Hansard

The evidence suggests—as do constituents who have spoken to me—that there is, across the board, a fundamental lack of understanding of the impact of the condition on the people who suffer from it, on the part of not just people around the patients but the professionals.

The petition has raised the profile of that cohort of patients who either do not respond to the standard treatment or do not respond to the extent that they feel sufficiently well. The committee said in its report:

“It is important that these patients are believed when they report ongoing symptoms to clinicians.”

That is something to which I will return.

As I said, the condition that we are talking about was explained by one of the petitioners as

“a conversion failure of the inactive T4 thyroid hormone to cross over into the active T3 hormone.”

The petitioner continued:

“That does not happen in the thyroid gland at all. The Royal College of Physicians guidance seems only to cover people who can convert normally, and we agree with it that levothyroxine is the right treatment for those people. We do not convert normally”.—[Official Report, Public Petitions Committee, 5 February 2013; c 1056.]

The British Thyroid Association has acknowledged that some patients continue to experience ill health on standard treatment, and the committee welcomes that as a positive step forward in bringing the issue to the attention of clinicians in mainstream endocrinology.

I have referred to the majority of patients with hypothyroidism being diagnosed and treated successfully. The petition and the committee’s work also focused on diagnosis. A key concern of the petitioners is the recommended method of diagnosing and testing hypothyroid patients who do not respond well to standard treatment. The existing guidance recommends that, if a patient is not satisfied with their response to standard treatment, they

“should be thoroughly evaluated for other potentially modifiable conditions”.

According to the National Institute for Health and Care Excellence and the Royal College of Physicians, the starting point for diagnosing a patient with suspected hypothyroidism is to arrange blood tests for thyroid stimulating hormone, or TSH, and free thyroxine, or FT4. Thyroid UK told the committee:

“Part of the problem is that in some areas only a thyroid stimulating hormone test is done, whereas in others a free T4 test is done as well. It is very rare to get a free T3 test done.”—[Official Report, Public Petitions Committee, 1 October 2013; c 1676.]

The committee considered the consistency of testing practices across Scotland and, in particular, the issue of whether testing for T3 is required. The petitioners were of the view that it should be done as a matter of course. However, the committee heard from medical experts and the president of the British Thyroid Association, who do not currently support that view. The president of the British Thyroid Association said:

“It is very misleading to be thinking about measuring T3. I agree with Dr Toft that the optimal measurement for patients who are taking T4 and who have hypothyroidism should be the TSH and the T4. I do not think that there is a place at the moment for T3 because we do not understand enough about it.”

However, Dr Toft clarified his own view by saying:

“There is no reason why T3 should not, from time to time, be measured in patients who are being treated for an underactive thyroid gland.”—[Official Report, Public Petitions Committee, 1 October 2013; c 1680-1, 1678.]

The reference ranges that are used in some testing add to the potential confusion and the mass of information that patients have to grapple with. In the course of forming a diagnosis, clinicians and laboratory biochemists rely on “typical reference ranges” for “normal” thyroids to interpret the results from blood tests. However, those ranges are only a guide and will often vary according to the laboratories, because different tests or methodologies might be used.

Some respondents were critical of the process by which the reference ranges are developed and their use in diagnosis. Thyroid Patient Advocacy has noted that different ranges are used in other countries, and its view is that the range that is used in the United Kingdom should be reviewed. The Royal College of Physicians noted in its guidance:

“We recognise that different methods used for testing blood can give differing results, and we support the international initiative for greater harmonisation of reference ranges and of the units used in expressing results.”

The committee recommended in its report that

“consideration should be given to moving towards the development of a single, national protocol for testing, along with an accompanying process for issuing consistent advice to primary care practitioners for use when considering and interpreting diagnostic tests for suspected hypothyroidism.”

I intend to offer only a short summary of treatment options, as I am keen to hear from other members about their experiences and possible treatments.

According to the British Thyroid Association, the standard treatment for hypothyroidism is synthetic T4, or levothyroxine. The standard treatment appears to work for most people because they can naturally metabolise T4 into T3, which is the active form of the hormone. However, the lead petitioner argues that some patients are not able to naturally metabolise T4 into T3 and that they continue to experience symptoms despite receiving the standard treatment. The petitioners contend that such patients should have access to alternative treatments such as T3 or natural desiccated thyroid.

The committee recognises the concerns that the petitioner has raised about the supply of T3 and notes that the licensing of medication is reserved but that the Government’s action has included discussing previous supply issues with the UK Department of Health and Social Care to monitor the supply of T3 in the UK.

In relation to the production and costs of T3, the committee understands that the market for that treatment in the UK is relatively small. For the majority of the period in which the petition has been under consideration, there has been only one licensed supplier of T3. However, the committee understands that two further licences were granted in the summer of 2017. Following that development, the Scottish Government told the committee:

“The prices charged by the pharmaceutical companies for generic and branded drugs are generally competitive. However, where excessive costs on drugs are identified it would be for the independent Competition and Markets Authority to take appropriate action against those companies.”

We understand that the CMA is at an advanced stage of an investigation into the production and supply of T3.

Leaving aside the medical facts and the arguments for certain treatments, there is the issue of patients not being believed, which we have touched on before. The Public Petitions Committee considers a great many petitions that are linked to health issues, and a common and worrying theme that too often seems to emerge is that patients are not believed when they report symptoms. It is essential that the Government addresses that general experience and concern. I would be interested in that conversation with clinicians, as we are being told that, when people present with symptoms of whatever their condition is, they are not being believed and are being dismissed. That has compounded problems for people who have particular conditions.

I again thank the clerks, all the committee members and those who gave evidence on what is a complex but, for many people across our communities, a serious issue.

I move,

That the Parliament notes the conclusions in the Public Petitions Committee’s 1st Report, 2018 (Session 5), Report on Petition PE1463: Effective thyroid and adrenal testing, diagnosis and treatment (SP Paper 301).