You might (like?) this?: This downloadable paper... - Thyroid UK

Thyroid UK

127,380 members149,598 posts

You might (like?) this?

diogenes profile image
105 Replies

This downloadable paper gets twisted up in logical knots as it tries to explain why patients "overtreated" with T4 or combination feel better. Of course, "over treatment" is defined as suppressing TSH. I sometimes wonder why I bother if medics aren't paying the slightest attention to work outside their experience and mental capability. The latter I think bears the clue. The story of placebo effects are trotted out in a vain attempt to rationalise an unrationisable situation. NB half the authors are from Newcastle where dwells the fearsome Pearce.

Enhanced Well-Being Associated with Thyrotoxicosis: A Neglected Effect of Thyroid Hormones?

May 2022

International Journal of Endocrinology and Metabolism 20(2)DOI: 10.5812/ijem-127230

Petros Perros, Laszlo Hegedüs

pubmed.ncbi.nlm.nih.gov/359...

[edited by admin to include PubMed link]

105 Replies
Divine1990 profile image
Divine1990

🤬 Guess what part of the country I live in?

arTistapple profile image
arTistapple in reply to Divine1990

Divine do you think your 4 likes are all from our part of the world?

Divine1990 profile image
Divine1990 in reply to arTistapple

arTistapple I think you may well be right sadly.

jimh111 profile image
jimh111

I do wonder how they diagnose hyperthyroidism. Do patients turn up and say to the GP "Doctor I feel fine. Do I have Graves'?"?

PS. Any grammer experts out there? Have I got the punctuation right?

helvella profile image
helvellaAdministrator in reply to jimh111

Named after Robert James Graves so, yes, the apostrophe must go after the "s".

You could save yourself the angst and call it Parry disease, Begbie disease, Flajan disease, Flajani–Basedow syndrome, or Marsh disease. :-)

greygoose profile image
greygoose in reply to helvella

Thank you for clarifying the apostrophe. I didn't know he was Mr Graves, I thought he was Mr Grave. But, these days, not many people bother with the apostrophe, anyway! But, I do like to be correct. :)

TSH110 profile image
TSH110 in reply to greygoose

Did you know Ho’vis was short for Homonis vis - the power of man

greygoose profile image
greygoose in reply to TSH110

No, I didn't. What's the connection?

helvella profile image
helvellaAdministrator in reply to greygoose

The apostrophe and where it should be placed. :-)

greygoose profile image
greygoose in reply to helvella

Well, to be brutally honest, I've never come across the term Ho'vis - unless you're talking about Hovis the bread. But, I've never see an apostrophe used in that name.

helvella profile image
helvellaAdministrator in reply to greygoose

Well off topic!

In 1915, when the London and South Western Railway inaugurated their first electric train services, they introduced alphabetical head-codes in lieu of the traditional discs used on steam locomotives so that the general public could more easily identify their train. A 1926 advertisement widely deployed on the railways showed five such trains carrying headcodes H ō V I S along with an explanation (H-Hampton Court, ō-Hounslow, V-Kingston [V for Thames Valley], I-Dorking North & Effingham, and S-Shepperton). The fact that the "clockwise" Hounslow Loop head-code was a slightly height-reduced 'O' topped by a bar led to the rendering of the brand as HōVIS – a rendering that significantly outlasted the advertising campaign.

Many images of Hovis (as in wrappers and adverts) show a small 'o' (with or without a macron) and something such as a bicycle or trade mark claim which is where an apostrophe would be if placed after that 'o' - and looks in outline or half-closed eyes like an apostrophe.

greygoose profile image
greygoose in reply to helvella

As you say, well off topic!

Fruitandnutcase profile image
Fruitandnutcase in reply to helvella

I’ve suspected it for a while but this confirms you truly are the fount of all knowledge. 😊

TSH110 profile image
TSH110 in reply to helvella

fascinating 👍🏽😁👍🏽

TSH110 profile image
TSH110 in reply to greygoose

oh the old ads when I was a kid had the apostrophe and I always wondered why it was there till I found out from visiting the place he milled grain in Staffordshire and the guide told us. I thought you’d remember it that weird apostrophe

greygoose profile image
greygoose in reply to TSH110

No, I really don't remember it. And I worked for them! lol I worked in the Vauxhall Bridge mill, London.

TSH110 profile image
TSH110 in reply to greygoose

gosh what a strange coincidence!

TSH110 profile image
TSH110 in reply to greygoose

the apostrophe

Titaniumfox profile image
Titaniumfox in reply to helvella

"Begbie disease"

Now I'm thinking of Trainspotting! 😂

Lulu2red profile image
Lulu2red in reply to jimh111

There are so many people walking around with hyperthyroidism who never present to a doctor and even if it's picked up by other means if the patient claims no issue they leave it alone. Even patients with nodules who are monitored by Endocrinology are often not treated even though their thyroid hormones are out of range. Over the past 25 years I have had GP/Endocrinologists fiddle with dosages because of an ineffective blood test where the goal posts move. Never once do they listen to symptoms or if they do they diagnose you with something you don't have. So now I don't bother with them. But when my annual blood test comes around I have to fight my corner and listen to complete drivel in order to keep my T3 prescription. It's so one sided. They just cannot accept that everyone has a unique thyroid footprint. The crime here is that they are keeping people sick and they know it. Maybe I am over reacting but my current Endocrinologist wrote to my GP stating my levels are in range but the patient still claims to be unwell. The only person in the equation who is making it up as they go along is the Endocrinologist.

