Dr Pete Taylor’s Fund Thyroid Research Petition 📣🔔🔊💬

📣 Are you on Threads? Or Mastodon? Or Tribal? Or facebook? Bluesky Social? Or Diaspora? Or Counter.Social? Or Reddit? Or Tik Tok? Or Instagram? Or any other “social” site where information about this petition can be posted?

📣 Can you add a note to emails you send?

📣 Do you have your own blog or website where you can add a plug for this petition?

📣 Obviously, don’t become a pain by excessive repetition. But bear in mind that right here we have had at least three posts within the first day! So, within the limits of tolerability, do repeat post – and extend those repeats over the six months that the petition will run.

📣 Quote from existing posts. Or make up your own wording.

Dr Pete Taylor's original post on twitter:

❝Pete Taylor @DrPeteTaylor

Lovely people please could you sign this petition and share widely. Thyroid disease does not get sufficient funding despite being very common, this may help address this -Thx❞

Wording of actual petition on government petition site:

❝Give more funding for thyroid research and patients after price hike

A fine of £84 million has been levied for the price hike in liothyronine (T3), which had a significant impact on patients. We request that an amount equivalent to a proportion of the fine (1-5%) is made available for thyroid research and support for patients with hypothyroidism.

Hypothyroidism is one of the commonest conditions in the UK. However 10-15% of patients despite levothyroxine treatment have persistent ill health, although some find their symptoms improve dramatically with liothyronine (another thyroid hormone). Despite being a common problem hypothyroidism has not attracted research funding and there have been no new treatments in decades. More funding for research and patient support might revolutionise the treatment and lives of many patients.❞

Parliamentary petition for more thyroid research funding

https://healthunlocked.com/thyroiduk/posts/149940446/parliamentary-petition-for-more-thyroid-research-funding

Please sign this petition!

https://healthunlocked.com/thyroiduk/posts/149938874/please-sign-this-petition

Give more funding for thyroid research and patients after price hike

https://healthunlocked.com/thyroiduk/posts/149938613/give-more-funding-for-thyroid-research-and-patients-after-price-hike

This is a direct link to the petition:

https://petition.parliament.uk/petitions/642233

If you find anything incorrect, misleading, typos, links that don’t work, etc., please let me know. Go to my profile and use the contact details there:

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The Micawber approach to thyroid hormone doses

Charles Dickens, Micawber and thyroid dosing

Mr Micawber's famous, and oft-quoted, recipe for happiness:

"Annual income twenty pounds, annual expenditure nineteen [pounds] nineteen [shillings] and six [pence], result happiness. Annual income twenty pounds, annual expenditure twenty pounds ought and six, result misery."

If you take 100 micrograms of levothyroxine a day and your body expends 99 micrograms, result happiness. Take 100 micrograms of levothyroxine a day, body expends 101 micrograms, result misery.

Every extra day leaves you further behind, until eventually you reach a new but definitely suboptimal steady state. A tiny, tiny amount more than you need is of little or no consequence.

For example, if you were on 125 micrograms and needed a small dose reduction, say to 112, but you were actually reduced to 100, you would be falling behind by 12 micrograms a day. In one week, you are down by 84 micrograms. Only when your body reduces its "consumption" of levothyroxine to 100 can the new steady state occur - and you will be well down by then.

(Be careful not to interpret this as an invitation to take more and more levothyroxine, that is taking the analogy too far.)

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Private Prescription Charges

If you ever get issued with a private prescription, Stop! Consider how much it will cost to get the item dispensed

First, is the item actually prescription-only? If it is available over-the-counter, that will almost certainly be the cheapest option.

What is the actual price of the medicine?

The pharmacy will likely have a range of possible suppliers with a range of prices. Then discounts depending on all sorts of factors. That makes it very difficult to get the exact price. But you can often get an idea from the British National Formulary.

https://bnf.nice.org.uk/

NHS pay the pharmacy through an agreed reimbursement mechanism based on the NHS Drug Tariff.

NHS also pays a dispensing fee (something like 245.0 through 286.8 per item depending on prescription).

NHS Drug Tariff prices for amitriptyline range from 75 through 98 pence per 28 (depending on dosage). Actually very similar prices to most levothyroxine tablets.

