Letter from Scottish Government: I received a... - Thyroid UK

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Letter from Scottish Government

I received a letter from from the Healthcare Quality and Improvement Directorate Scotland.Basically repeating what the Levothyroxine zealots have been preaching.

T4 is safe and T3 tends to increase atrial fibrillation and produce emboluses.

The combination of T4/T3 is unproven and the potential for harm exists without a robust evidence base on its safety.

NDT didn't even get a mention because it is not available in Scotland.

Obviously the Responding Officer had not taken the trouble to read any of the information provided and simply follows established policies.

Some ( possibly) useful info: NICE intends to develop a guideline on thyroid disease, with publication expected in November 2019.

The Scottish Government would encourage anyone with an interest in thyroid conditions to engage in a guideline development and more information can be found on: nice.org.uk/guidance/indeve...

and one can share opinions through CARE OPINION, which provides an online feedback service that enables people in Scotland to give real-time feedback and engage in constructive dialogue with healthcare service providers about services received.

All NHS Boards subscribe to this and there are over 500 NHS Scotland staff reading and responding to feedback. This can be found at: careopinion.org.uk/.

I have not tried it myself as the letter only arrived this am and I wanted to share this with the Health Unlocked asap.

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Kacee,

It would be interesting to see what evidence Healthcare Quality and Improvement Directorate Scotland has to substantiate their assertion that Levothyroxine is safe. When people have asked for evidence from the BTA it hasn't been forthcoming.

There are long term observational studies into the safety of using Liothyronine monotherapy and in combination with Levothyroxine.

thyroiduk.org.uk/tuk/resear...

ncbi.nlm.nih.gov/pubmed/269...

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The Policy Officer states in the letter:

BTA Position Statement recommends T4 as the treatment which offers a safe approach to the correction of hypothyroidism and concludes, there is not a robust evidence base supporting its (T3) routine use and then mentions the arterial fibrillation etc.

Rather missing the point I think, because there is no medication that could be considered 'safe'.

It is interesting that Levothyroxine is promoted as the 'all singing and dancing' drug to alleviate the symptoms of hypothyroidism and yet, the fact that it can be also responsible for the very symptoms it is meant to relieve, makes no never mind to the medical establishment.

I almost laughed when I read that hypothyroid patienst who continue to experience problems should be referred to an Endocrinologist as set out in the BTA guidance.

The problem is, at least in our corner of Scotland, Endocrinologist are not interested.

A referral to an Endocrinologist in Fife was made by the GP but the Endo refused to arrange an appointment and made a diagnosis of Hashimoto's based on information from a blood test and stated that the results show signs of non-absorption but to carry as usual with T4.

The second referral was to an Endo in Edinburgh who said the test results showed that there was conversion and absorption. The test result supplied to both Endo's were identical and yet, two very different interpretations, but, heaven forbid that one questions their knowledge!

The Secretary of State for Health explicitly states that:

Doctors can use Thyroid Hormones other than Levothyroxine only; that doctors can prescribe unlicensed drugs, that doctors can follow whatever guidelines they wish even if they are from another country

and

the Chief Medical Officer Directorate Pharmacy and Medicines Division states:

The prescribing of T3 continues to be an option for clinicians, based on their clinical expertise, and taking into account the healthcare needs of individual patients.

But, despite such clear statements, treatment other than with T4 only is denied to hypothyroid patients. Pharmaceutical companies who manufacture Levothyroxine must be employing a very successful marketing strategy to convince the BTA, RCP, Health boards and consultants/ doctors to promote the idea that T4 is the one and only drug hypothyroid patients need.

They undoubtedly benefit from the Pharmaceutical companies handouts of money for grants and projects, conference fees and who knows what other freebies and therefore are not interested in upsetting the lucrative Levothyroxine money boat!

Taking into account the number of people suffering from hypothyroidism, T4 only medication provides pharmaceutical companies with an opportunity for making a huge amount of money. Pharmaceutical companies have a lot to lose if doctors stop prescribing T4 only medication.

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Kacee,

It doesn't matter how many 'positions' the BTA, RCP and Health Boards take in favour of Levothyroxine none of them are providing evidence that Levothyroxine is safe and the links I posted earlier do attest to the safety of long term Liothyronine use.

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Exactly ! They are totally ignoring the unpalatable truth that they cannot provide evidence and hide behind mealy mouthed policies and guidelines which are not worth the paper they are written on. If there is nothing to hide why not provide the evidence?

Ah well, once more unto the breach.......

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Kacee,

Too many vested interests with too much face to lose. We're going to have to wait until some dinosaurs die.

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Hi Kacee if that is their attitude then it doesn't bode well for the Thyroid Petition Scotland which is ongoing with Lorraine and MSP Elaine Smith. Jo xx

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Hi Jo

What I would like to see is a debate on TV with doctors who fully support treatment with T3 and/or NDT and patients who have benefited from either one or the other.

On the opposite side doctors etc who maintain that T4 is safe and the 'gold standard' and ask them to produce clear and unambiguous evidence that T4 only is safe and T3 and NDT are dangerous drugs.

I would also like to see hypothyroid patients who are denied alternative treatments and the families/friends of people who felt so abandoned by the NHS that they took their own lives.

Perhaps it would make the 'powers that be' sit up and finally take notice.

The whole situation feels like the Twilight Zone! x

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Now that would be so interesting but I doubt that doctors would be up for that. A health question time as well as a political one I bet would have the highest watching figures. Jo xx

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Hi Jo

I wrote to BBC Panorama and suggested it - they did not even acknowledge the letter.

Getting no response, or mealy mouthed and defensive ones are par for the course. I contacted an Endocrinologist who said she could not make an appointment for NHS patients from a different health board, but could do so in a private capacity. £200+ for a consultation and added cost for tests ( which may or may not be necessary)........

There is nothing like trying to make money out of other people's misery. Maybe I am just cynical.

Kacee x

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Hi Kacee, I think it is just the world we live in now. They are mostly out for as much money as they can get. Not everyone but a lot. Sad. Maybe you are cynical but so am I and with good reason. Take care. Jo xx

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