T3 & CCG's LET'S ALL MOVE HERE!! also note that you can get it to improve depression, CCG's provide guidance it's not law nor standardised

[juliat]

google.co.uk/url?sa=t&rct=j...

[NorfolkRose]

Thanks for the pdf. Looks promising.

[helvella Administrator Thyroid UK]

juliat ,

The PDF you linked to is absolutely dreadful. It contains the following egregious errors:

(desiccated thyroid or thyroid extract which is contains both levothyroxine and liothyronine according to the United States Pharmacopoeia (USP))

This is ungrammatical and, as written, makes no sense. It might be fairly clear how it should read, but this is a document that has apparently had official sign-off by the East Kent Prescribing Group. Does this mean that not one of the those responsible is capable of reading what is in front of their eyes?

Also, for a formal document with a list of references, why do they not reference the appropriate USP document(s)?

Drug tariff costs (April 2015) for liothyronine 20microgram tablets were £152 for 28 x20mg tablets. BNF advises adult dose of 10-60mg daily.

Why quote "20microgram tablets" and then a cost for "20mg tablets"? And go on to quote BNF "BNF advises adult dose of 10-60mg daily." Do they not know the difference between a milligram and a microgram? Quite obviously they do not or they surely would have corrected this mistake.

This is should then be switched over to Levothyroxine.

Another ungrammatical splurge of words masquerading as a sentence..

Most (80%) physiological liothyronine, (tri-iodothyronine, or T3),

"Liothyronine" is reserved exclusively for triiodthyronine (T3) as a medicine. It is never used for triiodthyronine produced within the body, as in this sentence. In someone taking liothyronine, just possibly there could be a reference to liothyronine with respect to what the person has taken and absorbed but that is categorically not the sense in this sentence. It is one of the peculiarities of the language surrounding thyroid medicine.

Also to note is the uncontrollable cost of unlicensed products.

That the price of MercuryPharma liothyronine has risen around twenty-fold over the past very few years shows their utter inability to control the cost of the sole licensed product. At least with imported products they could stand a chance of purchasing from the least expensive source. As it is, all they can do is pay the exorbitant tariff price.

The above was from a few minutes of reading the document. With more effort and time, I am certain many more issues could and would be identified.

If anyone wishes to use my observations, feel free to do so.

[shaws Administrator in reply to helvella]

Very well stated Helvella.

[shaws Administrator]

There are a few points I don't agree with in this document and they also make the same false statements with regard to NDT.

First Para on page Liothyronine - On the second para it reads:

The RCP does not recommend the prescribing of levothyroxine with additional liothyronine in any form, including Armour® Thyroid (desiccated thyroid or thyroid extract which is contains both levothyroxine and liothyronine according to the United States Pharmacopoeia (USP)); this is inconsistent with normal physiology, has not been unequivocally proven to be of any benefit to patients, and may be harmfuI 

However due to the wide swings in serum triiodothyronine concentrations produced, and the possibility of more pronounced adverse cardiovascular effects, long-term use make it an unsatisfactory option.

Considering I was in and out of the A&E very often when on levo and constant palps and since on T3 only I've had no palpitations whatsoever or seen the inside of a hospital.

Re Dessicated Thyroid Hormones:

Desiccated thyroid extracts

Desiccated thyroid extracts, such as Armour® Thyroid, NP Thyroid and Nature-Thyroid®, are natural

 preparations derived from porcine thyroid glands. One grain of thyroid contains both 38 micrograms  (mcg) levothyroxine and 9mcg liothyronine per 65mg of the labelled amount of thyroid. The amount of thyroid hormone in the thyroid gland can vary from animal to animal; the amount of T4 and T3 is measured in both the raw material and actual tablets. These products are not licensed in the UK and while they are available in the US, they have not been approved by the US FDA as new drugs and have therefore not undergone rigorous clinical trials evaluating safety and efficacy. 

Some patients do request treatment with desiccated thyroid, such as Armour® Thyroid, because they do not feel as well when treated with levothyroxine. However due to the lack of robust good quality evidence supporting the clinical effectiveness of desiccated thyroid the use should not be recommended.

