medications. Very pathetic.

Charlie-Farley profile image
Charlie-Farley in reply to jgelliss

Public awareness is growing. We become more cynical - we have no choice. As the corruption becomes ever more endemic cannot fail to see it.

Witchinghour profile image
Witchinghour in reply to helvella

It's medical sexism. As thyroid issues effect mostly women, we must surely be pleased to know the offending body part is a pretty shape. 🙄 To be quite honest I'm surprised they don't try to tell us its pink too...

Charlie-Farley profile image
Charlie-Farley in reply to Witchinghour

you know I totally agree, perhaps we should be framing the problem as a biological sex issue. Biological males misogynistic attitudes towards a mainly female group of people actively preventing us all from accessing good health care….🤔

humanbean profile image
humanbean in reply to RedApple

I get really annoyed about being told over and over again what shape the thyroid gland is. I really don't care about that, I'm only interested in what is does, how well it does it, and how the patient with a dodgy thyroid is treated to allow them to have the most normal life possible.

I think the constant reference to the shape of the thyroid is condescending.

tattybogle profile image
tattybogle in reply to humanbean

I think the constant reference to the shape of the thyroid is condescending..... especially since for most of us they have no effin idea what shape ours really is , 'cos they never bother to do an ultrasound .. or even try to feel the damn thing.

Charlie-Farley profile image
Charlie-Farley in reply to tattybogle

humanbean , tatty

Do you think talking about the little butterfly is the medical profession flexing the entirety of their knowledge?

tattybogle profile image
tattybogle in reply to Charlie-Farley

that's a bit optimistic .... butterflies are probably a bit too complicated for them ,... they do that whole 'conversion from a caterpillar' thing ....and they come in all sorts of different colours.

Charlie-Farley profile image
Charlie-Farley in reply to tattybogle

🤣😂🤣😂🤪👍

helvella profile image
helvellaAdministrator

Much medicine appears to me to be very unscientific.

They use methods of science, equipment of science, peer reviewed papers of science, but for one reason or another, fail to treat it as science. Or fail to understand why there is a major hole in their handling of statistics. Or try to simplify something extremely complex into meaninglessness.

And many fail to appreciate Einstein did not win a Nobel Prize for special relativity, for general relativity, or anything of the sort. But the photoelectric effect.

Charlie-Farley profile image
Charlie-Farley in reply to helvella

Your absolutely on point regards their failure to understand why there is a major hole in their handling of statistics

- the “You’re Normal, Medical Theorem” being a sublime example . 😱🤣😭

I can hardly keep a straight face when I walk past a neighbour (GP) who is head of training at the surgery I attend. I bludgeoned a few of the GPs factually, for the most part with their own guidelines with a few choice references chucked in to get to therapeutic dose. I suspect I’ve been mentioned in dispatches as he tends to duck away when he sees me coming. But what a shame! I’m in rude health compared to where I would be if I had submitted to their tender care and yet he hasn’t the cahonas to enquire as to why 🤷‍♂️🤔

Relentlesssearch profile image
Relentlesssearch in reply to helvella

I guess it’s because science is pure when looked upon, but when applied it cannot be done so without the contamination of political and economic interest. Seemingly from there stems the corruption of the science…

Charlie-Farley profile image
Charlie-Farley in reply to Relentlesssearch

I think that is the irony Relentless 😱

Through the short termism and lack of understanding, they create a far more expensive problems to solve later. Hence why a lot of research is coming out of cardiology now. They at least have realised the situation in the thyroid treatment is totally in adequate.

1tuppence profile image
1tuppence

Maybe what would be helpful is a bit of "Dr Education" regarding the Father figure of Medicine, whose name is carried in the Oath all Dr's used to take ( no longer sure they do anymore). Hippocrates used to treat the whole person. On the island of Cos it is possible to visit where he treated, and taught.... there was even a "clinic" where dreams were considered. Now it's TSH that is considered!!!!

Charlie-Farley profile image
Charlie-Farley in reply to 1tuppence

Ah TSH! The false prophet!

jgelliss profile image
jgelliss in reply to 1tuppence

There is more money to be made with this kind of medical practice. Today there are different Dr's for different ailments . Right hand needs a different Dr and left hand needs a different Dr. What happened to the practice of Dr's that treated the patient as whole???

1tuppence profile image
1tuppence in reply to jgelliss

Methinks there are a lot of different factors involved in the answer to your question, jgelliss.

Training of medics.....what they study and how much time is spent on what is studied. Nutrition...very important...gets scant attention. Ditto thyroid....we all know how vital thyroid hormones are to our whole system, yet it seems medics are taught that one type of pill will suit everyone, and a pituitary hormone will tell the whole story of it's "success in doing that" or if that pill dose needs reducing. Now...who is leading this thinking? who profits?

Time. Time was that not all that long ago, we had family doctors. They had much smaller practices, generally saw their patients in a room/clinic within or beside their own home. They knew their families, sometimes for generations. They knew what was happening to their patients in many ways, not simply within their surgeries. Now there are large practices, where you may see the same Dr, or you may not. That Dr does not know you, nor your family, unless you are extremely fortunate. There are time constraints for appointments.

Listening skills. asking an open question, hearing the answer...really hearing and taking in what is said in reply, and how it is said. How the patient as a fellow human being is experiencing whatever has brought them to see the Dr.