jimh111 profile image
jimh111 in reply to Lulu2red

The endocrine community fail to recognise there are more forms of hypothyroidism than just primary or central hypothyroidism. The thyroid hormone system is incredibly complex with opportunities for failure at multiple points.

humanbean profile image
humanbean in reply to jimh111

I'm surprised you mention central hypothyroidism in that context. Getting a diagnosis for that is horrendously difficult because TSH can be within normal range even with extremely low in range or below range Free T4 and Free T3.

jimh111 profile image
jimh111 in reply to humanbean

Yes, they recognise primary hypothyroidism with a high TSH and secondary with a low TSH but don't recognise what I think is a relatively large group of people with low normal fT3 and fT4 and without an elevated TSH. I call this 'subnormal TSH secretion' (because noone else have given it a name). I've seen around a hundred such cases on the forums and they all have relatively severe symptoms. I posted about it a few years ago healthunlocked.com/thyroidu... .

There are other causes of hypothyroidism such as endocrine disruption and no doubt others that remain to be discovered.

TSH110 profile image
TSH110 in reply to jimh111

not in my case…for decades (primary hypothyroidism) but to be fair they didn’t even get as far as doing a blood test it was full on gaslighting

1tuppence profile image
1tuppence in reply to jimh111

Well Jim, I reckon I'm one of "the many forms of hypothyroidism". Since my fall backwards suddenly from standing upright, hitting the whole back of my body, jerking my neck and giving me a great bump on my head, my thyroid has been jiggered. I've had severe fluid retention, very painful joints etc. My GP is alarmed with my T4 result. He is ignoring the fact that my unintentional over-medicated 10 days has given me the best T3 result I have ever had, and that I had absolutely no symptoms of being over-medicated..In fact on speaking to the physio who visited me this past Tuesday to talk about my fall, I realised just how many of my symptoms had improved dramatically. Last night I had excrutiating cramps again in my feet, disturbing my sleep and meaning I had to get out of bed in the middle of the night...and I haven't reduced my proper prescription as yet. He has reacted by cutting my prescription. I am alarmed...but do I count in this? It seems not. I know from past experience that the dose he is prescribing makes me feel wretched. My T3 result from the same blood test as the T4 seems to me to be screaming that I need T3.

healthkiwi profile image
healthkiwi in reply to 1tuppence

Like many on this site have found, sooner or later you may have to take matters into your own hands. (Probably sourcing and supplementing with T3 or an NDT). Sticking with a doctor's regime when it's not working for you may make you a good (compliant) patient, but it won't make you feel well. Once you're well using all the great info here, you can use your improved health and knowledge as an education for your doctors. Or just enjoy your life again.....

TSH110 profile image
TSH110 in reply to healthkiwi

scandalous but true

1tuppence profile image
1tuppence in reply to healthkiwi

Thank you healthkiwi. I have decided to trial T3. I can't simply allow myself to feel as ill as I did on this lower dose as when I agreed to drop it in 2017. Frankly I'm at an age where if my life is miserable through not receiving what my body needs, I'm willing to take the risk of trying to sort it myself rather than wait any longer for help which seems not to be forthcoming.

jimh111 profile image
jimh111 in reply to 1tuppence

Any sudden inertial jolt to the head such as an impact or deceleration from a whiplash type accident can damage the pituitary. This can take some time to show up, months or a year or two. If you see my reply to ‘humanbean’ just above, it has a link to a post I made and this post has a link to my website that describes the effects of an under-performing pituitary.

You would need to see where your TSH is when ideally you were on levo only and your fT4 was around mid-interval. If your TSH was low then it would suggest you should have your pituitary checked.

1tuppence profile image
1tuppence in reply to jimh111

Thank you jimh111. I will go and have a look, as you suggest. I can't imagine dealing with a pituitary issue......

I do have results from T4 only...all of my results are T4 only.

1tuppence profile image
1tuppence in reply to jimh111

Very interesting jimh111. In 1991 I had whiplash. Over the following years I developed a pain in my head which no neurologist I've seen has been able to relieve. My hormones went haywire. I think I'm actually in the "endocrine disruption" hypothyroid class...long history of strong reactions to hormones in HRT, pre-eclampsia in both pregnancies, whiplash and now a backwards fall.

nightingale-56 profile image
nightingale-56 in reply to jimh111

jimh111 I first went to a new GP with what turned out to be Pompholyx, but when I also told him I had lost 1 stone in the past three weeks, he said "I think I will do some blood tests". A lovely GP, who had got it the first time I consulted him. He told me that I had Graves!

jimh111 profile image
jimh111 in reply to nightingale-56

Your post isn't quite clear. I assume you mean he told you it was Graves' and he was correct.

nightingale-56 profile image
nightingale-56 in reply to jimh111

Unfortunately, he was correct! From then on it just went downhill. I have put up my biopic, but really does need updating a bit when I get round to it.

1tuppence profile image
1tuppence

Do they bother to explain how physical symptoms can be eased if not removed on a higher toxicity...or is it another "All in the Mind" study? Sorry to be cynical....cynicism based on experience.