*****

From the first para "they have not been approved by the US FDA as new drugs" (NDT)

I don't see how they can be approved as 'new drugs' because they are not new in any way - have been used successfully for more than 100 years and are therefore known as 'grandfathered'. Thus I feel that " rigorous clinical trials evaluating safety and efficacy" has been carried out by all the patients since 1892 that nothing else is required.

The fact that NDT has been in use and many on this forum have recovered their health I think it's Big Pharma who protests so much as they don't want to lose money. I believe they also pay for the 'Conferences' and pay doctors to prescribe levo only.

 If you aren't given sufficient levo to alleviate all clinical symptoms they prescribe 'other' for the symptoms and thus increasing profits for those that make it.

thyroidscience.com/Criticis...

p.s. by the following statement:-

"The amount of thyroid hormone in the thyroid gland can vary from animal to animal"

So do they mean the tablets are made from an individual thyroid gland?

. 

[helvella Administrator Thyroid UK in reply to shaws]

The FDA required that levothyroxine products were approved as 'new drugs' somewhere around 2000. The reason was that the manufacturers were unable to achieve bio-equivalence between makes nor consistent potency within makes.

The very fact that the FDA have NOT required this of desiccated thyroid products should be taken as a signifier of the issues surrounding levothyroxine.

Our own MHRA decided against formally stating that the UK levothyroxine products require special consideration when switching makes but I suspect at least one person on the group would actually have liked to do so. This was in the paper produced after the Teva debacle.

[shaws Administrator in reply to helvella]

Thanks for that information it is important to know.

[juliat]

Blimey!!!

I thought you'd all pick up on this statement!

which gives a window for obtaining funding. (if you live in this CCG's area - they all seem to have different guidlines)

'Liothyronine may be recommended as a sole agent by an endocrinologist when absorption of levothyroxine sodium is questionable or impairment of peripheral conversion of thyroxine (T4) to triiodothyronine (T3) is suspected2.'

Still I suppose it's another example of professional incompetence and/or ineptitude.

[helvella Administrator Thyroid UK in reply to juliat]

The reference in the paper is to a source that most of cannot access.

However, I have found the AHFS guidelines on Drugs.com and the relevant paragraph reads:

Uses for Liothyronine Sodium

Hypothyroidism

Used orally as replacement or supplemental therapy in congenital or acquired hypothyroidism of any etiology, except transient hypothyroidism during the recovery phase of subacute thyroiditis.a c Specific indications include primary (thyroidal), secondary (pituitary), and tertiary (hypothalamic) hypothyroidism.a c

Generally considered unsatisfactory for long-term use because of potential problems (i.e., wide swings in serum T3 concentrations, possibility of more pronounced adverse cardiovascular effects);a g o however, may be useful when absorption of levothyroxine is questionable, when impairment of peripheral conversion of thyroxine to triiodothyronine is suspected, or in patients allergic to natural thyroid hormone.a b c Levothyroxine is considered drug of choice for replacement therapy.e

For treatment of congenital hypothyroidism (cretinism), levothyroxine is considered drug of choice.a

Used IV for treatment of myxedema coma or precoma.a b c Preferred by some clinicians over levothyroxine when a rapid effect or rapidly reversible effect is desired; however, levothyroxine generally is considered drug of choice for this use.a

drugs.com/monograph/liothyr...

[shaws Administrator]

The Guidelines from the BTA are (taken from the American Thyroid Association) and is the latest published in 2014.:-

british-thyroid-association...

Excerpts:

The Guidelines are available free on the Thyroid website.

"Task force co-chairs J. Jonklaas and A.C. Bianco, with colleagues from the Clinical and Translational Science sub-committees, coauthored the Guidelines on behalf of the American Thyroid Association Task Force on Thyroid Hormone Replacement. The authors reviewed the clinical literature related to three main therapeutic categories: levothyroxine therapy; non-levothyroxine-based thyroid hormone therapies (including thyroid extracts, synthetic combination therapy, triiodothyronine therapy, and compounded thyroid hormones); and use of thyroid hormone analogues.

The task force concluded that levothyroxine should remain the standard of care for treating hypothyroidism, noting that no consistently strong evidence supports the superiority of alternative therapies. They emphasize that the recommendations are intended to guide physicians’ clinical decision-making on thyroid hormone replacement therapy for individual patients.

