Questionnaire for thyroid research

[Salphy]

Hi, I'm lucky to have a really good endo who is trying to secure funding for a randomised controlled trial of NDT.

He has sent me a questionnaire and asked me to distribute it to try and get as many responses as possible so they can prove the need.

If any of you wouldn't mind completing it and PM me your email address I can send you the questionnaire to complete then return it to me through email so I can forward it on?

(I'm going to check if he minds me giving out his email so people can send it direct but until he's confirmed that's OK please send it back to me. I am an nhs healthcare professional and governed by my professions standards including confidentiality but it doesn't ask for any patient identifiable information so it would only be your email I'd know)

He's asked that you complete it based on when you were at your worst. And a second copy of how you are now if you have improved to compare. I think it may help if you stated on it why you feel better.

He's asked me as I'm one of the only ones he's seen on t3 as I bought it myself to try. (The ccg won't allow it to be prescribed in the area so my gp does a private prescription based on my endo's recommendation.)

Thanks

[MaisieGray]

As you are wanting to do this as a presumably self-interested patient of your Endo, not a professional, I'm not sure that your professional standards would necessarily be applicable in this regard in providing safeguards to those responding. However, that not withstanding, I'm confused that you mention a trial of NDT, and then that you are taking T3; and do not specify what particularly, needs to have been the cause of us feeling better. Also generally describing how we felt at out worst, may have no relationship, directly or time-wise, with the point at which we started alternative medication. As he is using the data collected to support his funding application, would the data not need to be collected more formally and within prescribed criteria, rather than randomly through a third party with whom he has a relationship and who is his patient? I'm sorry but it sounds at best, a tad Heath Robinson-ish, unless I'm misreading your post.

[Salphy in reply to MaisieGray]

No idea who Heath Robinson is sorry. But please don't feel like you have to complete it. I'm just passing the questionnaire on. Surely the more research done the better for future thyroid treatment.

They are wanting to do the trial on NDT. But for now they just need to prove the need for other treatment options.

Considering people have been struck off for things outside of work time, I always assumed the standards apply at all times. But really just trying to show I'm not wanting to steal everyone's info

I'm happy to send the questionnaire to you if you'd like to see the questions. It doesn't ask about medication timings etc. He just asked me to complete a second one to compare how I was to how I am with a different treatment option. But the main thing was to get them completed at people's worst to show how thyroid conditions can effect people.

They as a department have already had quite a few responses off someone sharing on social media so I'm not the only one he's asked they just need as much data as possible.

Anyway, nothing sinister, just trying to help.

[Salphy in reply to Salphy]

Also it was just me he asked to do a before and after for comparison. I was just passing that on there's no need for everyone to do it I just thought it may help them to have others as they don't have many on t3.

The main thing they're interested in is getting as many of their questionnaires completed and at people's worst to prove how it can effect them.

[MaisieGray in reply to Salphy]

Heath Robinson was an English cartoonist, illustrator and artist, known for his drawings of whimsically elaborate machines to achieve simple objectives; and so describing something as Heath Robinson-ish implies it is similar.

Yes if you do something that brings your employer or profession into disrepute or shows you are unfit, it's possible you could suffer the consequences eg say a hospital pharmacist was found to be dealing in illegally imported unlicensed drugs - no financial loss or drug connection to the hospital, but clearly not the behaviour expected of them in their hospital post, so they might reasonably expect to lose their job. But my point was that those affected wouldn't be protected, so in that example, someone suffering the consequences of buying those illegal drugs wouldn't be protected by the pharmacist's regulatory standards because it is outside the remit of professional or employment standards.

"Surely the more research done" - well, quality research yes, but not otherwise, which could ultimately invalid the very case being researched. The integrity of research protocols is absolutely necessary.

I'm certainly not implying anything sinister, but bad things can come out of good intentions! It may be that if the full facts were known, all would become clear, as presumably he has put forward his study proposal to the relevant authorising panel and gained its approval; but as presented, it throws up more questions than answers.

[Salphy in reply to MaisieGray]

Yes I think you may be reading too much in to my casual post sorry.

If it helps it is Salford Royal that need the questionnaires to use to show the need and secure funding for a randomised controlled study. Which then will obviously be randomised and controlled and not swayed towards people's worst symptoms. This isn't the actual study.

But yes as a professional who works under confidentiality standards if I was to do this and broke that it would bring the profession into question. So whilst people may not have direct legal/financial protection me sharing information and breaking confidentiality would certainly be relevant and allow them to make a complaint and not worth me risking my job. I was just trying to reassure not imply any legal or financial protection. But like I said there's no identifiable information i'd only have the email address it was sent from.

Anyway I'm in touch with thyroiduk who are also going to try and help. You may feel better completing it through them if you'd like to be a part of it.

Have a great day

[soupybp in reply to MaisieGray]

Funny aside, I am in the US. I didn't know Heath Robinson either...I would have referenced Rube Goldberg - he would actually build the confounded things. We have Rube Goldberg competitions. People have to accomplish a certain task and it must include a minimum number of steps...more is better.

[MaisieGray in reply to soupybp]

Thanks for that soupybp , it's great to add to my references; if I can only remember his name, brain fog permitting, I can add a more international flavour to my comparisons! Failing that, I may have to accept mentioning Heath Robinson, and add "and there's an American guy too, who had a similar quirky approach" lol

[Hashihouseman]

Count me in

[Salphy]

Thanks Janveron1

I'll send it now but you might wna delete your email off the thread so others can pinch it 🙂 x

[SlowDragon Administrator]

In reply to your more recent post

Ask endocrinologist for T3 on NHS or if he is private, fog a private prescription

A CCG is not allowed to ban prescribing of T3

If your NHS endocrinologist says you have clinical need you should be prescribed

Which CCG area are you in ?

openprescribing.net/analyse...