LindaC profile image
LindaC

Thank you, diogenes and 🦕😅

SilverAvocado profile image
SilverAvocado

It's so so strange. The idea these treatments are to relieve symptoms and improve the patients' health and ability to live their lives is so far from their minds.

This reminds me of the general principle in medicine that different symptoms and health difficulties are only considered serious if they are flagged up as serious somewhere in that particular clinician's guidelines or training. This usually has no relationship to how bad the symptoms are either in terms of the impact on the patient's quality of life, or on long term health risks/ dangers that result.

Thyroid symptoms just happen to be flagged as very trivial by doctors. And similarly the symptoms of under medication are seen as trivial, but the symptoms of over medication are seen as important and risky.

TSH110 profile image
TSH110 in reply to SilverAvocado

just shows how stupid they are to ever think a thyroid disorder is trivial it indicates zero comprehension of what the thyroid actually does. Which is an awful lot…

humanbean profile image
humanbean in reply to SilverAvocado

Another related problem is that, suppose patient X has Free T4 and Free T3 results which are 10% through the range, and TSH is in range. Patient X's set point for having their best health may be at 60% through the range. In reality, in the UK they will never get treatment unless they treat themselves.

Now, suppose the low levels of Free T4 and Free T3 occur from patient X's birth. How much damage will be done to patient X while their levels are so low? If they get treated aged 5 (unlikely, but this is just a thought exercise), they may recover to their best health. But many of us have to wait decades - how much damage is done to the heart and the brain, and other organs? And even then, any treatment is marred by parsimonious doctors, who keep levels low on purpose, and/or cut dose by 50% or more if the TSH goes below range or even just lower in range than before.

We're basically doomed by flow charts and guidelines I think.

PixieElv profile image
PixieElv

thank you for sharing.

What I don’t understand is, why our GPs think they know more than our Endos. My Endo is amazing (yes, lucky, lucky me) but my GP questions his advice EVERY time. ‘Oh, your TSH is suppressed. I must lower your dosis’. No you don’t, read the referral letter… 😩

arTistapple profile image
arTistapple in reply to PixieElv

Crikey. Very Very lucky you!

TSH110 profile image
TSH110 in reply to arTistapple

I thought everyone knew more than most endos 🤣🤣🤣

PixieElv profile image
PixieElv in reply to TSH110

😂 we probably do

PixieElv profile image
PixieElv in reply to arTistapple

I am paying for him. The NHS wasn’t interested in diagnosing me (there’s nothing wrong with you, give her antidepressants, HRT, its in your head…). Anything but thyroid, but luckily the kind folk on here helped me to diagnose myself and he confirmed it 😊

waveylines profile image
waveylines in reply to PixieElv

Alleluya! A gem in a dessert!

TSH110 profile image
TSH110 in reply to PixieElv

my story exactly bar the diagnosis I came here some time after that and I thank the day I did - lifesaver!

Tythrop profile image
Tythrop

Some people sign up to medjcal careers for the status, so anything or anyone challenging their opinions challenges theur sratus ,its an "upstaurs downstairs " thing ,they see themsekves as "upstairs" and patients as "downsrairs" It would be nice if they could be like Diogenese and view the doctor patient relationship as collaberative rather than as Master and Servant, Our late Queen got it right, she saw her life was one of service, maybe the med profession could kearn a thing or two from her.

waveylines profile image
waveylines in reply to Tythrop

its also lazy doctoring.....the screen reveals all but if u dont fit one of those pathway criteria theres nothing wrong! Complete bull!

humanbean profile image
humanbean in reply to Tythrop

Just think of the average doctor. Then remember that 50% of them are always below average.

And always remember that, in any class of students, in the group of students who pass exams, one of them came last - and one day that person may be appearing in a surgery or hospital room that you appear in.

TSH110 profile image
TSH110 in reply to humanbean

probably the same for every profession

humanbean profile image
humanbean

From the Context section of the paper:

Anecdotally some patients describe the effects of L-T3-containing treatments as “miraculous” (3). This phenomenon may be due to a placebo effect, patient perceptions that relate to the medical consultation experience, the differential effects of exogenous L-T4 on type 2 iodothyronine deiodinase (DIO2) ubiquitination between peripheral and hypothalamic-pituitary tissues (4), or genetic susceptibility to impaired efficacy of L-T4 in some hypothyroid patients,1 leading to hypothyroidism at tissue level (“low tissue T3 hypothesis”) (1).

Naturally, the authors can't even imagine that their theories about thyroid hormones aren't 100% accurate.

And mentioning this as a possible cause for patients finding T3 helpful:

patient perceptions that relate to the medical consultation experience,

ought to be a joke, but sadly it wasn't intended to be. Most people who are hypothyroid are female, and many doctors have appalling attitudes towards women, thinking that we are all hypochondriacs and drug-seekers.

It always astonishes me that doctors with these opinions on thyroid hormone treatment never stop to consider that they have T3 flowing through their veins.

...

