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:
- 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.
- to use the following laboratory tests as a guide in the assessment and treatment of hypothyroidism: TSH, free T4, free T3, TPOAb and TgAb.
- 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.
- 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
Please sign here2212 signatures for this petition
1 to 10
09/07/2010
Marian Dyer
United Kingdom
(no comment)
09/07/2010
Theresa Border
United Kingdom
I have lost years to hypothyroidism.
Treatment with Levothyroxine was totally ineffective in relieving symptoms and increased my weight substantially.
Armour natural thyroid, prescribed by my GP, enabled me to begin living again and to become the me I knew was always there under all those symtoms.
My subsequent GP refuses to prescribe Armour. Return to 2nd class life and health? No Way- I now have to purchase my own!
09/07/2010
KATE WHITAKER
United Kingdom
Why have I had to treat myself privately to regain my health and life???
09/07/2010
S Wheeler
United Kingdom
I have had four years of my life 'stolen' from me because the medical profession do not take hypothyroidism and low adrenal function seriously. The symptoms started in the late 1980's but it was not until March 2010 that I was finally diagnosed properly. By that time I was virtually housebound and unable to work for no justifiable reason at all. I had to endure the institutional insult of being labelled 'depressed', told that I 'look my age' by a government doctor assessing me for benefit, and that I should just go home and learn to 'pace' every activity. I am so very very lucky that my doctor is brave enough to risk being STRUCK OFF in order to help me. Despite the blood tests being 'normal' he began treatment (at a very low level) and then (secretly) advised me on how to tackle the adrenal problem. Over the past two years, he has quite literally given me back my life and I am now back at work and living a normal life. In March this year the annual blood test result revealed my level was at '4' when the lowest it should have been was '10.' This gave my doctor 'permission' to start treating me properly and officially. It is a scandal that he should have to put himself (and his family) in such a risky situation. Without him I would still be living on benefits, getting progressively more unwell and wondering what the heck I was going to do with myself for another 30 or 40 years - if I lived that long.
09/05/2010
Audrey Revell
United Kingdom
I have suffered significantly for over eleven and more years and have had every diagnosis barring hypothyroidism. I know that t4/t3 helps me but I am not being monitered by a medical person and now have to go privately to get some relief from this devastating illness that has taken all of those years from me. I appeal to all of the medical establishments to listen to the thousands of women affected by this condition but are not treated.I have been told that when I am ready to get well then I will. That if I had a good enough reson to get better then I would. That I am anxious(who wouldn't be when bedridden for weeks) that I have had a lot of stress and on and on.These comments from endocrinologists/pain management experts and the like.
I beg of you to listen please!
Audrey Revell
09/05/2010
Wendy Garbett
United Kingdom
(no comment)
09/04/2010
Paola Ormerod
United Kingdom
I am one of the many victims of this country, "Great Thyroid Scandal". It is only after having read a book written by Dr. Durrant-Peatfield that I realised why I continued to remain very ill on the synthetic levothyroxine treatment I was on for a few years. Now after only a few months on the natural replacement thyroxine I am feeling much better and full of energy and the majority of the symptoms associated with Hypothyroidism have greatly improved or disappeared . My GP is not helping very much so I am trying to find an Endocrinologist who will prescribe it, for me. At the moment I am paying for it myself at great expense and stress, ordering from the USA and I am self-medicating! The best thing I have ever done!
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)
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