"

“These very comprehensive guidelines provide a superb overview on the current evidence about treatment modalities for patients with hypothyroidism,” says Peter A. Kopp, MD, Editor-in-Chief of Thyroid and Associate Professor of Medicine, Division of Endocrinology, Metabolism and Molecular Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois. “In addition, the document highlights gaps in our knowledge and indicates which topics are in need of future research, for example the need for long-term outcome clinical trials testing combination therapies and continuing research on thyroid hormone analogs.”

“These ATA guidelines, developed by an expert team, provide useful, up-to-date information on why to treat, including subclinical disease, who to treat, and how to treat hypothyroidism. Information is evidence-based and recommendations are graded. I think they will be used extensively by all clinical endocrinologists, especially by our members,” says Hossein Gharib, MD, President of the ATA, Professor of Medicine, Mayo Clinic College of Medicine, Rochester, Minnesota.

"

(I think I should have put my comment on a post of it's own) 

On another page is this important fact and I believe this statement is wrong, primarily because weight gain/obese/hypothyroidism is common:-

“Because obesity and hypothyroidism are very common, there are many patients who have both conditions,” says Ronald J. Koenig, M.D., Ph.D, Program Committee Co-Chair, and Professor, Department of Internal Medicine, University of Michigan Medical Center, Ann Arbor. “These patients (and sometimes their physicians) often assume the hypothyroidism is causing the obesity even though this may not be the case. This study is important because it shows, unfortunately, that only about half of hypothyroid patients lose weight after the successful treatment of their hypothyroidism. It will be interesting and important to have follow up data to know whether the patients that lose weight are the ones most in need of weight loss, and to know how significantly their weight loss contributed toward achieving a normal body weight.” 

To me, unqualified, and most members who suffer from this condition are well aware that weight gain is one of the commonest complaints and no matter what these patients do, weight rarely comes off quickly. They are told they are obese due to what they eat or eat too much of the wrong food.

All of these experts appear to be completely unaware that it is too low a dose of levothyroxine and/or levothyroxine itself (do Big Pharma fund the Endocrinology Conferences and ? doctors) which can be the culprit and ignore studies which prove that levothyroxine can be the cause of weight gain. Ignore patients.

When a patient is very, very unwell on levo (myself) and doesn't know why, when taking medication, they feel so much worse. It's only by chance when you change to something else and all symptoms relieved that's 'evidence based medicine' not the TSH alone.

Instead of patients being classified as obese (and let them carry on as such) professionals have ignored studies (16 years ago) - Extract:

The "hormone problem" you need to consider is the T4-replacement you’re on. A study published in 2000 showed that weight gain is the usual result of being on T4-replacement therapy.[1] This confirms what hundreds of patients on T4-replacement have told us: they gained weight on T4-replacement and couldn’t lose it, even if they dieted and exercised, and they lost the weight shortly after switching to a slightly TSH-suppressive dose of a T4/T3 product, such as Armour or Thyrolar. These patients weren’t fat and lazy when they were on T4-replacement. Instead, they weren’t breaking down fats fast enough because T4-replacement was ineffective for them. And most likely, that’s exactly why you’ve gained and retained weight.

web.archive.org/web/2010103...

All of these experts knowing full well that some patients gain weight which is impossible to lose still keep them prescribed on levothyroxine only  - and appear incapable and unaware that more serious conditions can arise, particularly heart, diabetes or whatever  and wont even add T3 to raise patients metabolism.

I just do not understand that at all. They do not listen to patients' pleas and distress with all the extra weight they are carrying. The majority  blame the patient - no doubt about that instead of their treatment they are on.

[helvella Administrator Thyroid UK in reply to shaws]

Even more hilariously, when I follow the link in the PDF to:

rcplondon.ac.uk/sites/defau...

I actually get the paper downloaded from Thyroid UK!

thyroiduk.org.uk/tuk/guidel...

Not at all clear why that is happening - I think that the RCP link is dead and, somehow, a search is finding the Thyroid UK copy.

[shaws Administrator in reply to helvella]

It did give me a laugh. As they say 'all around the houses and back again to the 'perfect' website for good information on the thyroid gland