Changing the subject slightly, but this issue of TSH as the sole explanation for everything thyroid related and T3 as the bogeyman, makes me think of that old Greek doctor, Galen:

en.wikipedia.org/wiki/Galen

He was the doctor from the 2nd / 3rd century who decided that humans (and animals?) were made of blood, phlegm, black bile and yellow bile. And doctors loved this, and stuck to this theory for over 1300 years (!!!) :

Galen's understanding of anatomy and medicine was principally influenced by the then-current theory of the four humors: black bile, yellow bile, blood, and phlegm, as first advanced by the author of On the Nature of Man in the Hippocratic corpus.[11] Galen's views dominated and influenced Western medical science for more than 1,300 years.

The fact that medicine can adhere to TSH theories for everything thyroid-related for over 50 years despite the fact that it leaves a large number of patients very unwell is worrying evidence that doctors still don't like to change their minds when not doing so makes their jobs easier.

arTistapple profile image
arTistapple

I want to kiss you Diogenes.

diogenes profile image
diogenes in reply to arTistapple

I wouldn't advise it! You don't know where I've been.

arTistapple profile image
arTistapple in reply to diogenes

It might just be your mind I am after. X

birkie profile image
birkie

hi diogenes ❤️

I was under (a doctor) at Newcastle for parathyroid, wouldn't recommend him at all... The tests he performed in Aug 2020 were supposed to have been.. PTH.. Calcium, vitamin D... They did.. PTH.. Calcium no vit D.. Then he requested the test again in the sep 2020, they did.. Calcium, vit D no PTH🤦‍♀️ he never question the fact the bloods were being done incorrectly ( to diagnose primary hyperparathiyroidism you must do PTH, calcium, vitamin D in the same draw) he then discharged me from his clinic without checking if I indeed did have primary hyperparathiyroidism 😠 so if he can do that with parathyroid problems I'm sure he can do the same with thyroid, in medication ect, the endo who passed me on to him told me he was one of the best endocrinologists in the country 🤦‍♀️😆😆😆

helvella profile image
helvellaAdministrator in reply to birkie

Edited to redact the specific doctor name in line with forum guidelines.

LindaC profile image
LindaC in reply to helvella

Not his actual name... I use PPP to describe - anyone knowing their stuff will get the meaning of PPP! ;-)

birkie profile image
birkie in reply to helvella

hi helvella ❤️

Sorry for my brain fog on mentioning a specialist 🤦‍♀️🤦‍♀️ we are allowed to put our feeling forward on the parathyroid site in relation to specialists, if they are good ones or bad ones.. Probably fgot which site I was on.. 😂 But the post was very interesting helvella 👍

LindaC profile image
LindaC in reply to birkie

Who had the audacity to say that... eek!? It must, by, now, be time for doctors to be 'held to account' and 'brought to book' for their adoption of 'little pet-theories' used for reasons other than the treatment of ill people. The knock-on of un/poorly treated thyroids can, as many of us know, be horrific! Those perpetuating this Medical Misogyny [largely women patients] simply don't give a damn and then patient blame' as their cover-all cover-up.

Where there still appears little to be done re CFS/ME, other than following those hounded as were Dr S and Dr P, hypothyroidism must surely stand out way on its own in this regard? One more time: this will surely go down as one of the biggest medical scandals of 'modern' ;-) times.

birkie profile image
birkie in reply to LindaC

hi LindaC❤️

I was under this endo at Newcastle for parathyroid problems, but had my thyroid removed due to graves thyrotoxicosis in 2019 after going bk and fourth to my gp for over a year he kept insisting my symptoms were menupausal 🤦‍♀️i was eventually rushed to hospital in January 2019 in thyroid storm obviously lost it as it was so thyrotoxic I nearly went into a coma😔 the doctor in charge on my ward was discussed I'd been trying to get diagnosed for over a year, discussed I'd not seen an endo, or were offered an uptake scan, but like all these so called professional no one was ever brought to account for the miss diagnoses 😤 I'm now trying to do it with the help of my son.. Who got my medical records and found in 2014 an endo had some bloods done from me and said I had a short suppressed TSH a episode of thyroiditis and were subclinical hyperthyroid 🤦‍♀️ nothing was ever done and I was never informed as I said my son found this in my records, ho and I was diagnosed with chronic fatigue, fibro to.. 😆

LindaC profile image
LindaC in reply to birkie

So sorry and sad to hear that - mine is not so extreme as yours, but I've met someone in similar circumstances [also treated dreadfully] - yet many of us lose decades of life due to 'The Boys' Club'.

Yes, I got my medical records in 2018, after years of abuse [not being told of prior results - even with a heart issue - and, whilst GP accepting the 2010 diagnosis of Dr S and NHS prescribing Armour for almost 6 yrs. The same one as you UN-dx'd me. in 2015, on the basis of ?!? and I've had nothing but 💩💩since... Oh, you can't say anything or the school laddies pass it around!

