Thyroidologists simply can't stop categorising ... - Thyroid UK

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Thyroidologists simply can't stop categorising and deciding action or not by groups rather than individual patients

diogenes
diogenes

This new paper states that (probably among subclinical hypothyroids) that 1/3 don't need thyroid hormone therapy. Conveniently overplaying this by NOT saying "2/3 probably do". These papers simply don't hack it when a doctor is faced with A patient, not an assembly. It is a gift to those GPs who are inclined to dismiss rather than treat the individual as such.

Hypothyroidism May Not Require Thyroid Hormone Therapy

Daniel J. Toft

Published Online: 13 Jan 2021 doi.org/10.1089/ct.2021;33....

32 Replies

Or ignoring that in more cases than not, it is a progressive illness, many of us start as subclinical, and eventually become overt. If treatment starts earlier, I wonder if many of the symptoms, and their progression, could be halted (or reversed) without severely, and irreparably damaging sufferers' health.

jamjar67
jamjar67 in reply to Kitten44

I definitely believe this would have been the case for me 😢 ...

It seems to me that Doctors are being influenced more and more by data analysis and modelling. What happened to just listening to the patient?!!It’s a very dangerous path and leads to dangerous lazy impersonal Doctoring.

The pandemic with the need for distance and remote consults will only add to this as it’s a trend that will probably continue even after the current need for it has gone.

I sometimes wonder why some of them bother to become Doctors at all if they just want to look for reasons NOT to treat a patient.

His surname sounds familiar ? Could he be related ?

diogenes
diogenes in reply to Marz

Probably not.

DippyDame
DippyDame in reply to Marz

Son is a Consultant Plastic Surgeon in London. (ex Toft Talk video)

I first went to see a GP about being cold all the time when I was 17 or 18, then again at 20 when my hair started falling out, blood tests taken nothing to report, years of low mood, terrible pmt after pregnancies nearly 2 decades later finally told "yes well your tsh is elevated and has been for a while, but only just barely [ looks through records] yes....it has been going up steadily (never mentioned to me) but still 'within the range' You wouldn't be treated at that range. Even now we usually wouldn't treat you at this point. Your T4 is fine. But as you are complaining about weight gain maybe take 25mg!

TSH then around 9

Fast forward to today am extremely ill, chronic fatigue, fibromyalgia dustbin diagnosis and cannot survive without meds. I get bitter thinking about the years of suffering I could have avoided if treated far earlier when sub-clinical

The summary stops before detailing the definition of euthyroidism used when they say "....remained euthyroid after removal of thyroxine", But let me guess... was it , "results within 'normal' ranges"?

(and it doesn't sound like symptoms before /after were included in the areas they looked at either )

I wonder how this work was intended to help improve the current state of thyroid treatment for patients....?

I agree with you about the emphasis on 'not'......i used to work with small children , and you soon learn that if you want a particular outcome it's best to avoid the instruction being in the negative, otherwise that is exactly what you'll get.

"Carry the milk bottle carefully" is much more effective than "don't drop it"...

Apparently the little persons brain ignores the "don't" and just retains the active part of the sentence - "drop it' -so the kid walks down the hall so focussed on an image of 'dropping it' that this is often exactly what happens.

The way this study is titled, the readers of little brain will now look at patients with the instruction "stop it " stuck in theirs.

Reading all this, I feel so lucky that the first question my endo ALWAYS asks me after looking at my results is “how do you feel?”

You are lucky because when I told my Endocrinologist how ill I felt and burst into tears he offered me counseling. This is a while ago now but I got up and walked out of his clinic never to return.

I am really sorry you had and still have to go through all this. I was sent to a NHS endo who was absolutely useless and who told me to “wait and see” how my thyroid would evolve... Like you, I left to never return. I am now seen privately and the difference in care is staggering. But it is grossly unfair because not many patients can afford private care, and they shouldn’t have to in the first place.

What I do not understand though, is that levothyroxine is so cheap to produce! So why wait and wait and wait? And it’s not like they help you with other stuff to help control your thyroid. Treatment comes too late.

Hidden
Hidden in reply to HungryHungryHypo

I suspect it's because we're then entitled to free prescriptions, which could end up being very expensive for the NHS.

