It seems like we are not alone in having uneduc... - Thyroid UK

Thyroid UK

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It seems like we are not alone in having uneducated doctors !

knitwitty profile image
9 Replies

thyroidpatients.ca/2021/09/...

This paper from Thyroid Patients Canada outlines the situation ins New Zealand where a patient advocacy group have petitioned their Parliament regarding treatment for thyroid conditions, it also highlight the problems people have in other countries ( USA primarily) obtaining T3.

Hope some of you find it interesting.

I also hope the link works as I'm useless when it comes to technology !! :)

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knitwitty profile image
knitwitty
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9 Replies
Shield-Maiden profile image
Shield-Maiden

Hi knitwitty,

I can confirm, unfortunately, it's a global issue...from what I have read, and, experienced myself.

The 'fight' must go on!

Take care,

Shield 👋

helvella profile image
helvellaAdministrator

I am not aware of a single country which practices as we, the patients, wish. Not even close.

shaws profile image
shawsAdministrator in reply tohelvella

Why cannot people with a dysfunctional thyroid gland be treated by professionals who know how to help the recovery and also have the ability to prescribe 'other options' for those who've not been well on leothyroxine alone.

Those doctors who did as they were trained to do, if they didn't follow the 'guidelines' (i.e. Dr Skinner and Dr Peatfield) were pursued as if they were criminals. No patients complained as their health was restored by their knowledge.

Also it is unsurprising for those now diagnosed to find out that the person we expect to be more knowledgeable than our unqualified 'experts' on this forum find out they have no clue of how to return patients to good health and be symptom-free. Any decisions to try to restore health are usually not suggested by the 'experts'.

thyroiduk.org/about-thyroid...

humanbean profile image
humanbean

I see that your link cites a paper by diogenes and his research group :

Midgley, J. E. M., Toft, A. D., Larisch, R., Dietrich, J. W., & Hoermann, R. (2019). Time for a reassessment of the treatment of hypothyroidism. BMC Endocrine Disorders, 19(1), 37. doi.org/10.1186/s12902-019-...

Diogenes is the first-named author. :)

It is interesting to note that in NW England a thyroid SURGEON has been given permission by her CCG and presumably by every other CCG in this region to supply private (ie the patient pays) NDT to certain patients. In my case I qualified to see her by bombarding my own CCG with long, highly detailed letters and emails criticising their refusal to supply me with NHS (ie the NHS pays) NDT. I refused her immediate offer as at the time the cost would have been prohibitive and I had no desire to become part of this conspiracy.My CCG now refuses to even acknowledge or answer my complaints.

EVERY doctor in the UK MUST inform their patients if they believe another medicine than they are getting may improve the patient's health even if it is not licensed (an INSTRUCTION from the GMC*).

Therefore it seems that whoever supplies the CCG's with the local recommendations regarding NDT (In my local instance this being the PanMersey Area Prescribing Committee) are OBLIGED to also recommend that this INSTRUCTION MUST be reflected on those recommendations. ie the recommendation to prohibit NDT will be accompanied by a recommendation to take some!!!! - A perfect hypocritical action!!!

I am awaiting replies from the GMC and my local MP as to whether they think legal action would be successful, also whether my 8 years of bad health whilst on Levothyroxine monotherapy could produce some compensation and even a reminder of this instruction to each and every doctor that is registered with the GMC.

I encourage every patient who has suffered like me from the downright ignorance and stupidity of their doctors and the NHS to put as much effort as they can to try to bring an end to this downright nonsense; an article in the national press or even the Lancet is worth 1,000 complaints to individuals.

* I refer you to the INSTRUCTION in the GMC's booklet:

> "Consent - patients and doctors making decisions together";

>

> part 2 "making decisions about investigations and treatment, Sharing information and discussing treatment options" states:

>

> "(9) You MUST give patients the information they want or need about:

>

> (l) any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer."

TaraJR profile image
TaraJR in reply to

Hidden do you have a link for this GMC info please?

in reply toTaraJR

The details are at the end of the post. A full link is gmc-uk.org/-/media/document...

I've not looked this up for some time and it is news to me that the information has been updated.

New link is gmc-uk.org/-/media/document...

The details seem to have been expanded but it follows the same rule as the previous document, that patients must be fully informed of all options available.

TaraJR profile image
TaraJR in reply to

Many thanks :-)

knitwitty profile image
knitwitty

The whole situation stinks to high heaven, there needs to be complete overhaul in the way medics are trained and patients are treated in the UK, and judging from the comments and the article a few other places too.

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