My very best to you and hope your son can help. xox

birkie profile image
birkie in reply to LindaC

sorry to hear you had the same 💩 Linda, my thyroid was ripped from my throat, and all I was told by the surgeon was.. " you will now be hypo and take T4 and never look back 😂😂😂😂😂 I absolutely wish that were true, I've struggled with T4, not to bad on T3, but my surgery wanted me off it due to my TSH being 0.05...😱😱😱😱 Ho he'll she's gonna have a heart attack, so been back on T4 since May and I'm hypo, been waiting on liquid levothyroxin since Aug 3rd, just found out today the pharmacy can't get it due to a supply issue, "we just can't get it" ho well that's OK Mr pharmacist, "I'll just stay on this medication that's causing me side effects and is making me very hypo" other pharmacist piped up to tell me even diabetic patients are finding it hard to get insulin 🙄 I said "well gps should be up in arms their patients are not getting the medication they the gp /specialist prescribed 🤷‍♀️ you could here crickets in the pharmacy, 😂😂😂😂🦗🦗🦗still wouldn't want to eat these critters tho😂😂😂.. I hope your getting sorted Linda👍👍❤️

LindaC profile image
LindaC in reply to birkie

Can't imagine not having a thyroid and still being treated in that manner! birkie, these half-wits should be prosecuted. Hardly surprising that you're struggling with T4 - without a thyroid!!! Bet you could hear crickets... oh my! Someone, Somewhere, need to DO SOMETHING about these knackers! Take care, keep on... best to you xox

arTistapple profile image
arTistapple in reply to LindaC

Love that phrase “Medical Misogeny”. I will definitely pinch it. Rolls off the tongue.

LindaC profile image
LindaC in reply to arTistapple

Know what I'd like to roll off their tongues! 👺

waveylines profile image
waveylines in reply to LindaC

Lets hope they learn to recognise the scandel this century Linda.....currently all that happens is that their explanations are in the land of fantasy & defy all logic....I think its them with the mrntal health issues not us non treated or under treated hypothyroid patients! Lol....

LindaC profile image
LindaC in reply to waveylines

Totally, waveylines... I've actually intimated this in writing to the garbage that I've received following two 2015 consultations... line by line, sentence by sentence, paragraph by paragraph, following their shenanigans back then, Later, it almost culminated in them suggesting that I was making a complaint... ;-) Oh, this one went on a while: I got too ill [several issues] but it's still not over... no longer a fat lady but I sure haven't stopped singing! ;-) (Left without a dx from 2003, 2007 [heart problens throughout], Feb 2010 Dr Skinner saved my life! Huge story... mostly garbage.

One of my last letters... last ones are scandalous - bone blood test taken without my knowledge - clearly so he could 'prove' T3 was harming me - a whip-snap GP foolishly gave me a copy more than two years after the event... I stared asking Q's, I'm surprised I'm still alive, given the level of serious illness that I was never informed of. So, 2 plus years of not being informed AND THIS test was not even done to protocol, plus he refused to re-run it! Eek, utterly nutterly!

Letter: August 2017

Thank you for your (quick off the mark) letter 25th July 2017, in response to mine of 24th.

NHS Patient Relations ‘Concerns and Complaints’ Department contacted me to ask about ‘my complaint’, to which – I am sure you will know – I unequivocally stated that no complaint is being made: I am ill not dim!

The medical concerns that I have raised are with a doctor - an endocrinologist – not a Patient Relations Team, for it is you who requires those (patient communication/ relation) skills to complement medical ones.

Respectfully, it is disputed that you are at all “Sorry to hear that [I] am still not feeling well”; as you said to me in 2015, “You’ll likely never know what it is”, nudge, wink! Do you believe that I could have improved by now, (notwithstanding you bizarrely choose not to believe me/many others), despite my describing [measureable] worsening symptoms? Chronic illness(es), particularly those long untreated, are unlikely to improve over time.

Sufficient people attending clinics also confirm unsatisfactory treatment from endocrinology departments; sufficient ‘tambourine shakers’ are out with petitions, attempting to tackle your discipline: I prefer directness.

Most patients (outside of endocrinology) would view it as being highly appropriate for any doctor to:

Think beyond prejudices in respect of doctors who have diagnosed using clinical judgement, exam and bloods.

Discuss the significance of a very high beta crosslaps result, to enable a patient to make an informed decision.

Demonstrate how knowledge and skills can, at times, go beyond existing limited, blinkered and flawed views.

Consider that masses of people continue to suffer due to fatally flawed tests and petty overreliance [on T4].

For the avoidance of doubt, I shall not be contacting you in this manner again, lest you have ‘legal beagles’ writing for you next time, because you do not like what is being said to you in the course of your work, yet where many of us loathe being so glibly written off. I am beyond disappointed that in the Twenty-First Century, people are treated worse than we could have been in the late Nineteenth/certainly early Twentieth.

Yours sincerely

waveylines profile image
waveylines in reply to LindaC

well said Linda.

Oh the lovely Dr S. Saved my life too.....eternally grateful to him. Outraged at how his profession treated him. My GP did, after four years of chronic illhealth, finally diagnose me when my TSH finally tipped over the threshold by .10! By then I had all the classic physical features of hypothyroidism.....but if the blood results dont neet the criteria tough. To this day I do not know how I drove a 200 mile round trip to see Dr S. as my GP had left me languishing on 50mcg despite a stonking high TSH level telling me all was gr8. For him maybe not me!! I do not understand how these medics get away with such gross mismanagement of treatment but have since realised it crosses many areas & is as common as muck. These things are always top down lead so sums that one up nicely.

At least I learnt my lesson and take no truck from any medical proffessional these days.......am sure theres a Beware label in bold on my medical records.....but I dont care. I hope it makes them think!! Am as well as I am but no thanks to them but thanks to online support & my sheer bloody mindness to find a solution. Having said that there a few diamonds out there - you just have to find them!

