Ping-pong analogy : I’m sharing my observations... - Thyroid UK

Thyroid UK

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Ping-pong analogy

Charlie-Farley profile image

I’m sharing my observations of how GPs and Endos treat patients based on my own experience, the experience of loved ones and having read the experience of others.

How do most GPs and a good few consultants interpret blood tests? They generally don’t. They read off the lab sheets. The labs push through hundreds, if not thousands of samples in a week and the results are printed out on a general information sheet. There is nothing bespoke about it at all. When my lab results have been in range, I have never been asked how I actually feel - I’ve just been told the results are ‘normal’. The range will mean different things to different people - we do not all respond to these tests in the same way.

The trouble is the majority of GPs (and some Endos) don’t understand what the range is there for - it’s a guide only! Sadly most think the range is a ‘cup’ and that the patient is a ‘ping-pong ball’ and if they get the ‘ping-pong ball’ in the cup they win a prize.

***The dangerous application of the ping-pong principal.

I had a GP tell me I was ‘normal’ on 75ug of Levothyroxine (even though I had overt hypothyroid symptoms ) even though she had never set eyes on me before. She couldn’t get her head round the fact I was ‘in range’ and still had symptoms.

I have a buddy down south who is on 75ug and doing really well she is 4’11”” and 6 1/2 stone 🧚‍♀️

I also know another lovely lady who is slightly framed (about the same as my buddy down south) who is on 100ug of Levothyroxine (bit higher).

I’m 5’8” and 15 stone 🐘 (and now on 150ug) 😂🤣😱

We are all different and there will even be differences in levels of medication with people of the same build. We know this, but this seems to fly over the heads of a fair few in the medical profession.

Many Doctors simply do not understand that you can be on completely different doses at either end of the range and be hypo (at the lower end) and be optimal and well (at the upper end) OR, heaven forbid, because of other confounding factors you may sit outside the top of the range before you feel well OR (panic stations) the range might not apply at all! 😱😂

It is also important to distinguish between ‘normal’ and optimal. The term ‘normal’ (note my use of the inverted commas) it is a misused term that you should be wary of. What should be aimed for is OPTIMAL.

Only two little words, but they mean very different things. In fact one could say ‘normal’ is meaningless. GPs who don’t know what they are doing generally tell you that you are ‘normal’ if you are in range.

Symptoms should be the most important diagnostic tool, but it sits at the bottom of the list as an annoyance. Nothing annoys a doctor more than having a lovely set of blood results, all ‘normal’ and the damned patient goes and spoils it all by having symptoms! 😂

Ever been told by a GP “Your symptoms should have cleared up by now” or something similar and made to feel the failure for not having responded to their rubbish treatment??

Vitamins need to be higher than just in the bottom of the range loads of info on this. GPs in the main have no idea on this either - refer back to cup/ping-ping ball scenario.

**Feeling well or good on paper?

The consideration of weighing up what you want. Do you want your bloods to be measured against a range that may (or may not) not bring you to good health, but looks good on paper, or do you actually want to feel well? The many Endos and most GPs will want it to look good on paper. ……….irrespective of how you feel.

Put your wellness first and make them do the same.

57 Replies

Hi Charlie-Farley,

I'm quite new to all things hypothyroid but it's been a sharp learning curve reading through this forum.

I've been told by two different gps that my FT4 is only a little bit below the range with the implication that it doesn't matter and see you in a year's time despite being symptomatic for a number of years

Also only last week I asked if I could have certain blood tests done due to first endo appointment immenent; the gp said that antibodies don't fluctuate and so as they were negative I don't need to repeat them.

I feel despair but angry at the same time though saving what energy I do have to help myself so have got private tests ready to be done.

Best wishes.

Yes sadly going private for comprehensive evaluation seems the only way. Gauge your results against how you feel to make any results meaningful. 😊👍

Hello hedgeree. I am proof that antibodies fluctuate. In 2017 my thyroglobulin antibodies were less than 10. Now in 2022 they are over 400 and well out of range.

SlowDragon profile image
SlowDragonAdministrator

As we see many, many times on here ….many thyroid patients when they have optimal Ft4 and Ft3 for them as an individual …..TSH is often very low or suppressed…..and GP’s then panic and want to reduce dose

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease,

Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

SeasideSusie profile image
SeasideSusieAdministrator in reply to SlowDragon

Thanks for that SD, I've saved for future use 😊

SlowDragon profile image
SlowDragonAdministrator in reply to SeasideSusie

tattybogle posted this last week

I saved it as thought it was very useful quote

helvella gave it to me a while ago when i told him my doctor had shut me up with "I'm not going to argue with you about it , I have to go by NHS guidelines "

Unbelievable 🙄

I think he was a bit flustered, it was on the telephone so i had a sofa full of scientific evidence .... (and i hadn't been a good compliant patient and died, like he told me i would at our previous encounter ) poor chap :)

I think for once he was conscious.

Conscious of the fact that he didn’t know everything and you knew a hell of a lot more even by virtue of the fact you could put your hands on the right information.