A pharmacy might charge £9.65 might is simply a base price equal to NHS prescription charge.

For example:

For private prescriptions you've obtained from another GP, we have a minimum dispensing charge of £9.65 per item.
https://www.pharmacy2u.co.uk/prescriptions/

I've never seen anything that stops pharmacies charging whatever they want for private prescriptions. But maybe there is some sort of price control mechanism?

Find the cheapest private prescriptions 

While NHS prescription prices are fixed, pharmacies can set their own for private prescriptions. These are given when you want a drug not covered by the NHS in your region, such as Malarone to prevent malaria if you're travelling and some cancer drugs. 

It could be a drug for a lifestyle-enhancing purpose, such as sexual aid Viagra (although this can be on the NHS if your erectile dysfunction's caused by a medical problem, such as diabetes, prostate cancer or a kidney transplant) or anti-baldness drug Propecia. 

Non-NHS doctors can't give NHS prescriptions. So go to one for emergency weekend diagnosis, or because you're a member of a scheme, and you'll get a private prescription.

Always compare prices 

Unlike the world of NHS prescriptions, with private prescriptions it's an open marketplace and pharmacies can set their own prices, meaning costs vary hugely. 

The table below shows how prices can vary for just one item, but it can be an even bigger difference if you ask for the generic version.
https://www.moneysavingexpert.com/family/cheap-prescriptions/

Note: NHS prescription charges only apply in England and even then only if you do not qualify for exemption.

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helvella - Thyroid USP

The Standard

Thyroid USP is, first, a standard. The U.S. Pharmacopeia defines medicine standards for the USA. And some countries follow USP standards, especially when there are few, if any, other standards for something.

The Products

Secondly, Thyroid USP is the substance produced that conforms to the USP standard.

And on the Thyroid UK forum, we do try to use the terms Natural Desiccated Thyroid (NDT) and Desiccated Thyroid Extract (DTE) solely for products which conform to USP. Sometimes this results in admin action to ensure consistency of information.

Products which do not claim to be Thyroid USP tend to be called "thyroid glandulars" as we don't really have any other suitable term.

The current Thyroid USP standard is not readily accessible. Which makes it difficult to say anything definitive. Some of what follows is historic and might no longer be true.

Discussion

Nothing in USP demands that the animal source is porcine. It could be bovine (cattle) or ovine (sheep). But I am not aware of ANY Thyroid USP product which isn't porcine. Though there are at least a few bovine glandular products.

The USP standard was originally devised to try to ensure consistency of the product but the chemical assay techniques were nothing like as refined and capable as those now available. The standard checked the amount of iodine which was bound - and assumed that represented thyroid hormone.

More recently it has been revised to use techniques which specifically check levothyroxine and liothyronine content much more directly.

 Further, in general we rely on the manufacturer's claims. For USA products, we know the FDA is involved. Similarly the relevant agencies for Canada and any EU countries.

The current official Thyroid USP monograph is not readily accessible. The link below claims to be the version from 2007 but this cannot be verified.

http://pharmacopeia.cn/v29240/usp29nf24s0_m83400.html

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MHRA Products Database

 All medicines which are approved in the UK have their documentation posted on the MHRA's products database.

That includes

Summary of Product Characteristics (SPC)

Patient Information Leaflet (PIL)

Public Assessment Reports (PAR)

 https://products.mhra.gov.uk/

(Where the product is available due to approval within the EU, some documents will not be available here.)

It has a search facility but that is very crude and it is difficult to get just want you want. You can include active ingredients, excipients (inactive ingredients), PL numbers, etc. But you can't be clever and search for "levothyroxine that doesn't contain lactose".

It will also list all products which say there are any interactions or warnings about taking while already taking levothyroxine.

Therefore, you would very often want to choose only the Patient Information Leaflet (PIL) documents, and the PL number or active ingredient. Then have to work your way through the documents it finds.

And, if you search for "levothyroxine", you'll probably find all the documents for liothyronine as well - because they include words like "stronger than levothyroxine".

While it is the only complete source of documents, it is tedious to use.

If you find anything incorrect, misleading, typos, links that don’t work, etc., please let me know. Go to my profile and use the contact details there:

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Whole Genome Sequencing

The reading of our individual entire genome is known as Whole Genome Sequencing (WGS).