1tuppence profile image
1tuppence in reply to waveylines

Yes, diamonds there may be...you not only have to find them, you have to get them agree to see you. I've been trying since May to see one in particular...where are we now? mid Sept and no further forwards, despite willing to see him privately.

waveylines profile image
waveylines in reply to 1tuppence

oh no 1tuppence so sorry to hear that. I think with the nhs being in duch dire straits more and more people are diiging deep & going private so mow they have a waiting list too. Hope you get an app soon.

Country is going to the dogs...lol

1tuppence profile image
1tuppence in reply to waveylines

Thank you for your kind words, waveylines.

Now sourcing my own T3 to trial. I can't bear the thought of going super hypo again.

waveylines profile image
waveylines in reply to 1tuppence

Good for you...... The disgrace is you have to resort to self treating. The shame is on the medical profession & its sytem that so many are incompetant.

I went off piste for three years. Felt great. And the freedom of not having to play the game, or tip toe around egos, begging or pleading was fantastic.....a lot less stressful! Sadly am back in the system now and have fine tuned the art of polite stroppiness! 🤣

Hope it works out for you...

1tuppence profile image
1tuppence in reply to waveylines

Your situation waveylines, is one of the reasons it's taken me so very long to take this step.

It's scary.

But so is the alternative.

The after-effects of taking that extra Levo, and finding it lifted my T3 without making me have signs/symptoms of being hyper, can't be ignored....at least by me. And I'm the one who is living in my body.

I'd been thinking I needed help dealing with the pains in bones and joints as walking was becoming more and more difficult. I've booked in for steroid injections in my knees, as they were becoming more and more painful. This past week I wonder if I need them? I'm moving much more easily.

My GP cutting my Levo back down has meant I simply can't ignore the difference made, I can't afford to feel as ill as I did on the lower dose. What to do? Trial T3....in conjunction with the lower dose of Levo.

waveylines profile image
waveylines in reply to 1tuppence

oh bless you.....I hope my situation I hasnt stopped u? I could barely walk....my joints hurt so much. Getting onto the optimum dose of levo transformed that.....the aches went away but it was for me ndt that sorted me out fully.

We live in a weird world where the powers that be appear to not want us to get well. Ive just discovered that theres been embargo put on the purchase of b12ampoules from abroad......I ask why? Oh why indeed.... Seems European countries have been banned from selling the ampoules to us from our government. In Europe you can buy over the counter at any local pharmacy. I despair! Big brother controlling our right to choose.....

LindaC profile image
LindaC in reply to waveylines

Oh waveylines, you should see the actual stuff 😅👍💝

Yes, the lovely Dr Skinner was - some might say - 'hounded to death' [by charlatans]! All he ever did - outside of his important virology work - was do his best to help patients [one 'set up' to make complaint' via typical 'obedience to authority' woman... which is HOW they get away with so much!] - whilst those we get to see seem to enjoy their 'without evidence' sick conduct. Their audacity knows no bounds!

Yes, same here, with their silly little ranges [where the devisor stipulated TSH was to be an adjunct NOT a basis for diagnosis], yet you having to wait until TSH of 10!!! Madness, sheer and utter crazeee that they could shift their little rules.

Pleased you challenge but I guess our reputations do proceed us and, for me, the end result if not good. Glad to hear that you're well as can be... I had longer term issues with low body temp [different from the 'freezing shins' where they ignored me from 2013] and heart issues BUT so long as I stand, I'm an Amazonian! Wish I could find a diamond right now... all I see is clay footed bogeymen!

Keep well and my very best to you and all thyroid patients. xox

waveylines profile image
waveylines in reply to LindaC

Thank u Linda. I have heart issues now (for once currently well managed) ...consequence of other necessary treatment. I hope you get sorted. Its so hard to.keep going to find a way forward when you feel ill & have to do battle with the system. Big hugs xx

LindaC profile image
LindaC in reply to waveylines

Thank you so much and to you also. My heart issues were the first signs/symptoms summer 2003 - IGNORED [TSH 0.14 just within range] - 2007 IGNORED [TSH just 0.11 within range...hey, wasn't I doing well over 4 yrs]. I've said somewhere that the private cardiologist's first Q was about my thyroid status; neither he nor I had been told about it. Cardio dx'd heart issues and only Dr Skinner was concerned about this delay! Huge improvement from 2010 for a few years but... another tale. This is all disgusting... huge hugs and let's celebrate the memory of 💛❤️💚

Dr Gordon Robert Bruce Skinner , MD.DSc. FRCPATH, FRCOG
buddy99 profile image
buddy99

Immediately the situation came to mind in which my Synthroid dose was lowered, and I was not feeling well. I told the endo that I felt so much better on the higher dose and her response was, "That's because you were hyper". I did not feel "hyper" (in the sense of over the top or super excited or some such), I just felt "normal" and functional and alive.