Personally, I'd be really happy just to get my levo free and pay for the rest if it meant people were being treated as soon as it became apparent their thyroid was beginning to struggle.

stiltzski
stiltzski in reply to Lora7again

Staggering. I wonder if he’d have said the same thing to you if you were male....

Lotika
Lotika in reply to stiltzski

My husband has often said that he thinks he would have been treated differently to me by male endocrinologists. And he’s not usually the first person to suspect that sexism is an issue in the world, despite the fact that he is coming up on 20 years of listening to my frustration about it more generally in March!

My NHS endo told me that feeling tired was just the lot of many mothers and it had nothing to do with my then untreated hashimotos... I saw red!

Hidden
Hidden in reply to HungryHungryHypo

My husband is so tired of my feminist rants by now but it's just so bloody infuriating!!! I know plenty of mothers who had high-needs newborns and infants who were still able to live their lives.

My (female) GP told it I was tired because I had 2 children in quick succession. There was 2.5 years between them!

'ok, maybe. But is it normal to put the Hoover round the front room and need to rest for hours?' she whittered on about some other nonsense but I'd stopped listening.

Call back the next day and asked to speak to a different doctor, who toed the same line but was kind about it so I didn't mind as much. (!) 🙄

Alanna012
Alanna012 in reply to Hidden

I once said to my doctor "I used to pride myself on my cooking, but now I'm so tired I keep ordering takeout as I have to rest constantly when preparing food'

Response?

"Well of course you'll be tired if you eat junk food"

🤦‍♀️

Hidden
Hidden in reply to Alanna012

🙄 it's so infuriatingly patronising!

If it helps; we eat a lot of takeout. 🥱

Ah well....same old, same old! Negativity!

Did they ask how any of his subjects felt!

Despite the fact that so many of us have been there, despite petitions to governments and despite the history of thyroid treatment we are further back than we were decades ago.

How many GPs look their patients in the eye and ask, " How are you feeling?" and if they do, how many actually listen as they turn to face their computer screen.

If they don't listen to patients how do they expect to help them....numbers don't speak!!

Didn't they tell them in med school that each human being is unique!

Result, we are all packed into ill-fitting boxes with a tick box attached.

Long story.short!

I needed to have a discussion with a new (to me) GP about why I self medicate and need a high dose of (self sourced) T3....she would not listen and started to raise her voice so I gave up rather than having an argument. This cropped up following an annual review.

She (understandably) wanted to do a lab test which I said would return with suppresed TSH and FT4 and FT3 very high.....that went down like a lead balloon!

I explained that because I have RTH blood tests were not helpful , which upset her more

Why do you ask for advice ( I didn't, but didn't say so) me if you don't do what I say!

I knew lab results would really put the cat amongst the pigeons.... I had deliberately tested privately before the appointment.

So, how do you dose without blood tests?

By symptoms and almost daily monitoring of heart rate, basal temp......

Silence.

Hmm! Well, I'll just write in your notes that you are taking x mcg.

The thing is she is otherwise a good GP, but like so many others her Achille's Heel is complicated thyroid diagnosis and treatment. I really didn't want any friction.

It was a horrible consultation that could have been so different for both of us if she hadn't decided that I should fit into a pre- determined box....and listened. I fully understand medics are busy people and possibly have their own problems but.....

I hate to think what else she wrote in my notes!

The GP I had when I started this journey had listened to me, explained what she saw as the possible dangers, was satisfied that I understood what I was doing, and left me to get on with it. I gave her written updates every so often to explain what I had done. She left the practice, to my sorrow.

I have no wish to be viewed as a difficult patient or to have to manipulate my dose to try to fit into an uncomfortable box and I'm not going to risk my life by stopping T3 - as was suggested.

In many ways I'm one of the lucky ones, thanks to support from experienced members and much reading I've been able to find out why my health was declining over roughly 50 years! My heart goes out to those who are at the mercy of medics who have closed eyes and deaf ears and a determination that they know all the answers. Papers like this one do nothing to change the miserable lives of thyroid patients who are left suffering.

I wish I had a magic wand.... and several million pounds to fund research to help change things!!

Apologies, I'm ranting from my soap box again!!

Be safe everyone...

