ATA document on Thyroid Hormone Treatment

[jimh111]

The American Thyroid Association has published a document on thyroid hormone treatment thyroid.org/thyroid-hormone... . They have also invited feedback on this and other documents atassoc.informz.net/z/cjUuc... . I suggest we add our comments as it is a pretty dreadful document. I have submitted the following: -

This document is dreadful, full of inaccuracies. Some examples: -

1. 'Thyroid hormone used in two situations' Ignores central hypothyroidism, subnormal TSH secretion, down-regulated axis, RTH, endocrine disruption and no doubt other possibilities.

2. 'dose adjusted to keep thyroid levels normal' TSH, fT3, fT4 are dependent variables, it may be necessary to have levels that are not 'normal' to achieve clinical euthyroidism as in RTH, central hypothyroidism, TSH with low bioactivity. Have the authors ever studied thyroidology?

3. Desiccated prescription NDT, e.g. Armour. Claims that 'The amounts of both T4 and T3 can vary in every batch of desiccated thyroid' are false, prescription NDT has well controlled hormone content. In recent years there have been many levothyroxine recalls, especially in the USA. Levothyroxine has a very poor absorption profile which can lead to erratic dosing.

4. 'contain hormones and proteins that do not exist in the body outside of the thyroid gland' Same applies to a steak and kidney pie or a natural skinned sausage. What's your point?

5. 'Animal thyroid extract should not be used in pregnancy, as the T3 portion does not reach the developing baby' This is disgraceful scaremongering. I'm aware of studies that appear to show T3 does not cross the placenta. However, NDT has been in use for over a century with no apparent harmful effect on pregnancy or development of the baby. Many women on L-T3 monotherapy have successful pregnancies, in some cases they only achieve pregnancy after switching to L-T3. This enigma should be addressed, in the meantime it is highly unethical to give the impression that NDT, L-T3 / L-T4 combination therapy or L-T3 monotherapy is harmful to pregnancy.

6. The claims that L-T3 has a 'very short life span', 'levels decrease very rapidly in the bloodstream', 'has to be taken several times each day' are an exaggeration with the intention to mislead and scare patients - highly unethical. The half life of 24 hours is not a problem if two or three doses are taken daily, indeed Celi showed that with thrice daily dosing there was no difference between liothyronine monotherapy and levothyroxine academic.oup.com/jcem/artic... . We should note that your authors presumably have no qualms about prescribing carbimazole (half-life 4 to 6 hours). Perhaps someone should explain the difference between pharmacokinetics and pharmacodynamics to your advisors.

7. Combination L-T3 / L-T4 therapy. It is stated combination therapy is 'given' once a day. Most patients I know split their doses. Where is the evidence for once daily dosing?

8. Combination L-T3 / L-T4 therapy. 'patients that do not feel completely normal on T4 alone', this is abusive. Your authors will be well aware that many of these patients have their lives destroyed by inadequate thyroid hormone therapy.

9. Combination L-T3 / L-T4 therapy. 'doses that are closer to the normal human thyroid balance'. Why? See point 1. There are many cases where restoring 'normal' serum hormone levels will be inadequate. Many such patients are excluded from studies because their TFTs are 'normal'.

10. 'Some people with normal thyroid blood tests have symptoms that are similar to symptoms of hypothyroidism'. Such patients probably have impaired deiodinase, particularly D2 which regulates local T3 levels. Restoring normal blood T3 will not restore low intracellular T3 due to impaired D2 activity. Indeed prescribing L-T4 will lower TSH further reducing D2 activity. In cases of RTH or endocrine disruption normal blood hormone levels will be inadequate.

I suggest you delete this document. I am willing to help you produce an evidence based document if you wish.

[tattybogle]

thanks ,,well if they want some feedback i'll go and have read of their 'work' . mind you i don't know the difference between pharmacokinetics/pharmacodynamics yet either ,, so my opinions might be a bit more basic .

are we allowed to give our opinions in 'old fashioned anglo saxon' ? ... i do know some good words in that .

[helvella Administrator Thyroid UK]

It is, as you say, dreadful. Multiply so.

[tattybogle]

i see what you mean .. not great is it. They skilfully avoid any reference to anybody 'feeling better'..... probably don't want us to go getting any 'unrealistic expectations' from our 'normal thyroid treatment'.

[jimh111 in reply to tattybogle]

They restrict diagnosis to ‘abnormal’ blood test results and limit therapy to ‘normal’ hormone levels. This means any investigations have to fit in with their theory that you can only be hypothyroid with abnormal TFTs… and all such studies ‘prove’ they are right.

[shaws Administrator in reply to jimh111]

The 'professionals' rarely listen to the voices of the patients- neither do they seem to read any research articles.

They are also unaware that there are several 'options' for people to choose in order to restore their health but they refuse to prescribe.

[Ginny52]

Risible!

