Sense About Science and Thyroid Disease

[Dany555]

I find it interesting that your organisations have teamed up with Sense About Science. Sense About Science’s Ask For Evidence campaign suggests that sometimes evidence in healthcare can be presented in biased ways.

Do you think that endocrinologists should have any responsibility or obligation to present information about thyroid disease and its treatments to GPs and patients, in an objective and transparent manner? As it stands, your organisations do not supply references to evidence many of the points in your (2011) statement and on the SfE's patient information website.


Example 1
“the inclusion of T3 in the treatment of hypothyroidism should be reserved for use by accredited endocrinologists in individual patients.” (2011)

Are there any published, peer-reviewed RCTs that directly compare clinical outcomes for patients treated with T3 + T4 combination treatments in the following treatment groups: accredited endocrinologists versus doctors who are not accredited endocrinologists?

How do we as patients know that the above assertion doesn’t just arise from professional protectionism or territorialism?

Where the level of evidence your organisations have for any given assertion is G.O.B.S.A.T. then would it not be more transparent to make it abundantly clear that your organisations’ assertions are based solely on the opinions of a select (self-selecting? Voted for? Representative?) committee and that there is a lack of any good quality evidence? That way GPs and patients can give appropriate weighting to those assertions.


Example 2
“We do not recommend the prescribing of additional tri-iodothyronine (T3) in any presently available formulation, including Armour Thyroid, as it is inconsistent with normal physiology…”(2011)

The human thyroid gland produces mostly T4 and a very small amount of T3.

Unless the inhabitants of Britain have been shown to have uniquely evolved thyroid glands that produce only T4 (is there any evidence for this?), all of the available replacement treatments as currently formulated (T3+T4, Armour or Levothyroxine-only) are ‘inconsistent with normal physiology’.

Why then do your organisations highlight this problem when disparaging combination T3 + T4 treatments but fail to mention it when praising T4-only treatment?

A biased presentation of information may (inadvertently I’m sure) be misleading to patients, who may think that they are getting a replacement hormone in T4-only treatment that is not ‘inconsistent with normal physiology’.

Would it not be more accurate and transparent to say: “None of the currently available treatments are consistent with ‘normal physiology’ however we promote the use of Levothyroxine for all patients based only on the limited types of evidence we are willing to consider etc.”?

These are just two examples, but there are so many more in your organisations’ publications. As a patient I would like to be presented with objective (and not agenda-driven) information so that I can give informed consent. GPs are busy and can’t be expected to chase up references to scrutinize the legitimacy of your assertions.

As promoters of the Ask For Evidence campaign, do you think that your endocrine organisations might strive to set a good example and offer a firm commitment to providing transparent, open, referenced, objective and accountable information to patients and GPs?

[talkhealth]

Hello Dany555 - thank you for posting in our forum.

However, this forum is not intended for discussion about organisations or guidelines. It is a place where people living with thyroid issues can ask our experts personal medical questions and seek help/guidance.

I do hope you appreciate the very nature of this clinic. Therefore, please do ask any specific/personal thyroid questions you may have.

[desperatedan]

That's a shame. These are the questions I would like to see answered

[Kiwi]

As a hypothyroid patient I looked at the BTA website, went to a meeting and found the information given very rigid. T4 only, no information about other medication available (in the UK, on the NHS). T4 alone doesn't work for everybody (for accepted medical reasons but won't make a list here) but there is no information given, to us patients, on what our options are if it doesn't work for us. If the BTA wasn't so rigid and (in my opinion) better served patients other thyroid support groups and charities who do give out more information would not have been created.

I appreciate this forum is for patients and helping their problems.

[talkhealth]

Hello Kiwi

Thank you for your post.

Our experts will answer any medical questions you may have but are not here to comment on your opinions about GP's, Endocrinologists, Sense about Science or the BTA. I'm sure you appreciate our experts are giving their time to answer specific medical questions only.

[hellohelenhere]

Dany555, that's such an excellent post that I have kept a copy for reference, I hope you don't mind! You are quite right, and we should make good use of the Ask for Evidence campaign. It's an outrage, really, that the status quo is based on assumptions and custom rather than intelligent analysis of the problem. Dr Beastall defended the high TSH cutoff by saying that it would be bad medicine to treat people for conditions they don't have - but surely it's equally bad medicine not to treat patients for conditions they do have?

[Dany555]

@talkhealth

Thanks for your reply. I will try to personalise any future questions and I am happy to abide by the clinic rules.

However I am just wondering if you could clarify the ways in which Sense About Science is involved in this forum. I am a little confused about why Sense About Science's "Ask For Evidence" campaign is mentioned on the front page of the thyroid clinic.

Thanks in advance.

Dany555