I saw this on Facebook and tbh it looked like an opportunity to gaslight poor struggling undermedicated thyroid patients. They will have an Endo to give advice but honestly I can't think of anything worse. 😆
Sorry, probably not the right attitude. I'm probably too bitter about the whole thyroid treatment thing.
I had a bit of a look around the BTF site earlier. It was exactly as I thought, negative towards T3, pushing Levo only. Oh and lots of gaslighting about remaining thyroid symptoms being caused by 'something else'. I'm not pro BTF btw. 😅
I did try a 'back to exercise' course run by my local council which I was assured was suitable for me having been housebound for some years. Well after about 10 minutes I had to take more and more breaks and eventually just sat at the side of the hall in horror with my self esteem in my boots. There really doesn;t seem to be much for those of us who get PEM and are REALLY starting from scratch. I doubt very much this programme would be suitable for someone like me.
I think you're labouring under the impression that these people have the ability to change their minds. Sorry but I'm not so sure.
Anyway, it's likely to take me many months of taking added T3 to make some kind of a recovery. It's early days for me and if I turned up right now they'd look at that like T3 was a failure for me.
yep why I registered to get my opinion over to them of weightloss prior to TT and with no thyroid. Will reserve judgement!! 😂 Been on t3 4yrs. So intend to shove that in their faces every opportunity I get. I’m not bitter. 😂
i'll bet you 50p that it is basically a programme based on the same form of slightly toned down CBT / GET that i was given when referred to a CFS/ ME specialist service a few yrs ago. (CBT= Cognitive Behavioural Therapy, GET =Graded Exercise Therapy)
It will probably go something like this :
1) find your exercise 'base line' at the moment .. ie . what you can do repeatedly/ regularly without it causing you increased problems .
2)Then very gradually increase that level by tiny increments . without over doing it ie. only increase activity time/ intensity once the previous level is sustainable .
3) et viola .. you will get fitter and loose weight like everybody else does, because there is nothing wrong with you that would stop this happening, and everybody who sticks to the programme and who stops eating muffins on the sofa , and who deals with their unfounded 'fear' of exercise , and their incorrect belief that they have an illness that limits weight loss/ or exercise capacity ..... will improve.
If you don't improve , then you were 'unable to fully commit to the programme at this time'
Then they'll take all the data and write a study showing 75% of hypo patients lost weight and improved overall 'wellbeing' when they put the pizza down and got off their arse more often.
Then they'll give it to their mate Simon Pearce , (head of the BTA , which is the professional body for endocrinologist's which has curiously close organisational links to the BTF)
Then it will magically pop up on the BTA's twitter feed in 2026 , cited as evidence that "psychotherapy combined with exercise improves hypothyroid patients sense of 'wellbeing' and contributes to successful weight loss" .
and the providers of CBT (who are currently really pissed off about not being allowed to call it a 'treatment' for ME/CFS anymore in the latest NICE guidelines ) , will all be able to say CBT is an effective treatment for fat/ lazy / deluded patients who blame their weight/ exercise issues on having a previous hypo diagnosis ,and get funding from endocrinology dept's budgets. and then as well as your endo taking away your T3 ,they will be able to refer you for CBT at the same time.
But then ~i would think that, wouldn't i , because my previous encounters have caused me to become really cynical.
i never had a weight problem , even when diagnosed .. so perhaps i should just shut up now and go and have a bit of chocolate cake .
p.s
definitely looks like they are collecting data for use in a study . they are actively encouraging people without thyroid conditions to enter too ( probably for use as a 'control' group )
Heads up ,i think we need to keep an eye on new stuff using this word 'wellbeing'.
It's been popping up a lot recently ,and my suspicion is growing that it's being used as a new ( and extremely 'wooly' ) outcome /measure in the kind of 'thyroid' research particularly favoured by those who don't (and probably wont ,ever) believe there is any real problem with Status Quo /Levo / TSH mantra.
I've recently seen it being used to imply a sort of 'high' (in the same way that T3 has in the past been compared to speed by endo's) eg . patients may report they prefer higher doses of Levo due to this increased sense of 'wellbeing' , but that doesn't mean it's good for them.... or words to that effect.
Can't remember where i saw it exactly , but fairly sure it was some research linked to in relation to the recent BTA / deluxe ginger cookies Twitter thing .
To add to the bigger picture in case you don't know Eeyore - Simon Pearce of the BTA is also on the endicronology team at a major hospital in Newcastle which boasts the largest endicronology dept. in the North-East and yet none of them believes in combo or NDT for patients. Even Diogenes made mention recently that the Newcastle crowd wouldn't change their minds even at pistol point!
at my most hypo I couldn’t have completed 1). If ‘having a daily shower and getting dressed/to the sofa’ was listed as a goal I’d have struggled let alone any physical jerks.
Hmmm CBT really helped me, but it’s made me braver, clearer minded, more self confident and I was utterly spoiled rotten by having an experienced psychotherapist who was retraining in CBT and I was his Guinea pig, so I got CBT+ he gave me academic reading, research and models I found very useful even now. I was diagnosed hypothyroid by GP in week 10 of 12, he held his hands up and said ‘of course you are’. But if I hadn’t done weeks 1-10 I’d not have had the push towards self care and self advocacy in health and the impetus to battle the GP reception dragons and get an appointment for general malaise, hypochondria, work shyness, laziness, fortnightly periods and weepiness. I realise CBT is not all equal and have been quite shocked to read recently about it being described as gaslighting us back to taking responsibility for our responses to triggers. I guess that is true but it’s highly nuanced.
I too think reading this will impact my wellbeing 🤣 but will give it a go.
it does depend very much on who is delivering it .. mine was also very helpful in some areas, ( mainly to learn to pace myself rather than boom / bust , and to stop beating myself up about not managing to complete everything i needed/ wanted to do ) .... but as i was already diagnosed hypo and had been 'treated', my perspective on the help offered was rather different to yours.
I was given CBT once - over 10 years ago. This was for severe depression. It was situational - the depression was very justified.
I don't know what training the therapist had had, but the end result of the five sessions I had (which is probably more than I would get these days) was :
I just wanted to say that my heart went out to you when I read your post - perhaps all that most people really need when depressed for any reason is a listening ear and someone who genuinely seems to care and can empathise. At least now you are turning bad experiences into good by helping others with your very valuable knowledge - I envy you and am very grateful that you are here!
I might consider taking a look too just to see if there is any opportunity there to be awkward.
I asked a question to their medical helpline recently to see what their opinion was. Not impressed. A bit like responses from admin giving out results at the GP surgery really, but it was what I expected, as I made the decision to join Thyroid UK right at the start of my diagnosis after comparing the attitude of the two sites.
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