Hi All
This may be a bit late but I read an interesting article in the Daily Mail, Health Section, yesterday, Saturday 9th October 2010, about a Grandmother who has been suffering from flu like symptoms for 16 years and it turned out to be her thyroid.
It is an intesting article, very enlightening, has anyone heard of Thyroid Advocacy?
Good reading
Lesley
Have just read the article online, here is the link..........
dailymail.co.uk/health/arti...
Interesting article, hope the link above helps
Louby x
that's what I thought, if the Daily Mail could get behind this and stir something up perhaps we all might start getting the diagnosies we need, lets hope!
just emailed the daily mail, under the heading of the article, perhaps others would like to elaborate on this.
thank you for publishing this article 9/10/10.
this remarkable story, if a good investigative journalist could be set to further researching the subject, would be matched by hundreds of others, my own included.
hypothyroidism is currently a GP managed condition, many people struggle to get a diagnosis, often wasting years spent in suffering. levothyroxine is the standard NHS treatment, but for some patients does not fully relieve their symptoms.
internet forums are fully of stories such as featured in your article. i work on telephone support lines for THYROID UK and have spoken to many people unhappy with NHS treatment of Hpothyroidism and living with symptoms.
as stated in the article, Hypothyroidism affects 1-2% of the UK population, approaching the statistics for Diabetes and is probably the most mismanaged common chronic health condition.
this is therefore a populist agenda and a major paper should be all over it.
should you wish to take this further either myself or others at Thyroid UK could target your research effectively.
regards jonathan wells
hypothyroid 23 years, diagnosed for 10 and still with symptoms on levothyroxine alone.
Hi Phicks
Whilst you are right in saying that our volunteers are not medically trained, we do have an extensive and informative information pack available, which many people find extremely useful. 
Louise
Charity Secretary
For many of us (volunteers), the journey to improved health has been a very, very long one and has been solely down to our own efforts. Although we are not medically trained, some of us have actually ended up with far more detailed knowledge and understanding of thyroid conditions than the (highly paid) medically trained consultants. In order to sort out our own problems with diagnosis and medication, we have had no choice but to research extensively and educate both ourselves and our doctors.
As individuals who actually suffer with the disease, we have the best motivation there is to sort out our health problem. To most of the medics, each one of us is just another patient on their very long list. The diagnosis and treatment of thyroid disease is highly controversial in many countries. Not only do the medicas have little motivation to 'think outside of the box', they also value their careers way too much to 'go against the grain'.
Thankfully the amazing resources available to us (internet), have allowed us to learn about the experience of others across the world, as well as constantly keep abreast of current research and treatments. NHS consultants simply do not have the time to do this, even if they wanted to.
I whole heartedly back the idea of getting our stories out into the public eye and hope that the daily mail can indeed take this further. It is not our job to spend so much time researching for more information on a condition that many of us had never even heard of before diagnosis. That is what doctors and experts are trained and PAYED to do. To suggest they do not have the time implies we are less important than other patients.
HypoT2years,
I dont disagree with you at all! Of course it is their job. Of course we are not less important than any other patient. Of course this should all be in the public eye. That is what Thyroid UK and other patient support groups, as well as some doctors individual volunteers are all striving for!
Hi all, I read this article too and very informative it was. If I go back to the doctors what is the name of the test to ask for to have the thyroid secretions tested? I must admit my surgery looks after me by sending for me every six months for blood tests but I still gain weight and my hair still falls out, and I still have joint aches and feel as though I am coming down with flu. So, I would love to know what the test is called. Thanks.
It's good that the media highlight Thyroid problems, and folk are referred to Thyroid UK for more info.
However I suspect that is as far as it goes. (Same thing happened in a news article about a singer with extra ribs!) Not enough is known, USA have more research it seems - although the problem seems to be growing????
As for the experts, your GP isn't an expert on everything, nor am I! but I am an expert on me, I have to be my own advocate. I believe in myself now. I've gained a lot of info from this site (and none from docs!). Thanks.
There are so many points here, I am ending up with a pot pourri comment. Hope you can see how it fits with the existing comments.
Just expecting that everyone who thinks that the Daily Mail should take up the cause of thyroid has written to the paper? Has commented on the story? Has looked back at the many previous thyroid stories in the Daily Mail? Has set up Google alerts to be informed of new thyroid stories? (Yes, I know some of you have taken at least some of these steps.)
Diagnosed hypothryoidism affects something like 2.1% of the population of England (and similar percentages in the other constituent countries of the UK). But the many stories here - and elsewhere - testify that there are also many undiagnosed hypothyroidism sufferers. So 1 to 2% looks to me to be rather an underestimate.
Some people, far from finding levothyroxine a poison, actually seem to do quite well on it. Yes, I do include myself. So far.
As sufferers we certainly are not paid to research thyroid disease but it behoves everyone to work at understanding whatever disorders they may suffer from. At least to the extent they are able. After all many diabetics have to take on self-testing and self-injecting and in order to do so effectively need to understand quite a bit. Your GP cannot be with you all the time - but you are. That is a critical difference.
And as for medics not having the time, it certainly seems to me that at least at GP level, doing research is simply not feasible. At best I'd expect GPs to keep up with current guidelines. Anyway, medics don't live with the disorder and however much they try cannot understand what it is like living with it. (That is said with the personal experience of failing to understand my partner's hypothyroidism until I too became hypothyroid.)
What are referred to as thyroid secretions are actually T4 (thyroxine) and T3 (tri-iodothyronine or liothryonine) - that is, the thyroid hormones. The most common forms of direct test for them nowadays are the free T4 and free T3 tests but other tests are available. The issue being made in the article is that the most common test of thyroid function is TSH (Thyroid Stimulating Hormone) which is actually made in another gland, the pituitary. TSH indirectly indicates likely thyroid hormone levels. You could argue it is like reading the speed of a car from the angle of the accelerator pedal rather than the speedometer.
Finally, if non-medically-trained volunteers are so utterly unable to help it is surprising how many questions are asked and answered. And if you have the resources you most certainly can pay for professional help. If you haven't got the resources then you have to make the most of what is available.
Rod
Flu symptoms are part of the thyroid symptoms list. Some say it's related to ME caused by thyroid.
Our GP's and endocrinologists have to follow the guidelines laid down by the British Thyroid Association, and my GP can only prescribe generic levothyroxine. It would appear that, even if we are not feeling better on levothyroxine (and blood tests are within range) there is not much chance of being able to try an alternative thyroid medication.
That is what ThyroidUK are - a support group for sufferers. Each one of us has different needs and what suits one person may not suit another. It is only through this Group that I have been able to understand about hypothyroidism and the difficulties, and have slowly learned a lot of very useful and helpful information. Thank God for the internet and all the volunteers who enable this site to exist.
There is a yahoo web site group called 'Thyroid Advocacy' which is run by a lady called Sheila who campaigns tirelessly for the cause of better treatment for Thyroid patients. It is a very busy group with a high volume of posts further indicative of the dire need for better and more informed treatment in this area of medicine.
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