1. Sally Anne Beaman Sally Anne Beaman United Kingdom says:

    I am one of the people who was diagnosed as hypothyroid after becoming so ill I could not walk to the end of the road, having previously being active and healthy. I immediately began to improve when put on to thyroxine. However, I was not allowed to increase the dose beyond 50mcg because this brought my TSH below the 'normal' range. It was over 18 months before I was given a consultant appointment, during which time I had dragged myself around. The consultant I saw was not an endocrinologist, did not have my notes and had 'diagnosed' me as suffering from CFS after about 3 min's. He did not offer any further treatment, as he said there were no specialists in Wales. I struggled on for a while longer and then saw another GP who was willing to try me on a higher dose of T4. I immediately felt better - maybe 90% or more of optimum health expected, BUT when the TSH result showed below normal, she reduced it again and with it my state of health. We negotiated a trial of 62.5mcg, which improved my health just enough to struggle on with full time work, but even this produced a TSH below the 'normal' range. She did agree to refer me to an endocrinologist. (However the appointment offered by the hospital once again was with a general physician). So after feeling so unwell for 3 years I decided to go against all my principles (I'd worked for 24 years in the NHS) and pay for a private consultation with an endocrinologist. He said he was happy to increase my T4 as long as my TSH was measurable. It certainly was easily so on my previous trial. So once again I have a reprieve. He has also said that if T4 alone is not sufficient to make me well he will be happy to allow me to try adding T3. I'm so happy to have hope at last. I have talked to GPs elsewhere in the country who say this is common practice in their surgery. Why oh why are so many patients made to suffer unnecessarily for want of cheap, easily available medication? If the RCP have so much evidence to support their guidelines why don't they publish it? There is so much evidence published in professional journals that appears to contradict their guidelines, surely they would want to explain themselves for the sake of their clinical colleagues if not for their patients. The endocrinologist was able to put a rough figure on the risk factors, which other practioners had not been able to do, so that I was fully informed of ny risk, which was minimal. I would have gladly given up many expected years of life in order to LIVE rather than live a living death for longer, always assuming the covert hypothyroidism didn't kill me first!

    Why oh why are so many patients made to suffer unnecessarily for want of cheap, easily available medication? If the RCP have so much evidence to support their guidelines why don't they publish it? There is so much evidence published in professional journals that appears to contradict their guidelines , surely they would want to explain themselves for the sake of their clinical colleagues if not for their patients. (I am a retired clinical scientist and as such know all about clinical trials and extracting the relevant facts from scientific papers.) There is such a weight of arguments against them I urge them to organise an open meeting where they can explain how they arrived at their conclusions and allow plenty of time for questions. At the moment we live in a post code lottery. I presume that epidemiological data in itself will be quite revealing. Some patients have been treated with THS below 'normal' or with T4/T3 combinations or natural thyroid extract for decades whilst others have been deprived of this. If the RCP guidelines are correct a large reduction in life expectancy will be evident in the former group. Even if this is the case surely patients should be given a fully informed choice as they are in so many other situations where far more potent drugs are used.

    Patients are not paying huge amounts of money for private treatments for fun, but because they have been offered NO other alternative that works.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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