Petion for review of UK thyroid guidelines.

[Keylo]

petition.parliament.uk/peti...

I am not the creator of this petition. However, I agree that the NHS thyroid guidelines are flawed and thyroid care has been neglected due to a lack of knowledge. Since the guidelines were written, there have been many changes in research, science, testing and symptom evidence.

There are currently only 27 signatures. To make our voice heard that thyroid patients are at a disadvantage due to flawed guidelines, we need to show that we are concerned and that we are not satisfied with the care we are receiving and welcome change that can help. Signing the petition is the least we can do to raise our voice.

In my experience I have been misinformed by thyroid specialists about symptoms despite these symptoms I found on the NHS website as being caused by thyroid disease. In addition, there is ample evidence of symptoms of thyroid disorder not covered by NHS guidelines, such as galactorrhea, symptomatic subclinical hypothyroidism, antibody-negative Hashimoto's disease, miscarriages, infertility, hypertension, headaches, thyroid structure in any thyroid disease on ultrasound etc. .

[jimh111]

I don't think it is useful. It's wishy-washy and wasting money on reverse T3 assays won't help. Petitions generally aren't successful and poorly drafted ones hinder our cause. Serves as a distraction.

[DippyDame]

The Government should increase funding for thyroid treatment so the NHS can give patients access to a full thyroid panel, including a test for reverse T3.

I don't agree that rT3 needs to be tested, it is FT3 that is the most important result followed by FT4.

rT3 is the inactive form of T3 produced to protect the body from the effects of too much T4. ...and there is evidence that it doesn’t compete with T3 for receptor binding as has been suggested.

rT3 tests are expensive and have has almost no clinical value.

It is FT3 testing that we need to push for.

The powers that be need to improve the teaching of thyroid disease in med schools by using up to date verifiable research so that graduates understand the facts instead of working from the basis of wrongly held opinions which are failing patients.

I'm all for petitions but they need to be presented with strong, accurate detail...and this one fails to do that.

It will fall by the wayside and it's weakness will probably only serve to create disinterest in the subject

Sorry....not signing.

[Keylo in reply to DippyDame]

"The powers that be need to improve the teaching of thyroid disease in med schools by using up to date verifiable research so that graduates understand the facts instead of working from the basis of wrongly held opinions which are failing patients.*

Yes, I agree with that. It's up to you to decide. I just think every voice should be heard. I decided for myself. Little steps lead to big steps.

[DippyDame in reply to Keylo]

Keylo I wasn't trying to stop other "voices being heard"....just expressing my opinion. People are free to take it or leave it.

Of course I agree something needs to change but it will take a siesmic shift to do that, not a flood of petitions which will go largely ignored.

I've been involved in trying to change political will, it's a hefty machine to move!

[Keylo in reply to DippyDame]

Thank you. I appreciate your opinion. 😊

[diogenes Remembering]

When minds are fixed, petitions won't help. If not very carefully worded, the medical establishment will simply shrug them off as amateur and cranky. The one seems to be of that kind.

[Zephyrbear in reply to diogenes]

Good enough for me. I think I’ll pass.

[Keylo in reply to diogenes]

Many people do not know about the various thyroid problems because they have never heard of them and have no experience. So I think any noise is important.People need to hear about it and then they start to notice what's going on around them. If they see that there are so many petitions about various thyroid problems from many people, they gradually start to think that something is wrong. More petitions more noise.

One good petition is not enough to cause a stir. It can be silently rejected. With noise, it's harder to reject.

[Hidden]

It is reassuring to see that people are open to exploring rT3 and its significance.

I have signed as I don’t see why not, nothing ventured, nothing gained 🤷‍♀️

thyroidpatients.ca/2019/11/...

paulrobinsonthyroid.com/rev...

[helvella]

The wording is:

Petition

Increase funding for thyroid testing on the NHS

I believe that thyroid patients are being failed, and that there is a lack of knowledge on thyroid care in the NHS. Thyroid problems are linked to issues including infertility and miscarriage.