DD

Lotika
Lotika in reply to DippyDame

I hear you! I don’t know about you, but my husband and I often like to have the conversation about what we would do if we won £x million in the lottery and one of mine is to set up a thyroid foundation to fund and carry out some of the research that we want done as patients. Next time they go running T3 trials I want to make sure that the methodology is sound, for example... I’m not sure these aims are entirely covered by the thyroid charities which already exist.

DippyDame
DippyDame in reply to Lotika

Our (almost) 5 year old grandson has set up , what he calls, his astrophysics research centre in the corner of his bedroom.Maybe we can persuade him to consider thyroidology instead!!

tattybogle
tattybogle in reply to DippyDame

great ...Set him on to it.. it's amazing what little people can figure out in the corner of a bedroom.I once looked over my 12 yr old lad's shoulder at the computer screen to see a surveillance camera shot of a dark car park in the rain....

What u up to ? says i...

Small boy in UK proudly announced that he'd found out how to keep moving the camera in USA to the left to annoy the poor sod who was monitoring it, and proceeded to show me how he did it.....

DippyDame
DippyDame in reply to tattybogle

Agree....but his daddy might prefer him to stick with the cosmos!

Your lad is definitely going places!

Love 'em...

tattybogle
tattybogle in reply to DippyDame

He's got up and gone already , and may well be round your house next time you call someone out to mend your internet connection.... :)

needless to say ,he didn't get his computer skills from me.....but he did keep taking them to bit's and leaving sharp bits all over the bedroom floor.

It's much easier to love em in hindsight...

Will keep an eye out for yours on the moon in a few years then.

DippyDame
DippyDame in reply to tattybogle

Great stuff......Ours have up and gone too....younger son, also computer mad since early days, now teaching computer science.

So grateful for internet connections and the experts keeping us all connected,.... and Skype

penny
penny in reply to DippyDame

I met a young man of about 17 who had built a nuclear fusion reactor in the dining room of his parents’ home. Luckily we live a long way away. Your grandson will probably join the club in a few years.

DippyDame
DippyDame in reply to penny

Gosh that was ambitious!!

It will be interesting to see if our little one follows in his father's footsteps! I'll be senescent by then.... so hope the T3 keeps working!!

tattybogle
tattybogle in reply to Lotika

For me this forum is one of the better forms of thyroid treatment research that currently exist.Thanks to many thousands of individual real life cases who've posted their usually self funded! full thyroid tests including fT4/3/TSH/ antibodies on this forum over about 7 years , i have decided that studying these with a critical mind to the fore, is much better "evidence based medicine" than most of the published studies i see.

It is readily apparent that T3 is not a magic bullet in most cases , and that often when it initially seems to be , it doesn't last , and takes further tweeks to get steadily improving health.

It is readily apparent that there must be much more going on that influences blood test results than just "thyroid hormone dose in = blood levels".

It is readily apparent that many Doctors adjust dose's of Levo using a sledgehammer to crack a nut, and end up with chaos.

On this forum , anyone with time and interest can follow someone's medication choices / blood results over years, and most importantly , can see them in relation to how the person felt, and then notice that once someone was doing well they often disappear for a few years , only to reappear when some one messed with their dose, or some other event caused them to go off kilter again.

All in all , a much more realistic study of the issue than anything i have ever seen published in any science paper anywhere , ever.

My NHS consultant has never once asked me how I was feeling or examined me which is in stark contrast to my private one as it’s the first thing that comes out of his mouth. The NHS always starts with “your TSH is depressed still......”

I had the best bit of news yesterday when I was called by the NHS hospital to say my appt had been cancelled with her as she’d gone on maternity leave - great got rid of her, but I can’t get too excited as I still need someone else to do a repeat script.

Hopefully as they have all been diverted to a COVID ward they will just repeat what I have been getting, which is fine with me and I will get on with managing myself as I always do!

Star13
Star13 in reply to Star13

BTW has anyone noticed that paragraphs on replies have disappeared even though you space them as such. Another glitch in the HU system!

DippyDame
DippyDame in reply to Star13

Mine seem ok.

Edit...

Ah! It was fine, but just checked on my last reply.....you are right!!

tattybogle
tattybogle in reply to Star13

Yes me too ... but have found if you go back and edit straight away , they stay where you put them the second time....

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