[MaryNYC]

Agree that it is awful, and poorly written as well. Noting this document is copy for a Patient Brochure, hosted on a consumer advocacy site, nothing more. Obviously written by a marketing type of writer without much and in the way of background or knowledge. While it should be accurate and evidence based, it is unlikely to go into the degree of detail that you have outlined here. I will try to read the whole thing and weigh in when I can. I am in the United States, and it is frustrating to see so much complacency and bad information that purports to be helping guide both patients and clinicians in decision making.

[helvella Administrator Thyroid UK in reply to MaryNYC]

The American Thyroid Association is not just another consumer advocacy site.

It is a global professional society of thyroid doctors.

Our Goals

We have established the following goals to help us fulfill our vision and mission:

To foster and support research on thyroid molecular and cell biology, physiology, and diseases.

To disseminate new knowledge that leads to prevention, diagnosis, and treatment of thyroid diseases.

To support education of trainees, basic scientists, physicians, and other health care professionals concerned with investigating, diagnosing, and treating thyroid diseases.

To establish and guide public policies on the causes, diagnosis, and management of thyroid diseases and related disorders.

To be the advocate for thyroid specialists in the councils concerned with science, clinical medicine, and health care delivery.

To encourage broad-based support from industry and other parties to fulfill the Association’s scientific and educational missions.

To stimulate philanthropic giving to a fund that supports the Association’s activities.

To enlarge and diversify the Association’s membership.

To develop, implement, and regularly review the Association’s long-term plan.

To foster contact, collegiality, and collaboration among members and within the international thyroid community.

To promote collaboration with thyroid societies in other regions of the world concerning public health and other scientific issues.

thyroid.org/about-american-...

It has many MD, PhD and other qualified members.

thyroid.org/thyroid-associa...

They really should do better than the very poor quality of that article.

[MaryNYC]

Meant this is a patient brochure for the patient-directed part of this site; this document is probably written by a freelance writer, regardless of who signs off and claims authorship of it ultimately. The AACE would be expected to have more rigorous guidelines for clinicians, although it is woefully behind the times also. But both have some version of clinical guidelines. This document is not that.

[jimh111 in reply to MaryNYC]

Could well be true. The UK guidelines written on behalf of the BTA / BTF (UK endocrinologists / patient support group) by PrescQIPP (UK group set up by many NHS hospitals) are actually written by Gemma Dowell a pharmacist living in Australia!!! These endocrinologists can't even be bothered to research and write their own guidelines - or perhaps want to avoid responsibility.

[TSH110]

Brilliant response!

[diogenes Remembering]

In the USA at the moment, Bianco et al say one thing about combined therapy and the ATA repeat the old error-ridden story. No supporting evidence - merely bald statements. Talk about confusion! Even in one country! Madness!

[diogenes Remembering]

It is truly ironic to see one of their aims is:

to disseminate new knowledge that leads to prevention, diagnosis, and treatment of thyroid diseases.

0/10 for that

[jimh111 in reply to diogenes]

Ha! Ha! Ha!

A bit of Christmas cheer, thanks.

[shaws Administrator in reply to diogenes]

They may not have realised that their hypo patients are not recovering and still complaining, no matter what is swallowed. Probably prescribe anti-depressants as they are fed-up with patients still complaining about symptoms.

[dtate2016]

So right on! Every single one of these points I have had some experience with to a greater or lesser degree. Especially has point # 2 been true for me and just lately. I have achieved a healing and “normal” levels were not there. And yet, thanks to this Avenue of information, and many others, I am well on my way - approaching one year without prescription replacement hormone, and only minuscule amounts of glandular T3 from time to time. Feeling wonderful after more than 30 years on the mainstream medical roller coaster. I do have the MFTHR genetic variation to deal with. Having finally put all the pieces together - again with the help of educator Drs like you and a couple of others, I found the key for me. It is a difficult mountain to climb. Thank you for your frank and factual reply to these so called “experts”! I too will add my voice and experience and accept your invitation to reply to them. Thanks again for your untiring efforts to bring an end to the ineffectual treatment of thyroid disorders.

[jimh111 in reply to dtate2016]

Thanks for your support. Please note I am NOT a doctor, I'm a patient.

[dtate2016]

Oh! Well you are an extremely educated patient. Thanks for sharing the facts just the same.

[shaws Administrator in reply to dtate2016]

Is it not surprising that many patients who have dysfunctional thyroid glands have to search the internet (if they're fortunate to have a connection) when it comes as a surprise that the prescription they're taking at present has not made any difference and that they still have disabling symptoms.

[BrynGlas]

So I gather the American Thyroid Association are not in favour of NDT? It is so blatant that they are obviously not worried about any pro NDT patients putting in their 2 pennorth!

B. the state of the art spell checker! It won't let me post it as I want to post it!!!!

There have been some weird and wonderful, attempts to understand what I am trying to post I have to say!!

Do you think the spell check is in cahoots with the ATA over the pond???