Don’t let him off! LOL! You’re just too kind🤣👍

humanbean profile image
humanbean in reply to tattybogle

Sadly there is only one, rather useless and totally inadequate, mention of secondary hypothyroidism in that NICE document. :(

I’ve built up a dossier containing results references guidance et cetera. I chuck bits at them, as and when required, it’s the only way I have found that works.

It’s literally the case we have to look after our own health now. You can pretty much guarantee, if you leave it in the hands of overworked undertrained GPs and even endocrinologists who are mostly diabetes specialist anyway you are going to be left up the creek without a paddle and ill.

Me too!

Delgor profile image
Delgor in reply to SlowDragon

I would like to second SS's comments - I too have saved for future use

😀

Brilliant quote SlowDragon

I’m saving that! It acknowledges that they do not have all the knowledge and there is still something to learn.

If they cared to look, medics need search no further than this amazing forum to discover the truth about the miserable outcomes meted out by incompetent practitioners.

The problem starts at the top and filters down through poor thyroid education in med schools reaching down to consequent fear of losing their registration if they breach guidelines....guidelines are not rules but that doesn't seem to compute either.

I was told by an endo who insisted I did not need T3, and that taking it was like getting into a car and setting off on a journey....sometimes you arrived safely, but you could have a fatal crash.

I don't know what age he thought I was.....five maybe!!

He clearly anticipated the latter outcome.

T3 almost certainly saved my life!!

It's fair to expect...

How do you feel?....a simple, polite query.

Followed by clinical evaluation

Testing

Competence in analysing labs

Understanding the pituitary hormone TSH

Understanding replacement hormones

Understanding thyroid functions .....etc etc

Not a quick glance at a computer screen followed by an uninformed comment before dismissal

There are clearly good medics but this forum shows that their are far too many of the other ilk.

Sadly we often have to learn how to advocate for ourselves.....and when life is knocking the stuffing out of you that is grim.

Many have campaigned for change but success is still over the horizon!

I agree Charlie-Farley, "Put your wellness first and make them do the same."

Absolutely- trouble is once you’ve cross the bridge and become your own health advocate you never trust them again entirely.

They have to earn trust, it doesn't come with the job....some of them don't understand that.I trust a lot of medics but thyroid disease is medicine's Achilles Heel.

I like the analogy with shoes. I believe the average UK ladies' shoe size is between 4 and 6. I generally take a 4. One friend takes a 6. Another - although my height - has HUGE feet and takes a 7 or sometimes an 8. Unsurprisingly we don't share shoes - even though my first friend and I are "in range"; and forcing my other friend into "average" shoes would do her no good at all.

And people in shoe shops don't just go round the back and pull out 2 shoes, hoping there's a left and a right, and that both are the same size and the right size .... so why do medics do the equivalent? x

Love that analogy!

Brilliant f-p...and, to complicate things further, some people's feet are different sizes!Rare, but it happens.

Could that be used for the DIO gene issue heterogeneous and homogeneous? 🤣👍

I was thinking more of forms of Thyroid Hormone ResistanceThe Dio2 variant could maybe be very narrow feet..."normal" fittings won't do!

Slippers? Doc Martens?

Docs reserved to really get the the misery of thyroid disease across ....and slippers for correct dose, recovery and job done!I think I've flip- flopped!

tattybogle profile image
tattybogle in reply to DippyDame

I've never thought about the 'normal' /shoe size analogy any further than

"sizes 4-7 are all 'normal' ,but wearing size 5 or 7 will give you significant problems if you are a 6"

But now i think on it , you're right , there is so much more going on than just 'size'

So it's an even better analogy for how specific our needs are for a thyroid treatment regime that actually works for us.

E.g.

The 2nd toe on my right foot is slightly longer than the big toe is .

..... but on my left foot it's slightly shorter ..... this has implications in choice of shoe style.

I don't like heels , they look good ..... but i can't run away from policemen in them.

And anyway .. i much prefer bare feet .... unless it's too cold , or some idiot broke a glass ...... i've always hated shoes , you can't feel what's going on and they're rubbish for balancing on rocks.

So my optimal 'footwear solutions' would be a major inconvenience for someone else ... even if we WERE both measured as Size 6 in the shop.

DippyDame profile image
DippyDame in reply to tattybogle

I think my feet have grown / spread during covid because I spend much of my days indoors in bare feet....well socks for cold winter days.

I prefer boots to shoes

So yes....@fuchsia-pink has the perfect analogy!!

Edit....grrrr! The tag link isn't working

tattybogle profile image
tattybogle in reply to DippyDame

probably because you've joined your @ to your ..... 's

DippyDame profile image
DippyDame in reply to tattybogle

How stupid can I get....didn't notice!!Thank you

humanbean profile image
humanbean in reply to DippyDame

Mine are about half a size different from each other. It doesn't sound much and nobody would guess from seeing my feet, but for some designs of footwear it can be a painful difference. I always fit to the largest foot.

As Kennith Williams famously said:

"It's frightening to think with modern medicine and all the techniques available to them... they can't really help you.. In the old days, you know, you were better off because nowadays, they are all specialists. Everyone's becoming better and better at less and less.... Eventually someone's going to be superb.... at nothing."

