Grassroots Campaign Anyone? For Better Thyroid Treatment

It crossed my mind that it would be handy if a few of the most useful articles could be permanently attached to a pinned post [see right of web page>] that newcomers could be directed to for them to print off. Then I thought, they could give this same information to their GP and Endo.

Better still, what if we ALL did this?

So many people are ending up under medicated but still symptomatic as dictated by the TSH test or T3 not being made available to them or even withdrawn.

For example, we could have an article on:

1. The unreliability of the TSH test; the TSH test leads to dose reduction, whereas your correct dose is that which alleviates your symptoms and is not dependant on TSH numbers; that suppressed TSH in itself does not lead to atrial fibrillation or osteoporosis, as long as FT3 is in range - which they don't test; the FT3 / FT4 test is better indicator of thyroid levels.

2. T3 - the need for; not prescribing it / withdrawal of.

3. Perhaps a short scientific article...with lots of references.

4. A short cover letter – designed so that people can easily adapt it to suit their particular needs.

Possibly this too? Dr. Lowe used this tick-box form in his practice to document symptoms and provide a written record. web.archive.org/web/2005051...

"... when used properly, becomes objective documentation that a patient has not experienced symptoms of thyroid hormone overstimulation.... And this is true despite dosage adjustments based on the patient's clinical responses without regard for his/her TSH level. Having a series of completed forms in a patient's file is one of the best ways of documenting that the patient's thyroid hormone therapy has been harmless...This may provide your doctor with some peace of mind...It may do so by calming his fear of retaliation for failing to comply with the politically and financially motivated standard of repeatedly ordering TSH tests."

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For the first one, I'd propose something like

Rethinking the TSH Test: An Interview with Dr David Derry, M.D., Ph.D. The History of Thyroid Testing, Why the TSH Test Needs to Be Abandoned, and the Return to Symptoms-Based Thyroid Diagnosis and Treatment thyroid-info.com/articles/d...

I like this [minus a couple of paragraphs] interesting, readable, short; follows a human narrative and touches on the patient/doctor partnership. But he lost his licence, which would make it easy for them to dismiss anything written by him.

Then again, so what?

Also, Dr John Midgely's Report [Scottish Parliament] with his CV as an intro [link anyone?] and thyroiduk.org.uk/tuk/confer...

As a plus, he is Diogenes [I didn't know that].

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This site has an excellent resource of very knowledgeable, well read and articulate members, who'll have some good ideas – as well as someone who can write up the cover letter.

The trick is to choose the right article/s that hit the right nerve so there's more chance they'll be read. Something concise and readable, rather than 20 pages long, overly scientific, or an emotional diatribe against the established view.

Basically, we are doing nothing or we are leaving it up to a handful of dedicated people to do an impossible job of trying to change current thyroid treatment, let alone recent changes to T3 guidelines, on our behalf. Yet this site has hundreds and hundreds of members, who could give these print-offs to their GP/GPs and Endo.

Is it 1 in 50 people have some sort of thyroid disorder? Your one GP / or surgery will have hundreds of other thyroid patients, if this could convince just one GP to question the established view, start treating symptoms and not the TSH test, plus see improvements in your health, they might see that this new protocol might also benefit other thyroid patients at their surgery.

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The print-offs should be given to ALL your GPs and Endos as a matter of course: the open-minded ones, the conformist ones, and the most important - the ones who are already on board. These are the ones, who are better placed to change the minds of the impenetrable brick-wall ones. GPs, Endos, they all talk to eachother, even if they disagree with one another.

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What about having a slogan / letterhead - 'Campaign for Better Thyroid Treatment' or something.

Something to get stuck in their head. It would give a message we are many and organised..."eek, the patients are revolting!"

It would be easy to set up:

1. Decide how many articles / which articles

2. Write a cover letter

3. Post them up in the Pinned Posts

4. Direct members new and old to the pinned post to print off for their GPs / Endo.

Bottom Line

There has never been any study or trial that actually proves that the TSH test is the be all and end all of thyroid tests - it's just an opinion.

We could be the first study that proves otherwise, and the more people that get involved the better. We have nothing to lose.

If you really do not believe in the THS test, then don't comply with it and make it known why you don't comply with it. Refuse to alter your dose based on the test, especially without an FT3/FT4 test. If your GP is difficult or unpleasant then change to another one. They are not going to withdraw your Levothyroxine.

Equally re: T3 therapy - say you will, or are already buying it cheaply from abroad [which exposes the extortionate price the NHS pay for Liothyronine] and are doing well on it, if they refuse to test FT3 / FT4 or to monitor you then say you will work out your dose yourself based on your clinical symptoms and how you feel.

If we really believe in the doctors who have spent a lifetime sticking their necks out for us; those who have lost their licences, their jobs, their reputations, their health, then it's up to us to act on and pass on their information, otherwise we've all effectively hung them out to dry just like the establishment that vilifies them.

When they see the improvements in your health and that you have come to no harm...hopefully! Then you, and the lowes, the skinners, the derrys and the peatfields will be vindicated.

5 Replies

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  • The powers that be refuse to listen as they have vested interests.

  • Glynisrose Maybe, but we know this, and maybe it is because they cannot hear us, we are not sticking together and not shouting loud enough. juniperex is right. Maybe it is time we all stood up for ourselves and make ourselves heard.

    This has to be a co-ordinated campaign and I wholeheartedly agree with the paragraph regarding those brave and caring medics who have put their livelihoods on the line in trying to help us all. And for the sake of the organisers and staff at TUK who are working hard to get things improved for us all.

    I am aware that TUK is in the process of organising something but these ideas are very relevant and should be considered.

    I thinks this forum needs some re-occurring post, like juniperex's as they are getting lost in amongst others and are not being seen by enough members.

    May I suggest, juniperex, that you repost it, a few times if necessary, or contact lynmynott to see what they are planning and if your ideas or at least some of them might be relevant?

  • UrsaP,

    Thanks for your reply.

    Do you want to repost the post? You're very welcome to. Perhaps ask for people to suggest which articles.

    Having written such a long-winded campaign outline I was counting on others to run with it / contribute.

    I have work and deadlines, and I'm away off and on. I find it so much quicker and easier to talk, always, whereas composing posts and replies etc takes me ages.

    This could be set up as a pinned post within a week or so if other people were able to suggest / source a few published articles, and slightly edit / cut them if need be.

    And someone to draft a short cover letter/s.

    You need to decide the 'tone' of the articles chosen, as well as that of the cover letter.

    And decide on a name for the campaign as a heading to all letters / any correspondence "Campaign for Better Thyroid Treatment" or something.

    But I've noticed when other people have suggested some sort of action, albeit vague and unspecified, it's still completely ignored. So I've a feeling there won't be much interest.

  • I'm fairly new to this juniperex and not sure how to repost... I'm not going too be at home the next few days either. Will see if I can work it out. You might be best to ask one of the Administrators? Might be quicker!

    I know what you mean, I feel like there just isn't enough feedback on posts/comments. But a few people cannot do it all - but we have to find a way.

  • Ditto.

    I'll repost it tomorrow sometime.

    If you need to talk in detail about any of this, you can always pm me your number and I'll phone, otherwise I'll look out for your posts.

    over and out.

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