Consensus # 1 International Thyroid Patient Organisation (ITPO)

PATIENTS' PETITION FOR BETTER DIAGNOSIS AND TREATMENT CHOICE FOR HYPOTHYROID PATIENTS

We, as thyroid patients who circle the world, feel the time is long overdue for the medical profession to amend the current protocol regarding the treatment of hypothyroidism.

We have first hand experience of the failure of treatment with thyroxine (T4) only, as well as the inadequacy in diagnosing and dosing according to the TSH laboratory reference range. Adherence to this protocol has allowed our cholesterol to rise, chronic depression to hinder our lives, our aches and pains to continue, our hair to thin, our sense of feeling cold to continue, our thinking processes to be foggy, our abilities to work and live adequately to be compromised, our immune systems to be weak and caused many other symptoms due to under-treatment which have been affecting our health and well-being.

Yet, our experience and clinical presentation of the failure of thyroxine to relieve our symptoms has been repeatedly dismissed and ignored by too many doctors, who often attribute these hypothyroid symptoms to “somatoform” disorders.

Although thyroxine only treatment works for many people, it is not ideal for everyone – a combined treatment of thyroxine and tri-iodothyronine (T4/T3) should also be considered as should natural desiccated thyroid extract (the best known is Armour® Thyroid, USP), which was the only treatment prior to the introduction of synthetic thyroid hormone replacements. Many patients using thyroid extract are reporting a resolution of all the above-mentioned problems encountered whilst on thyroxine treatment alone, which may be due to the fact that thyroid extract contains all the hormones a normal thyroid produces – T4, T3, T2, T1 and Calcitonin.

We recommend the following safety guidelines where the combined treatment of T4/T3 or thyroid extract are used, and in the following order:

1. to screen patients with thyroid deficiency for low adrenal reserve, a condition that may be more common than generally expected. Patients with weak adrenals may have difficulty tolerating the dose of thyroid hormone they need, and may experience apparent "hyperthyroid" symptoms, even at low insufficient doses. In other patients with low adrenal reserve the problem may be the opposite: the patient may remain hypothyroid even at higher doses of thyroid hormones. Thyroid hormones can not be normally used by the cells and may instead build up too high in serum, leading the physician and patient to believe that a particular dose is too high and that the treatment doesn't work. The solution to both problems is treatment of the low cortisol condition, prior to the thyroid treatment, or simultaneously.


2. to use the following laboratory tests as a guide in the assessment and treatment of hypothyroidism: TSH, free T4, free T3, TPOAb and TgAb.


3. to start the combined treatment at a safe low dose of T4/T3 synthetic combination, or, if thyroid extract is prescribed, physicians should familiarize themselves with the equivalence of this medication compared with thyroxine and begin treatment on an appropriate safe dose, e.g. 1/4 grain of Armour® Thyroid USP for patients with low adrenal reserve, or 1/2 to 1 grain otherwise, and to have their dose adjusted according to their clinical needs every few weeks.


4. to listen and give more credence to patients’ subjective reports of symptom continuance or resolution, rather than make laboratory results the sole guide in dosing.

Moreover, we advocate that medical practitioners should have freedom of choice in prescribing T4 alone, combined T4/T3 or thyroid extract, without incurring the wrath of the mainstream establishment as happens at present in some countries.

We strongly recommend that physicians address the misconceptions that thyroid extract is inconsistent, dangerous, unreliable and/or outdated, and recognize that thyroid extract products such as Armour® Thyroid; Westhroid® and Nature-Throid® meet the stringent guidelines laid down by the United States Pharmacopoeia (USP), and the Food and Drug Administration (FDA). We also feel that physicians should make a full assessment of the clinical presentation of patients already on this medication.

In conclusion, we further strongly recommend that the selection of treatment, whether it is synthetic or natural, should be a matter between the patient and the doctor, both having freedom of choice in this respect.

compiled by :

Sheila Turner ( UK ) tpa-uk
Susanne König ( France ) geocities.com/thyroide
Sabine Seichter ( Germany )
Janie ( USA ) stopthethyroidmadness
Lyn Mynott ( UK ) thyroiduk

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09/02/2010

Cynthia Ryan

Canada

(no comment)

09/02/2010

Christopher Hodgson

United Kingdom

Just attempting to leave levothyroxine and go onto armour, my GP is enthusiastic however we are trying adjusting my levothyroxine dose first. I never knew there were alternatives available and have certainly not had them reccommended by any of my GPs.

09/01/2010

Elizabeth Elliott

United Kingdom

(no comment)

09/01/2010

CAROL WORTHINGTON

United Kingdom

just want to feel well been fobbed off too long, and would love a walk round Tesco, but haven't got the strength

08/14/2010

Louise Smith

United Kingdom

(no comment)

08/13/2010

Patrice Baugier

France

(no comment)

08/13/2010

Säteri Kicki

Sweden

(no comment)

08/11/2010

Joann Sustachek

United States

(no comment)

08/11/2010

Nicola Clark

United Kingdom

trestment should be patient led, doctors should listen more to patients and be more open instead of conforming to the tyranny of the test result. It is by being open to patient experience that proper treatment regimes that are effective will be developed. Nobody can tell anybody else how they're feeling individual experience is unique and this should be acknowledged and worked with within the NHS. The medical establishment should also get out of the pockets of the big pharmaceutical companies, why is there a medical establishment in the 1st place? to meet the needs of the patients or the needs of the big pharma? BACK TO BASICS!!!

08/11/2010

Beate Shreeves

United Kingdom

I have been on thyroid replacement therapy for 26 years, after 2 operations which effectively removed my thyroid.
But in the last 8 years I have ecperienced various problems.
And after fighting for years and experiencing a myriad of problem, joint pains, double vision, chest pains, chronic tiredness, over emotinal, depression, loss of memory, lack of concentration and body tempeartures so low my thermometer would not register them anymore, I effectively bullied my doctor in prescribing a dose that let me live again.
Which was 'allowed' for a year.
But now I am supposedly on to high a dose and after having been 'prescribed' to come of any treatment for this whatsoever for a month or so (no regular checks to be done) so I can be re-assessed, after one week I already feel so unwell I could cry (literally)
And as always, I have to tell my doctor what the symptoms are, and often get told, that the doctor had not been aware that this could be one of the symptoms.