NICE Thyroid Disease Guideline 'Review'

[shaws]

This is a Petition Update.

I have just received a copy of the above. I haven't yet read it so have posted it here for action if it is required.

It will be interesting to know what they are going to ask.

tinyurl.com/ycuvc2wo

[Nanaedake]

Am I missing something? can't see a link but I'm reading tiny text on phone.

[smudger1]

No link?

[shaws Administrator]

Apologies in my rush I left off link. Then the link was too large so had to then make a tinyurl

Nanaedake smudger1

[bantam12 in reply to shaws]

Shaws those links go to the above members profile pages 🤔

[shaws Administrator in reply to bantam12]

I don't know why they go to the Profile pages, I assumed they would be alerted as usual by the red dot on the bell.

[shaws Administrator]

We have to click on various questions, i.e. yes or no etc.

[bantam12]

Anyone who signed the petition would have had this by email, I got it yesterday, the questions and answers don't give enough options, I gave up as some didn't apply.

[shaws Administrator in reply to bantam12]

I was unaware it had already been circulated. I didn't have an email. You are correct, it was short and not so sweet in that we are restricted mainly to yes or no. I think we should still respond as the more the merrier.

[bantam12 in reply to shaws]

But if we can't give accurate answers the whole thing is flawed.

[shaws Administrator in reply to bantam12]

Maybe we should personally let them know how inappropriate their questions were In that we couldn't respond as we want or needed to.

What about another Change.org Petition for us to have more input.

Maybe lynmynott might have a suggestion.

[crimple in reply to bantam12]

But that's how the NHS/ Nice likes it to be!!!!!!!!!!!!! The computer says no They only deal with ticking boxes yes or no in the same way that GP computer only deals with TSH becauseT4 and T3 have no place in our well being! In spite of the fact that a healthy thyroid produces T4, 3, 2 and 1 and calcitonin, the powers that be find it too difficult to understand that endocrinology is a complex issue and the way our lack of thyroid hormones affects every cell in our bodies.

It's much simpler to just concentrate on T4 and TSH. "Sorry you are still having symptoms, well that is definitely all in your head. Take some antidepressants" Pardon my cynicism, had a bad medication review at my surgery last week, computer said NO.

[Trixie64]

Thanks Shaws, have completed the survey.

[Kitti1]

Hi shaws The lady that is heading up our Patient Information & Experience group (we have created 5 headings from the NICE scoping document and have between 3 and 5 people working on each heading for our recommendations, which will be submitted during the NICE consultation period), designed the survey and asked me to circulate it using the petition update facility. I presume she has included the information she requires. Also I believe the survey facility limited the number of questions and the number of answers that weren't Yes or No.

One of other members, has independently designed (and paid for) this extensive survey. So if people could please complete this survey also

thyroid-survey-2017.datacho...

Hopefully people will also pick up on the fact that there is the My Story email address, where people can share their experience. This will not only be useful in the research of peoples experience of for our NICE recommendations. But they will also be submitted to NICE, as they have stated they are very keen to receive accounts of patients experiences.

Please send your stories to - [e-mail]

Unfortunately though Shaws, the petition updates seem to go out randomly and to only 200 - 400 people at a time, possibly a few more. But certainly not all the signees as Change claim. So please possibly prepare for more !

[shaws Administrator in reply to Kitti1]

It will be a pleasure. I don't mind answering/filling in/ responding in some way. We need change no doubt about that. Freedom to try alternatives if levothyroxine isn't improving symptoms.

Nanaedake bantam12 Trixie64 smudger1 see Kitti1's response above.

[shaws Administrator in reply to Kitti1]

I would also begin another new post for your thyroid-survey-2017 so that more members will see it and sign.

[Kitti1 in reply to shaws]

Thank you shaws I will, Craig has written a great survey and it gives lots of opportunity to express your opinion.

[shaws Administrator in reply to Kitti1]

I don't know if you have read the two following posts. Dr Skinner (hounded by the Authorities for treating patients on clinical symptoms) have collated all of Dr S's Research over the past three/four years since his death and are very excited as it will be a memoriam for him in a way. They still work at the same premises. He thought it was nonsense they way we were diagnosed/treated.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....