Having been sequenced, the data then needs to be analysed and viewed for it to have any use.

Several companies offering Whole Genome Sequencing at a range of prices.

Be very aware of exactly what they will sequence (will it include maternal DNA?).

Also, what analysis options they offer. Some make available numerous options but they might charge for each additional analysis they add.

Most make it easy to download your sequencing data, if you wish. However, you have to understand what you can then do with it!

It is also important to understand the legal, ethical and, emotional/psychological issues that this sequencing can cause.

This is a list of companies and links. Nothing here should be taken as making any comment about them, their testing, charging, etc. It is simply a partial list of companies. Some might not even offer direct to customer packages.

Under some circumstances, the UK's NHS will run WGS on individuals.

Dante
https://www.dantelabs.com/

Sequencing
https://sequencing.com/

Nebula
https://nebula.org/whole-genome-sequencing-dna-test/

Illumina
https://www.illumina.com/

Veritas
https://www.veritasgenetics.com/

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Suppressed TSH

The technology that went into producing the TSH test was impressive. They were detecting a truly tiny amount of TSH in a small (but massively larger) amount of blood.

Early TSH tests would be able to detect when TSH was low. They simply were not sensitive enough to identify the differences between the various degrees of "low".

The term "suppressed TSH" has come to mean one of a number of different (and inconsistent) things:

Any value of TSH below the lower reference interval. E.g. on a typical TSH test with an RI of 0.4 to 4.5, any value below 0.4.

Any value of TSH below the lowest measurable TSH on the specific assay used. A TSH test will be reported as something like < 0.01 - meaning lower than 0.01.

An arbitrary value of TSH below lower reference interval and the lowest measurable TSH.

Even if we assume that TSH does indeed drop as thyroid hormone levels rise, there is a problem.

A result that is below measurable TSH does not, cannot, show any difference between someone who has high thyroid hormone levels, but possibly still inside their reference intervals, and someone else who has thyroid hormone levels which are far, far higher - maybe double or more.

Yet many published papers treat all those with suppressed TSH as if they have significantly excess thyroid hormone. This wrongs to those who have acceptable thyroid hormone levels but are pushed to reduce thyroid hormone doses. And it also wrongs to those who really do have high thyroid hormone levels by diluting the pool and under-representing the potential severe symptoms they have or could develop.

If you find anything incorrect, misleading, typos, links that don’t work, etc., please let me know. Go to my profile and use the contact details there:

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Hyperthyroid, over-active, over-medicated, etc.

There is a fundamental problem with the language used for these issues which causes much confusion.

If someone's thyroid gland produces too much thyroid hormone, that person suffers symptoms. There are many symptoms which are widely regarded as being common and are often clear enough to diagnose the person as having too much thyroid hormone.

The term hyperthyroid is likely to be applied to the person.

But does hyperthyroid mean that the person's thyroid is producing too much thyroid hormone? Or that the person is suffering the symptoms of having too much thyroid hormone in their bloodstream and cells? Or does it only apply when both occur together?

Broadly, there are three mechanisms which cause the thyroid to produce too much thyroid hormone.

● Some form of nodule or tumour which escapes control and produces thyroid hormone regardless the level of TSH.

● Or the immune system produces TSH-receptor antibodies which stimulate the thyroid gland regardless TSH level.

● Or the pituitary produces excess TSH.

Two of those don't even imply that the thyroid itself is a cause. And even nodules and tumours are often confined to a very small part of the thyroid gland.

An excess of thyroid hormone medication can produce many of the same symptoms.

Unfortunately, hyperthyroid is used indiscriminately. And rarely is care taken to distinguish between the "hyper" prefix being applied to the thyroid gland itself and the level of thyroid hormone in the blood and body.

And people who are being properly treated, and have acceptable blood thyroid hormone levels, are also termed hyperthyroid. 

Similarly, over-active is also used indiscriminately, being applied to both a thyroid gland that is producing too much thyroid hormone and the reaction of the person's body to having too much thyroid hormone.

In the literature you can find use of the term hyperthyroxinaemia. Which means "too much thyroid hormone in the blood". But it is rarely used - too long, too difficult to spell and pronounce, and can look like nit-picking pedantry.

