"Concern over the diagnosis and treatment of hypothyroidism"
Posted by Campaigner (as ),
I suffer hypothyroidism. I was treated with levothyroxine (T4) for 4 years having had the dosage increased from 25mcgs to 125mcgs. I could not regain my health and was gradually getting more debilitating symptoms. My GP increased my T4 to 150mcgs - I still got worse. I finally went to see a private hormone specialist who found I could not convert the 'inactive' hormone thyroxine (T4) into the active hormone triiodothyronione (T3). T3 is needed by every cell in your body and brain to make them function. He started me on natural desiccated porcine thyroid extract, a medication that has been used for over 100 years that has been used safely and effectively before the synthetic thyroxine was manufactured. This is called Armour Thyroid and contains all the thyroid hormones needed by the body and brain. It fell out of favour when synthetic thyroxine was manufactured. I regained my health 100% and five years later, I am still taking Armour thyroid, recommended and prescribed by enlightened medical practitioners. I am deeply concerned that doctors are not being given the correct information when taught at student level about the diagnosis and treatment of this disease. The NHS recommend only the one treatment for sufferers (L-thyroxine), and if the patient does not regain their health, they are being refused a combination of T4/T3 therapy and/or a trial of natural thyroid extract - both of which would help patients return to normal health. Doctors diagnose this disease through the results of thyroid blood tests only and pay no account of a patient's symptoms and signs, nor do they do a physical examination, which they should. This diagnosing and treatment protocol comes direct from the British Thyroid Association (BTA), who is NOT sponsored by the Department of Health, nor are they linked to the Department in any way whatsoever. I feel strongly that the Department are not listening to patients who complain long and bitterly about their lack of appropriate treatment and care within the NHS, yet allow the BTA to carry on with its misleading and incorrect statements. The Department also refers people who write about thyroid disease to the BTA. The BTA recently published two statements on their website about natural thyroid extract and synthetic T4/T3 combination therapy, backing up their statements with four references. Many of the statements are misleading and incorrect and this is causing great concern, confusion and sheer frustration for both doctors and patients alike. Thyroid Patient Advocacy-UK has corrected the BTA Statements and backed up it's research with almost 300 citations asking the BTA to update their statements. Copies were also sent to Lord Darzi and Alan Johnson MP, but the response received from their spokesperson stated that they were too busy to respond to all the letters sent to them, and that was all. A complete waste of time, and an insult to the work that had gone into researching for the correct information to help the Department. This 26-page response was sent to the BTA Executive Committee on 17th March 2008. To date, they have not even acknowledged receipt. The GP's and endocrinologists look to the BTA for guidance and they follow the BTA guidelines. Why is nobody within the NHS promulgating the correct procedure for diagnosing and treating this disease instead of automatically recommending people to contact the BTA should they need further information. There are tens of thousands of patients in the UK who are being left without a diagnosis and the level of treatment that will make them well again, and those suffering through lack of care and support from the NHS are being forced to leave paid employment and live on State Benefits. The majority of these sufferers need a combination of T4 and T3, either synthetic or natural, but nobody in the DoH is listening. The stories I hear on a daily basis from members of Thyroid Patient Advocacy-UK Internet Forum are truly heart breaking. Professor Tony Weetman, past President of the BTA published an article in two medical journals, Medscape and Clinical Endocrinology where he stated that those patients on levothyroxine therapy, who had blood results within the reference interval and who still complained of symptoms, were suffering from a somatoform disorder - meaning, it's all in our head. Any doctor within the NHS who dares to diagnose and treat hypothyroidism outside the BTA guidelines, seriously run the risk of being reported to the GMC (many have already been reported) and risk losing their livelihood. Doctors who CARE about the suffering of their patients. This is appalling and very frightening. For the sake of all sufferers of hypothyroidism in the UK, who are being ignored and being refused a choice of treatment - shame on the Department of Health! Sheila Turner Thyroid Patient Advocate
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