The Government should increase funding for thyroid treatment so the NHS can give patients access to a full thyroid panel, including a test for reverse T3.

Surely started with the best of intentions.

I would prefer to see a full TSH, FT4 and FT3 done every time and leave rT3 to another day. And to include FT4 in the heel test on newborns.

I suggest that directly contacting NICE in order to feed into the existing NG145 guidelines would be a better approach.

nice.org.uk/guidance/NG145

[DippyDame in reply to helvella]

Absolutely agree ....started with the best of intentions .

[Beau55]

I think as many petitions as possible is necessary to get our voices heard. Being proactive is key even if people think it is wishing washy.

I have signed thank you for bringing to our attention Keylo

[DippyDame in reply to Beau55]

I think as many petitions as possible is necessary to get our voices heard.

That would most likely create petition fatigue on the part of the recipients

Quantity does not necessarily mean quality!

[Beau55 in reply to DippyDame]

It’s just my opinion ☺️ perhaps if they were overloaded with it they would finally give it some thought to stop the petitions. Desperate times calls for desperate measures

[DippyDame in reply to Beau55]

Of course, and we are all entitled to hold an opinion.

Mine just happens to be different. 🌻

[Hidden in reply to Beau55]

Yes you’re right Beau55 it’s been decades of carefully crafted, well-thought out, deeply persuasive pleas... and we have made precisely no progress. In fact, things are getting worse as they’re now moving to remove FT4 from standard NHS thyroid panels.

Time to change strategy. Maybe we just bury them in the paperwork of thyroid petitions! 😂

[Keylo in reply to Hidden]

😂😂 My point is that small steps lead to big steps. Every noise counts, even the tiniest one like "wishy -washy". I don't know how to create a new petition with an accurate and professional design. I found this link on Thyroid UK website and I know I wish to change the thyroid care. So why not to sign it? I think even a little noise counts to make people think.

[Hidden in reply to Keylo]

I’m with you! Nothing lost by signing it 🤷‍♀️ sorry the reception has been a little dour. Maybe try some FB forums? X

[Zephyrbear in reply to DippyDame]

And the participants, probably…

[Alanna012]

Signed

[BenHall1]

Just to clarify for me if you can. Are you talking about NHS Guidelines as per NHS Website or are we talking about NICE Guidelines as per their website ( if any exist).

[helvella in reply to BenHall1]

NICE guidelines linked in my earlier reply.

There are also Clinical Knowledge Summaries on the NICE website. And various other documents across the NHS websites from the nations down to ICS/ICB level and even some individual surgeries/hospital clinics.

[Keylo in reply to BenHall1]

I am talking about the NICE guidelines. It should be revised. There are patients to whom this guideline does not apply. So they are outside the guidelines and have difficulties like they don't matter. In my experience, thyroid specialists seem to ignore many facts that are already known in other NICE guidelines for other symptoms (if you look at the NICE guidelines for high cholesterol for example, it says hypothyroidism may be one of the causes. But thyroid specialists don't seem to know that) and then facts that are already being adapted in many countries as science advances and trial evidence.

[Ellie-Louise]

Signed.

(38 so far)

[PRJ20 in reply to Ellie-Louise]

Good grief - only 38 so far! 😳 Well, I'm sorry to say, that's going nowhere (particularly fast) no matter how well-intentioned or valid the arguments might be. 😶 Only the most powerful and expertly crafted petitions gather enough signatures to even make it to be 'debated' and, even then, have to go through a rigorous process before (if) anything changes.

[Ellie-Louise in reply to PRJ20]

Tiny steps lead to bigger strides.

Thing is, if nobody does anything about what they sit and complain about how can they expect anything to change?

[PRJ20 in reply to Ellie-Louise]

I agree in the main with what you've said Ellie-Louise but (and it's a big BUT), in my experience, having been involved with two of the major campaign organisations (Brake & RoadPeace, with the latter being not only a National Organisation but, an International one, too) for changes in the law relating to bad driving, deaths & serious injuries on the roads as a result since I lost my daughter to bad driving 16 years ago, even sustained, persistent campaigning from very powerful voices and with no end of various petitions, etc., falls on deaf ears and/or very little changes (that makes a real, beneficial difference, anyway).