(To be completist, there are some other rare issues which can cause excess thyroid hormone in the bloodstream. Such as ectopic thyroid tissue or physical damage to the thyroid gland.)

My view:

The language needs to be reviewed. The main reason being to make everything clear and well-defined.

We need words for:

● Too much thyroid hormone in the blood, whatever the cause.

● The thyroid gland producing too much thyroid hormone due to an issue within the thyroid - an autonomous nodule or tumour.

● The thyroid gland producing too much thyroid hormone due to an issue in its stimulation - excess TSH or TSH-receptor stimulation by antibodies.

A few suggestions:

Some sensible, some rather less so.

hyper-TH 

Too much thyroid hormone however caused. With the obvious possibility of being extended to the terms hyper-T4 and hyper-T3, if that is seen to be sensible.

Any form of over-medication by thyroid hormone would fit this definition.

While we would usually establish a hyper-TH state by doing blood tests, it needs to be understood that the words themselves do not define that.

It is hyper-TH which causes the symptoms of Graves disease, or a period of higher thyroid hormone release in Hashimoto's (due to damage to the thyroid), or over-medication, or an autonomous nodule or tumour.

hyper-TH is a state. It is always secondary and would usually need to be qualified as being due to something else.

Rather than being a criticism, that actually helps. It allows the state to be discussed even before the cause has been identified. And that is most particularly helpful when there could be multiple factors.

There is still the issue of those who need unusually high thyroid hormone levels - such as thyroid hormone resistance or impaired sensitivity to thyroid hormones. It isn't hyper-TH if it is what the individual needs.

(Imagine a Graves patient on block-and-replace. The hyper-TH state could be due to the Graves disease being out of control, or the replacement dose of levothyroxine being too high, or both.)

TH-hyper-genesis or TH-hyper-secretion

Where the thyroid gland is creating or releasing an excess of thyroid hormone. This can be split into intrinsic (where the cause is within the thyroid gland) and extrinsic (where the cause is the control mechanisms). Again, allowing T4 and T3 variations, if needed.

(The word hyper-secretion is already widely used in medicine. But a simpler option might be preferable. Quite simply, I have not come up with a better term.) 

This also allows that an individual who has a TH-hyper-secretion issue can, when treated (e.g. by an anti-thyroid medicine), not be hyper-TH.

However, because it defines a process, it is sensible to consider people as having TH-hyper-secretion even while being adequately treated. It means that the person has a problem which, if untreated, results in secreting too much thyroid hormone.

If you are hypothyroid, don't feel left out. The same basic principles apply and the words surrounding that also need to be reviewed.

Other suggestions would be welcome. I'm not a linguist. I'm not a medic. But I have seen an awful lot of confusion due to the current language.

Summary:

Hyper-TH - which includes Hyper-T4 and Hyper-T3, if these have been determined and are relevant. 

TH-hyper-secretion - which includes T4-hyper-secretion and T3-hyper-secretion.

This divides in two depending on whether the causative factors are within the thyroid (intrinsic), or outside (extrinsic).

Intrinsic TH-hyper-secretion (again with T4 and T3 forms, if needed).

Extrinsic TH-hyper-secretion (again with T4 and T3 forms, if needed).

Obviously, it is possible for the TH-hyper-secretion be caused by a combination of intrinsic and extrinsic factors.

My suggestions also avoid focus on low TSH as an indicator of excess thyroid hormone. While it sometimes does help, it also confuses if there is an excess of TSH - as from a TSHoma (a small benign tumour that produces TSH).

Other words may be added in order to further refine the description. Such as autoimmune for Graves disease, benign for non-cancerous tumours, etc.

Other Languages

I'd hope that any future terms are chosen so as to make them more readily translatable than some current words and phrases.

Comments

Please feel free to comment. I'd really like to achieve a reasonable level of consensus. And accuracy. I will be happy to make changes, corrections, improvements as needed.

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Thyroid UK at HealthUnlocked

I have been a member (and moderator) on the Thyroid UK forum on HealthUnlocked for many years.

The forum is focused on the UK but we have members from around the world.

https://healthunlocked.com/thyroiduk

If you find anything incorrect, misleading, typos, links that don’t work, etc., please let me know. Go to my profile and use the contact details there:

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