LOL!

I’m saving that one as well!!!

Brilliant

Brilliant and so true!

Oh yes

I would definitely concur.

DippyDame profile image
DippyDame in reply to greygoose

Spot on...

I think we've arrived at " eventually"!!

greygoose profile image
greygoose in reply to DippyDame

I fear so.

My gp does exactly that even though I have said I'm not feeling right I have just seen an endo this morning and he said what you are saying and you have to find the right range for you just because you are in range doesn't mean you are ok

So one who understands?! (Endo that is)

Let Dionne know he might just be a keeper if he cares enough to consider your symptoms 😊👍

Agree....my GP backed down when she realised I knew more than her!Uncomfortable, but my health was at stake not her feelings.

I’m of the same mind. The stakes are far higher for us….

Some useful chat on this thread and that NICE quote is very good.

Now if only we can find something that we can show doctors when they claim TSH is the be all and end all, that there’s no value in checking FT3 and FT4 levels. I’ve had this in writing from my mum’s NHS Endo despite him prescribing her Liothyronin and Levo combo! He doesn’t want to check blood levels of the hormones he’s giving her, what an absolute &@£?.

DippyDame profile image
DippyDame in reply to Wired123

Any help?

bmcendocrdisord.biomedcentr...

"Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann "

thyroidpatients.ca/2021/07/...

Superb!

You might already know this, but I'm sure some members won't. John E. M. Midgley, the first named author in that paper, is diogenes , who posts useful research papers on the forum.

Yes and I think they are brave to step away from the herd. Inspiring even, when you consider the persecution others who didn’t follow the party line have suffered, in spite of the overwhelming evidence of the good they did. 😔

Still that evidence was human testimonial not laboratory blood-work, so it doesn’t count does it? Not with the current establishment - disgusting.

Absolute 🤡

Beggars belief 😔

I am sure we can all relate to this.🌸🌸

I was just reading this thread and wondered if we can simply not consent to a tsh, only t3/t4. If they are in range I’m fine as my tsh always starts an argument and I’m tired of it after 5yrs post TT. May suggest it when they start twittering in about a month. Xx

Hi Hay2016

I think many of us recognise the TSH is a incredibly unreliable, poorly calibrated secondary measurement. It relies entirely on the pituitary being in sync with the thyroid which is a rather optimistic assumption when you have Hypothyroidism. Why they have so much difficulty in understanding direct measurement of the hormones involved is a far better approach baffles me.

I know my TSH is below range and I will be having to have another debate with which ever GP I end up talking to next time. I’m feeling well so I’m in no hurry to catch up with any of them particularly they’ve all disappointed.

DippyDame profile image
DippyDame in reply to Hay2016

Chance would be a fine thing!They ( wrongly) claim TSH to be the gold standard test and treat FT3 tests as if they were too hot to handle!

"In range" isn't good enough, the result needs to sit in the range where you feel best and is optimal for you

See fuchsia-pinks shoe analogy above.

Try giving them the info in those links

The first author in the top link is TUK's diogenes and along with the others are highly respected in the field....they may have a problem arguing against their research!!

humanbean profile image
humanbean in reply to DippyDame

Chance would be a fine thing!They ( wrongly) claim TSH to be the gold standard test and treat FT3 tests as if they were too hot to handle!

The really stupid thing about dismissing Free T3 in favour of TSH is that doctors often claim that Free T3 is too variable to be useful. It is actually less variable than TSH.

This issue of variability is discussed in the following links :

academic.oup.com/jcem/artic...

thyroidpatients.ca/2020/07/...

tattybogle profile image
tattybogle in reply to humanbean

Agreed , it's a ridiculous cop out to say 'fT3 is too variable' .... if not taking extra T3 then it's probably the most stable of all of them ..... maintaining T3 stability is clearly the whole point of the HPT axis, as far as i can see. And if someone IS taking extra T3, then just take time of last dose into account when interpreting result according to what you want to check .... highest point / lowest point / mid point ... it's not rocket science.

And why we should have to listen to this guff from people who don't even seem to realise that their prized TSH had a bloody circadian rhythm i really don't know.

fT4 is put out in a pulsatile fashion , and is equally affected by time of last dose ., so if they want to write something off for being 'too variable' they should also chuck out fT4 and TSH testing ... bunch of disingenuous muppets .

Brilliant - you really make me smile - I can just imagine the GP (The one who hides behind his car when he sees me even though he’s not my GP!) Spluttering as he realises he’s not got a cat in hells chance of”out knowledging” you on the thyroid 🤣👍

Am waiting for him to resort to "because i said so" or

"if you don't do as you're told , you're not going to the party"

Just make sure you’ve got a tape recorder going so you can play it back and we can all have a laugh. I was told once that the more you learn the more you realise how little you know.

So with regards to some of the medical profession how does that work then? When they act as if they know everything we can pretty well assume they know absolutely nothing.

Conversely when people admit the limitations of their knowledge that there might be more to know, you generally know they know something..

DippyDame profile image
DippyDame in reply to humanbean

Great links thank you

Hay2016 ...more TSH info from humanbean

Thanks for sharing 😊👍

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