Reply from Jeremy Hunt (well his minion)

[marigold22]

Following my post yesterday - Dept. of Health Reply re. T3 , I have now received a reply from Jeremy Hunt's office. Yet more waffle

Dear Ms ..............

Thank you for your correspondence of 25 April to Jeremy Hunt about liothyronine. I have been asked to reply.

I was sorry to read of your ill health and I appreciate your concerns about access to the most effective treatments.

Best practice on the identification and management of hypothyroidism has been provided in the Royal College of Physicians’ guidance ‘The diagnosis and management of primary hypothyroidism’. This document was developed on behalf of organisations such as the British Thyroid Association, British Thyroid Foundation and Society for Endocrinology, and is endorsed by the Royal College of General Practitioners.

The guidance states that overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism. This is usually prescribed as levothyroxine tablets. The guidance does not recommend prescribing additional T3 hormone (liothyronine) in any presently available form. However, this does not prevent clinicians considering other forms of thyroid hormone replacement if appropriate.

In addition, NHS England is leading a review of low-value prescription items and introducing new guidance for clinical commissioning groups, with a view to substantially saving NHS expenditure in this area. This will identify areas of prescribing that are of low clinical value or are available over-the-counter, often at a lower price for minor conditions such as indigestion, travel sickness, coughs and upset stomachs.

In developing the guidance, NHS England will seek the views of patient groups, clinicians, commissioners and providers across the NHS.

Further information is available on the NHS England website at england.nhs.uk by searching for ‘guidance on low value prescription items’.

More generally, decisions about what medicines to prescribe are made by the doctor or healthcare professional responsible for that part of the patient’s care. Prescribers are accountable for their prescribing decisions both professionally and to their service commissioners.

With regard to medicines prices, the Department is aware that there have been a number of increases in the prices of certain medicines, including thyroid medication. These include instances where a product previously marketed as a brand has been subsequently marketed as generic and an increase in price has been applied in view of the lack of a competitive market for that product.

Any concerns about possible anti-competitive behaviour by pharmaceutical companies should always be reported to the Competition and Markets Authority. The Authority was asked to look urgently at the evidence uncovered by ‘The Times’ as part of its investigations into excessive drugs pricing.

There are systems in place to ensure that the NHS obtains the best value possible from the purchasing of medicines. There are voluntary and statutory schemes in place to consider the prices of branded and generic medicines rather than consider each product individually.

The Department also has legislative provisions to allow it to intervene with regard to the prices of medicines. However, any investigation would require a high-level and detailed knowledge of the company’s business to be able to make a judgement as to whether a particular price increase was justified.

Due to the forthcoming General Election, the Department cannot comment further on this matter. The costs of medicines in the future will be a matter for the incoming Government.

I am sorry I cannot be more helpful.

Yours sincerely,

Jane Spencer

Ministerial Correspondence and Public Enquiries

Department of Health

[LouiseRoberts]

It would appear, sadly and outrageously that they have been provided with a standard response to use.

healthunlocked.com/thyroidu...

[shaws Administrator]

I really hate the following phrase but it is to be accepted as we've known it all along that the priority isn't the patient:

The guidance states that overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism. This is usually prescribed as levothyroxine tablets. However, this does not prevent clinicians considering other forms of thyroid hormone replacement if appropriate.

The following cruel statement says it all i.e.'we don't give a damn how you feel on levo - you will not get T3':-

"The guidance does not recommend prescribing additional T3 hormone (liothyronine) in any presently available form"

The statement "However, this does not prevent clinicians considering other forms of thyroid hormone replacement if appropriate".

So, if we have the money to go private to a doctor he/she can prescribe NDT???:-

Where has the 'vocation' gone i.e. 'to heal where possible' - to be replaced with guidelines alone regardless of a pleading patient who is in incredible pain mental/physical.

[Musicmonkey]

Oh dear marigold22 😔 Not at all helpful. Even the investigation into the price of T3 has been put on the back burner.

[Rapunzel]

Disgraceful. I believe these are called standard paragraphs. One points and clicks on the appropriate phrases et voila a letter appears. Shoddy. Top marks for trying, marigold but you've had the same response I did. I had a morning of Fs and blinds and shredded it, spitting and fizzing

[shaws Administrator]

She also takes Natural Dessicated Thyroid Hormones - not levothyroxine,

[Marz]

No it started long before that ....

[Rapunzel]

Well, fortunately, Hidden no-one from the Dept of Health was listening or their ears may have fallen off and some of the women may have blushed. If you were playing swear bingo with me as the caller, you'd soon have a full house; a consequence of working with mostly potty mouthed men all my working life and giving at least as good as I got. Love a bit of well aimed vituperation, to this day

Is that what you meant?No? I sent Jeremy Hunt ( now he's keeping a low profile at the moment, don't you think? ) and my MP pretty much my keep the purple flag flying healthunlocked.com/thyroidu... along with the NHSCC. My little MP ( he really is a pocket poppet ) responded but was perfectly sweet and I almost forgave him his spiel because he'd clearly thought about it. I have heard nada from the NHSCC

[Snoddyoddbod]

Putting it very politely as some one did the other day what a load a bow larks!!!!!!!!!!!

They moan about the cost of obesity on the NHS but those of us who cannot convert who have pout weight on are now one of their obese problems.

Wanting to have their cake and eat it springs to mind!!!!

[Dodds]

Maybe email her but not to her private account

[Zephyrbear]

Why do they always take the word of these beancounters and people like Weetman?

Why has nobody contacted me on how the addition of T3 to their abysmal standard T4 (which had kept me ill for over 7 years) affected me personally?

Why don't they ever ask the patients at the end of their 'doctor knows best' attitude???

T3 revolutionised my life! It got rid of the zombie-esque brain fog my brain had fallen into... suddenly I could think clearly again. The all-encompassing depression and feelings of 'nothingness' lifted and I could take part in life again.

I will never give it up and go back to those dark days when I was being kept compliant and subdued by a medical profession who'd rather deal with a bunch of automatons than real patients.

They make such a big deal out of 'consulting with the patient and listening to their opinions' but the stark reality is that they want to do no such thing!

This whole process over T3, which cannot be lumped in with things like paracetamol and suncream (which I fully agree should never be prescribed), because it is NOT available over the counter in this country, should be directed by the patients it affects directly as well as the medical profession.

Once they can do that I might accept their findings, but while patients are being ignored I will feel free to do likewise!

[Bijourain]

I suspect most people are like me. I didn't even know NDT or t3 existed until about two months ago. I've just added t3, I'm on day five and already the ache in my arms isn't as painful. It seems as though the government is taking guidance on how to treat thyroid patients from the British Thyroid Foundation, so to change practice, it's these professional's who we need to tackle to change their attitude towards us.

[janveron1]

This is not a political issue really. Note who is advising the people who know nothing about the issue. It's the supposed experts in RCP, British Thyroid groups etc. I have always been puzzled about their apparent lack of knowledge. Trouble is that they have more influence than any of us.

I am seeing my endo soon and will ask him!!!!

janveron