Seeing skills. I've learned that the reason behind a Dr coming to greet you from the waiting room is to see how you move. Hmm I suspect time constraints interfere here, as often the Dr will walk in front of you, leading the way to the consulting room, without watching how you move.

It seems I could write an essay on this!...sorry it's a long answer, and there is more I could say...computer screen focus, blood test results and "normal ranges".....research...who funds that, and what lies behind what they are looking to prove?????

jgelliss profile image
jgelliss in reply to 1tuppence

I totally agree with you. We where once a family member to Dr's. Dr's new our family's. Today we are just a number on the computer screen. Maybe we ought to have a picture of ourselves on the computer screen so the Dr gets to see us .

Charlie-Farley profile image
Charlie-Farley in reply to jgelliss

I would choose this just to see if they notice 🥸 👍

Relentlesssearch profile image
Relentlesssearch

what a miserable thing to read 😫 I appreciate your wisdom very much, but as a very long term sufferer, I wish I’d not seen this

Charlie-Farley profile image
Charlie-Farley in reply to Relentlesssearch

Please do not lose heart, but do take heed Relentless. People are sometimes a little too compliant with their doctors, thinking their GP or Endo will work things out for themselves. Rare that happens. Normally the mismanagement brings about other issues which the average GP then eagerly sets about treating- NOT cognisant that it is all connected to their inability to interpret the blood results and understand how to treat hypothyroidism. tattybogle’s analogy on another string of lots of little hammers us pertinent to this issue. Its a comment on another string. Bear with me I’ll tag you in 😊👍

Relentlesssearch profile image
Relentlesssearch in reply to Charlie-Farley

happy to have my little hammer 🔨

Charlie-Farley profile image
Charlie-Farley in reply to Relentlesssearch

Yay! Relentless , tattybogle , me too and I’m thinking of upgrading to an FBH - F Big Hammer!🤣👍

Relentlesssearch profile image
Relentlesssearch in reply to Charlie-Farley

😂

tattybogle profile image
tattybogle in reply to Relentlesssearch

tap ... tap ..... tap ....Tap ........TAP

pink floyd.... marching hammers :)
Charlie-Farley profile image
Charlie-Farley in reply to tattybogle

we don’t need no thought control- no dark sarcasm in the consultation room, GPs leave us hypos alone!

In truth - the less I see the healthier I am!

tattybogle profile image
tattybogle in reply to Charlie-Farley

:) :) :)

1tuppence profile image
1tuppence in reply to tattybogle

Water torture :-) Drip Drip Drip, Tappity Tap Tap

1tuppence profile image
1tuppence

How is it, do you think, that those of us fortunate to find this forum and ThyroidUK, know these things and yet it seems very few medics do? and to the point.....how can they be better informed?

Charlie-Farley profile image
Charlie-Farley in reply to 1tuppence

I am absolutely racking my brains to think of an inroad - trouble is they close ranks even if they know what they are doing us wrong. Hard one! Lots of little hammers!!! As tatty says and perhaps the odd big one.

1tuppence profile image
1tuppence in reply to Charlie-Farley

Sometimes tempted by the BIG one :-)

Regenallotment profile image
Regenallotment

next week I have two hospital referrals, for two different organs (neither working quite right and both with worrying ? Somfar with equal scans and blood tests) , with two different hospital departments. I will conduct a comparison in terms of language, professionalism, patient perception of experience and expertise. Although my bias is already in play as ENT seem to be ear experts…. 🔨🔨🔨🔨 I expect gynaecology will be evidence based treatment and guidance as opposed to backward tropes.

Charlie-Farley profile image
Charlie-Farley in reply to Regenallotment

😬🤞

Tythrop profile image
Tythrop

Yep,but we arr not loved to criticise doctors

Topsy33 profile image
Topsy33

I blame the relentless reliance on the Evidence Based Medicine approach used. It is devoid of Humanity and it’s only plus point seems to be that it lends itself to computer modelling and algorithms. So tick box diagnosis. It really is The Ladybird Book of Medicine writ large!

It is lazy medicine and driven by the programming approach not the needs of patients.

Worse still, it has thoroughly de-skilled the entire medical profession and they don’t seem to have noticed!

arTistapple profile image
arTistapple in reply to Topsy33

You are spot on.

Charlie-Farley profile image
Charlie-Farley in reply to Topsy33

Don’t you thinkTopsy, it’s rather ironic to call it evidence based when the best evidence that is in front of them - the patient with symptoms is completely ignored? And yes, it is deskilling. I have had to explain my results and how to interpret them to 5 different GPs. That is shocking isn’t it?

Because everything I said was grounded in solid science and statistical interpretation they did not push back on me. They did recognise, at least, that I probably had a much better handle on things than they did although one did push back a little bit at the start of the conversation and had to be educated a little more! Terrible level of ignorance, quite shocking when you think they’re dealing with peoples lives.

Charlie-Farley profile image
Charlie-Farley

As far as I’m aware, sadly, they (Endocrinology and GPs) still haven’t worked it out .😱 They are sitting in a corner with their hands over their ears rocking gently and refusing to engage.

Little hammers - keep tapping!

jgelliss profile image
jgelliss

Spot On . On all counts.

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