This is particularly so once politicians get involved (particularly or specifically this shower that have been ruling the roost for the last 13 years), which they obviously have to for a petition to be debated!So, again, I reiterate what I said above & defer to what helvella has said.

Also, I'm the last person to do nothing and/whilst I "sit and complain": I've literally signed hundreds of petitions in my lifetime up to now on various issues I'm passionate about and affect myself, as well as others; have stood on picket lines and been on protest marches in my younger days, as well as always having actively supported many causes in other ways over the years and still do; and also instigated contacting my local Police Force Collision Reduction Officer after my daughter was killed, which led to my doing a Road Safety video with them (remains on their website to this day, as well as on You Tube) & being involved in helping them launch that in a campaign against bad driving. Oh yes! I also took an IAM (Institute of Advanced Motoring) course - 'Skills for Life' - after my daughter was killed crossing the road on a designated pedestrian (Pelican/light controlled) crossing, even though I wasn't involved (tragically, I wasn't even with her 😢) because, I realised that no matter how 'good' a driver I was (or thought I was), everyone's standards/skills can slip and need refreshing and honing and it is my responsibility to ensure I maintain safe driving standards.

So, again, I reserve the right to my own opinion on this.

[Keylo in reply to Ellie-Louise]

*If nobody does anything about what they sit and complain about how can they expect anything to change?"

I really like this statement. I don't want to give up and just complain.

[DippyDame in reply to Keylo]

People are doing something....there have already been huge petitions to both Westminster and Holyrood regarding thyroid disease.

Example...

thyroiduk.org/about-thyroid...

[Keylo in reply to DippyDame]

Thanks for the link. I saw a campaign about prescribing T3. I haven't seen any campaign out there to revise the thyroid NICE guidelines. Has this been discussed yet? Because prescribing T3 is not enough if, for example, the NICE guidelines do not cover all cases of people with thyroid problems, such as the diagnosis process or symptoms.

[TaraJR]

Petitions rarely work, sadly. You need over 100,000 signatures to have it debated.

ITT Improve Thyroid Treatment Facebook Group got 37,000 in a few months, but it was closed when discussions were had with other bodies. That's the highest number I can recall on a petition.

ITT still campaigns in conjunction with Thyroid UK and The Thyroid Trust and Thyroid Support Group Norfolk. Sometimes other groups join us. This way we've reached NHS England and The Lords. Please please join us to make an even larger group fighting this poor diagnosis and treatment in UK

[Sneedle in reply to TaraJR]

Could I ask what the outcome was with NHS England and The Lords? And what is the approach currently (of the groups)?

I'm interested to know where, if anywhere, pressure can be applied.

NICE, as suggested by Helvella?

[TaraJR in reply to Sneedle]

We are in continuing dialogue with NHSE and The Lords. We have so far got T3 into several debates. And parliamentary statements have been issued saying T3 should be given as second line treatment to patients if T4 doesn't work.

ITT group has details all national guidance and parliamentary statements for people to use.

As a joint collaboration of groups, we had long discussions with NHSE last year on T3. They seemed to listen, although when they issued their draft revised guidance it was awful. We replied in very strong terms. We still await their final new guidance.

I think NICE will onlt review their guideline of new research come to light. Unfortunately up to now that has meant RCTs, but NICE is starting to accept that patient lived experience should be included too.

[Sneedle in reply to TaraJR]

Thank you I'm going away to chew as it's new to me (despite being a sufferer for 18 years). 👍

[Keylo in reply to TaraJR]

I think the more people raise their voices, the more noise there will be about thyroid problems, then there will be more acceptance and change in the NHS. Many people do not know about the variety of thyroid problems because they have never heard of it and have no experience. That's why I think that even a small step can make a difference.

[Pandora70]

signed!