Thyroid UK
89,146 members103,659 posts

I wonder: new guidelines for endos to take away levo totally, after already refuse the t3?

I am only half way through the daily digest and already 3 posts with total withdraw of t4 and one or two with drastic reduction.

it looks to me (being on the outside looking in) that there is a new Trent going on in England to screw up the thyroid patients health even further. my hearth goes out to you!

sorry if I says the wrong thing here but I thought I can see a pattern emerging here......

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And in Wales, I had a nurse practitioner suggest a few weeks ago that because my TSH is suppressed maybe I don't need levo after all! I told him that if that was the case I wouldn't still be on it after over 40 years with only mid-range free Ts.

Today's threads are frightening!

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does that ment, if a person is on strong heart medication and doing fine.........

he/she can stop the the meds now?

I lightly shaky all over..... I don't understand what is going on.

I know it is happening in britan, but hey , we live in a small world now, and what is happening over there, can easly happening "down unter"

and yes, today's theads are a worry!

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The knowledge of the medical profession about dysfunctions of the thyroid gland is abysmal and we suffer due to them plus not getting better with continuing symptoms.

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Christa1,

I'm not sure what shocks me most. The rubbish advice/treatment from some endos or the number of GP practices which aren't contacting their patients about their test results.

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as if they don't care anymore, isn't it?

my guess is, there is a communication breakdown in the practice.....a new blame game with, too many cooks...you know what I'm getting at?

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Many do care but are now restricted to what they can prescribe to patients and it is levo alone in the UK. Many on T3 only had it removed without warning.

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yes shaw, I realised that, but now it clustered around an new Trent:

let's take the t4 away from patients who live 30-40 years in a happy healthy life on t4 and see what happened then?

bugger the damage it will do to the inner organs??!!

where are the scientist/doctors here?

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It is serious and very serious to have levothyroxine withdrawn.

They are neither scientists or doctors but complete imbeciles. They should ruin their own health first by having their thyroid gland removed and let's see how they get on with the 'modern' method of diagnosing and treatment.

I bet they would soon by handing out thousands of £££s to have an implant.

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Like you, I’ve seen a massive increase in posts like those in recent weeks. It really does feel like they’ve all been shown a video by a very uninformed “expert” or read a very dodgy article in the BMJ.

Terrifying incompetence.

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or new orders from the nhs?

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It’s not like levo is expensive though.

Although...

... is someone somewhere kicking off because you get free prescriptions if you’re diagnosed with hypothyroidism? Could that (spot the cynic) possibly have something to do with it??

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Jazzw,

Nope, can't be that. All prescriptions are free in Scotland, Wales & I think in NI. Just England pays for prescriptions unless med exempt.

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Yes. It’s such a fair system. :)

OK, maybe not that, then (though England is big. It must be a significant expense for England’s CCGs or whatever they’re called this week).

But something odd’s happened. It doesn’t feel like it’s a coincidence that we’ve had so many, “Well, let’s take you off levothyroxine altogether and see how ill we can make you” posts.

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Jazzw,

I thought for a while that it might be a new intake of rookie doctors doing endocrinology rotations but when I asked what age the doctors were they weren't young 'uns so must have been experienced endos and I was told that a couple were definitely consultant endos.

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exatly my feeling jazzw,

something IS going on here.

a simpleton like me had that thought in the beginning of my treatment: What if my testresults are fine after a year? will I be cured?

I even ask my GP, but he crushed my dream and said: sorry but you will be on thyroid medication for the rest of your life, without it...you will die!

great!

so, what is new? what is it we don't know?

I am still trembling, I just can't compute all this

God help us.

I feel like 7 11 all over!

( I am an empath )

I can stress out about a drowned earthworm after havy rain!

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On the positive side I don't think they are organised enough to run a conspiracy without it leaking.

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No, the very idea that they might talk to each other is pretty incredible. :)

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hahaha

thank you GG. that lighten my mood a bit. ❤️

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LOL

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Could just be that more people are joining, and telling their sad stories, than before. The number of members on here goes up every day.

I just say that to give a bit of balance to the discussion, because I'm a huge conspiracy-theorist, and a confirmed cynic. But, paranoia is a hypo symptoms, so who knows...

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yes GG I can see negative everywere I look! not an easy life, isn't it?

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greygoose

I thank G-D everyday for our GREAT FORUM . When I started my thyroid journey there was no one to turn to ask and give tried and true information's like we get on this forum . Truth be told that unfortunately everyday more and more people are diagnosed or self diagnose thyroid issues . Forums like ours educate inform empower thyroid patients . Is it a wonder our membership of our GREAT forum is growing by leaps and bounds . Patients are joining to ask learn to get well informed what Dr's don't share don't know or care in some cases .

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I dont know there is definately paranoia in the medical profession. In two weeks time am off to see the endo to endorse my ndt medication even thiugh the GPs are behind me taking it theyre scared NHS England or the GMC will get them if they carry on prescribing it even though Ive been on it for years on same dose....all due to the recent NHS England directive about t3 meds....barking..

I think hypothyroidism and its treatment is a bit like the Emperors clothes -the medical profession have been conned into believing it doesnt exist just like everyone was conned into believing the emperor was wearing clothes even though their eyes told them he was naked. The medical profession are the same they cant see what is right under their noses. Its not rocket science!! Now theyre being told no one really needs T3......and wanting people to survive on minimal dose of t4. The very last thing it is is Science based!!!

Ah no they say when people present with obvious physical signs of hypothyroidism its all in the mind fellow comrades. Mindfulness thats what we all need!!! If we die no doubt they will come up with some rubbish that it was poor nutrition or over eating or lack of exercise.....never could it be lack of appropriate treatment!! And so the Emperor remains unclothed.....prancing around naked in the street!! Theyre fools...complete idiots but in their madness they are ruining people lifes and health.

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I completely agree with you , it looks like they've been told to remove all patients from medication to see if they can stay off. It is ridiculous and I would be writing letters all over the place and getting this on national news.

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jepp kalicocat,

we need to keep a eye on this development, it is scary, isn't it?

the bad thing about it is, most of us are already stepped of energy and willpower, we can't fight it! I could not stand up to the "medical profession" I have to self medicate. I guess that is, what the NHS is after....... sick people to selfmedicate!

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Oh nooo they dont want us to self medicate that would look bad on them....as how do you explain getting better? Nooo they prefer its diagnosed as mental health issues or CFS......those diagnosi wont show them up....lol.

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