birkie profile image
birkie in reply to buddy99

hi buddy 99♥️

My gp told me I was hyper with T3 at 5.3 and TSH 0.05)😂.. I sat in front of her and asked how did she come to that diagnosis as My T3 was in range, she very rudely said "but your TSH is 0.05" I then said.. "I have no thyroid so that's OK, I don't feel hyper and believe me I know what hyper feels like, unbelievably she said" you can't have had a full thyroidectomy as you are producing thyroid hormones" I said "I'm very positive I had FULL thyroidectomy in 2019 and I'm producing thyroid hormones because I'm taking T3.. 😂😂😂 You can't make this 💩 up.. How unprofessional of this gp who no doubt gets paid very well for doing her job, hell she wouldn't even look on the computer to look up my thyroid op🤦‍♀️🤦‍♀️🤦‍♀️

LindaC profile image
LindaC in reply to birkie

FFS! They don't seem to get the people in your circumstances need T3!! I do/did with a 'quite small thyroid'. What on earth are these... 🖤🦕👾

buddy99 profile image
buddy99 in reply to birkie

Don't you just want to bang your head (or, just popped into my mind, hers) on the wall?! In my whole "career" in Hashimoto's I only had ONE (absorb this, it melts on my tongue "One" mmmmh) doctor who looked stuff up (any stuff). He was awesome and I mistakenly thought that all doctors were like that. My bad.

waveylines profile image
waveylines in reply to birkie

I wonder if she tells her diabectic patients the same!!

5 plus years of training leads to this? Heads need to roll....

birkie profile image
birkie in reply to waveylines

I spoke to the endo on 3rd Aug, she prescribed me liquid levoroxine for which I'm still waiting to obtain through my surgery, I ask her if liquid levoroxine is hard to obtain as T3 is, her answer.. The same as the lady at the pharmacy, I have patients who are struggling to get their insulin 🤦‍♀️ she and the rest of them should be ashamed to even admit that without trying their best to get their patients the medication they need, I really want to go to my gp and say.. "is it OK if I just don't take my thyroid medication from now on seeing as you can't get it for me" ( gp reduced my T4 from 50mg to 25mg because of side effects) wonder what the answer would be?? Because at the moment they don't seem to care im hypo and have been since the end of May,.. but hey your TSH is to low and We're decreasing your meds immediately "dumb ass doctors" 😂😠😠😠😠

waveylines profile image
waveylines in reply to birkie

thats even worse.....in your letter refer them to the endos letter! Thats disgrace!

Go onto Thyroid uk for the pharmacy list of suppliers in the uk. U can have your script sent anywhere in England if thats where u live. Ring these pharmacies to find out if they have it or can get. Sadly the GP has no responsibility to find a pharmacy that stocks it for you.

waveylines profile image
waveylines in reply to birkie

OMG! 🙈🙈🙈 She shouldnt be practasing!

My biggest fear is that as am aging what on earth will happen if I become unable to fight my corner. Some idiot will finish me off with some stupid dose change or stopping heart meds that they thought were antiicoag tablets when they werent etc....(they tried) it makes me wonder how much harm has been done out there and is being done! I shudder....

birkie profile image
birkie in reply to waveylines

exactly how I feel waverlines, I live alone and my son lives in the city around 2 hours away, by train 😔 if I fall he just can't get to me fast, I have to go to my appointment on my own and the gp and endos just talk over you, I have no back up😤 unfortunately I did take a friend in to my appointment on the 3rd August as she was off work, I wish I hadn't as she as no idea about thyroid or parathyroid conditions, the endo was just droning on about blood tests and being in range ect🙄 I did jump in because she wouldn't let me get a word in, and my mate said let the endo talk, 😤😤 my friend is never at her gps so she as yet to come across these specialists when you are genuinely ill and you get crap off them😤😤😤

waveylines profile image
waveylines in reply to birkie

argggghhh not the person to take next time. Unless she has strict instructions to keep quiet & say nothing! Sometimes the presence of a second body can do wonders for politeness from professionals I find, others feel intimidated! A friend took me to support her....the doctor flapped when they saw me (am I that scary?) & then coped by trying to blame my poor friend for not improving. I chose carefully a couple of sentances said quietly & calmly to that doctor which brought that charade to an abrupt end. We left at that point....I said to my dear friend never see her again...ever! She never has.

birkie profile image
birkie in reply to waveylines

could have done with you in my many endocrinologist appointments 😂.. The ones I have come across seem to have that almighty complex, they know everything.. You know nothing!! When I was in thyroid storm I finally managed to get the uptake scan to which the endo didn't think I needed, I told him I was leaning towards it being graves! He said well I think we will see, a few days later he rang and asked if I could see him the next day, when I sat down he said I've got Yr uptake scan bk, before he could say anything I said" is it graves like I said".. "Yes but graves thyrotoxicosis" so I said.. "can I have Your fee for that diagnosis" 😂😂😂😂.. Surprisingly he laughed😂😂😂😂😂

waveylines profile image
waveylines in reply to birkie

🤣😂😅 well said! I hope he obliged!!

1tuppence profile image
1tuppence in reply to waveylines

Where do you live? want to come with me next time????? please :-)

TSH110 profile image
TSH110 in reply to buddy99

I hope you told her that, they need challenging. I told one that was fussing about a low TSH that I knew full well what it was like to be overactive and there’s no way I’d want to feel like that ever again and I now felt perfectly normal. I explained about NDT and because the the dose was right the TSH no longer demanded more thyroxine to be made because none was needed. She was quite young and was very interested in what I had to say. Wanted to know how I sourced it but she wasn’t judgemental and said she thought I knew a lot more about it than she did (refreshing) and she left it at that but she couldn’t really reduce my dose anyway she was only a GP not an endo, my endo was very kind but wish he had tried T3 when I said I was still feeling awful, I didn’t see him towards the end of optimisation (only TSH but at least aiming between 0.2 and 0.5) just a witch of a thyroid nurse, who knew full well my T3 was bottom basement, pity I didn’t push to see him again, but I knew nothing about T3 back then so wouldn’t have knuwn ti ask if he’d prescribe it with T4. It was here I learned of it years later and I was very angry tgat I had never been told about it . Trouble is many might not be as open minded as that GP, but whoever, I would just stand my ground and say it’s my life and I’m not letting anyone ruin it for me again.

serenfach profile image
serenfach

I think I may be 100% black bile at the moment.... :)

Geogeor profile image
Geogeor

I haven’t read every single one of these comments so may be repeating what someone else has said but ..

All of these articles about why thyroid patients essentially don’t deserve to have “enhanced wellbeing” (feel well) remind me so much of the articles, speeches and books written in the late 19th / early 20th centuries about the imperative not to give women the vote.

There is nothing that makes people cling to false ideas so much as the realisation that their historical time is over and it is time for a new, evidence-based epoch.

waveylines profile image
waveylines in reply to Geogeor

scarily though.....they argue that the evidence is science based....even if it's fatally flawed!! 🙈

Geogeor profile image
Geogeor in reply to waveylines

Yes and so long as you don’t listen to any real patients, or what they have to say about their condition, the “evidence” all stacks up.

Who needs health when you can have an arbitrary blood test number instead of it?

birkie profile image
birkie in reply to Geogeor

blood tests... Bar humbug😤

Not related to any thyroid conditions but related to my dear dad who for months saw his gp about the loss of his voice, firstly I should add my dad smoked from the age of 14 which his gp was aware of but managed to pack smoking in for over 15 years before his voice went nuts, the gp first said its laryngitis.. Ok that fitted.. 2 months on lozenges his voice was no better gp gave him more lozenges and did a miniscule blood test which came bk as all normal, 1 month later again more lozenges and a blood test all normal, gp was about sick of my dad by now, my mother had to attend another gp appointment with him as he had totally lost his voice now.. Again he tried to prescribed lozenges, my mum refused saying we needed him to go to ENT.. Gp was annoyed but refered him and again did a blood test... All normal.. ENT found a malignant tumor in his lung and voice box.. He died of lung/throat cancer 5 years later.... So much for doing blood tests... 😠😠😠😠😠

Geogeor profile image
Geogeor in reply to birkie

Yes. I’m sorry to hear about your dad. I know someone who died of lung cancer (a non smoker) last year and was told for a long while that it was asthma. By the time he knew what it was there were barely any options left.

GPs should be asked to fill in a form before they ask for bloods to say what they are wanting to rule out / in. And then, once the results are in, to say what else they want to rule out or in, if tests drew a blank. Instead of which we are sent off to have tests so that we go away and stop asking questions. We are then given the test result along as it it’s self-explanatory and no analysis of what it means.

Many, many (most?) cancers are not visible in a FBC test.

birkie profile image
birkie in reply to Geogeor

yes I agree cancer would not be picked up on a fbc.. And if my dad's voice had returned to normal he wouldn't have been bothering the gp as much ad he did, but as you say if all fails try a different route, but some GPS fail to do this just going along with medication in the hope it will eventually work, but with cancer it's a different matter, gp did the same with me for over a year with hyper symptoms, and telling me it was the menupause..🤦‍♀️ I didn't know you could loose your thyroid due to the menupause 😂😂😂😂😂

Tythrop profile image
Tythrop in reply to Geogeor

Yep ,its loke a war betwen doctors and patients with the doctors having the ammo but still they feel vulnerable and perceive patients as "the opposition" .All of this suffering ,and much could be alleviated by doctors prescribing T3 or Armour ndt. Its like a war between Doctors and patients .Sorry but I keep coming back to litigation .

Geogeor profile image
Geogeor in reply to Tythrop

No need to apologise.

And yes - depriving people of their lawful entitlement to prescription medication is a breach of their rights.

We are in the position of having to beg for what we need when we should be able to expect it, and not waste 3 years each doing as many members of this forum have done in writing letters. This is degrading treatment and many of us aren’t successful in our letter writing campaigns either.

So litigation does seem the logical next step, I agree.

waveylines profile image
waveylines in reply to Geogeor

I say put patients in charge of their treatment.....not doctors!

TSH110 profile image
TSH110 in reply to Geogeor

couldn’t agree more they are patronising old farts

waveylines profile image
waveylines

sorry Diogenes..... ran away with my posts. So grateful for all u do though. And that article would be funny if it wasnt so tragic......never mind the harm that goes on and on & on whilst these idiots pat themselves on each others back! One can only hope they develop hypothyroidism with conversion issues......can you develop something to induce this state for 6 months or a year so they can sample the life they inflict on others?

Hillwoman profile image
Hillwoman

Pity those of us who dwell in north-east England!

Tythrop profile image
Tythrop

As my friend snd retired GP with Long Lymes disease says the thing that gets her is that the medical professionals are saying to sick patients "no you're not ill" .This is abuse to people who are truely suffering illness .

You may also like...