This is what I wrote

[Guest guest]

I have written to The Sun as follows: - and sent them a challenge.

If you REALLY want a scoop, a scoop that will bring thousands of new readers to your paper, then should you DARE to tell the horrendous story of the terrible suffering that hypothyroid patients have to contend with under the care of the NHS (or, more correctly, the British Thyroid Association (BTA)) then I would suggest one of your Investigative Journalists contact Holmes personally (or myself at the website given below) for a story that will guarantee this. Holmes has done more to help the suffering of hypothyroid patients than all the UK NHS medical practitioners put together. She has lost years of her life to terrible ill health, almost ending her days at that particular time in a wheelchair, until she sought help outside of the NHS to try (after numerous misdiagnosis within the NHS) to reclaim her health. The ‘private’ doctors who helped her did so by diagnosing her with hypothyroidism (too low thyroid hormone in the body) and treating her with a medication that is outside the recommended BTA guidelines. This was a medication that has been used for ALL sufferers of hypothyroidism for over 100 years and was the ONLY treatment, which was a safe and effective treatment. Sadly, this is a natural product - the desiccated thyroid glands of pigs - the nearest thing to our own thyroid glands, and because it is 'natural', there is no money to be made and the BTA has laid down the law that only synthetic Thyroxine (T4) should be used now for all sufferers. Natural thyroid extract contains all the normal thyroid hormones a body needs. L-thyroxine (T4) is an inactive hormone and it has to convert to the active hormone T3. T3 has to get into every cell in the body to make it function. Many sufferers are unable to convert for many reasons – but the BTA will tell you that EVERYBODY can convert, but they are wrong and there is plenty of evidence by way of studies and research to show this. These people suffer with horrendous symptoms, often having to leave paid employment and live on State Benefits, and they gradually become so terribly ill, until, like , who was left without the a correct diagnosis and the necessary treatment she needed, they end up wheelchair bound – many wanting to end their lives. The NHS one and only treatment protocol is the cause of thousands of sufferers who are now in a similar position to where found herself before she was made well again. The doctors who gave back her normal health were reported to the General Medical Council (GMC) for daring to diagnose and treat outside the BTA protocol and they had to stand trial for doing what a doctor is supposed to do, to work towards getting their patients well again. Many other doctors have been reported to the GMC for similar ‘misdemeanours’ – and some members of the BTA actually stand as ‘Expert Witnesses’ for the GMC. Is that right? Their own past President has acted as the GMC Expert Witness on several occasions against doctors who have helped their patients outside of the BTA protocol. Now, because of this, NHS medical practitioners dare not step outside this protocol, which is wrong, but which they know, should they dare to do so, they risk being reported to the GMC and probably lose their livelihood. Because of 's return to normal health, she has done everything within her power to campaign for a better diagnostic and treatment protocol to allow patients a CHOICE of treatment so other sufferers could regain their health too. She has sent hundreds of letters to the Department of Health, to every politician, to the World Health Organisation etc etc: she organised a massive Hypothyroid Patient's Petition collecting over 3000 patients signatures that was delivered to the GMC, the DoH and other thyroid organisations (who have done nothing about it: she has been responsible for arranging Early Day Motions (EDM’s) asking all MP’s to sign a statement asking that the diagnosis and treatment be changed: she has written a book with the very appropriate title "Tears Behind Closed Doors" which is available from Amazon for all sufferers of hypothyroidism to help them understand their illness; she ran a telephone helpline for sufferers, and this was manned 24 hours a day - just so they could have somebody to talk to, who would listen and understand their plight and yes - I could go on, and on and on… telling you what she has done. I could also go on and on and on… telling you the suffering that I hear and read on a daily basis on my Internet Hypothyroid Patient forum. Why are there so many thousands of members of such forums – because the NHS (through the BTA)give out misleading information in many instances and are leaving them to suffer. The BTA are a group of self appointed endocrinologists – neither the Government, the Doh or anybody else employs them; they make their own rules and make sure doctors follow their rules. They write misleading and in parts, incorrect information in Statements they put on their website about thyroid hormone combination therapy, either synthetic T4/T3 therapy or natural thyroid extract, in what appears to be an attempt to stop all NHS doctors from prescribing this and forcing them to stick with prescribing synthetic thyroxine only – the money-maker. I responded to the BTA on 17th March 2008 pointing out their misleading and incorrect information in the two documents on their website, and backed my responses with almost 300 references as evidence. I asked the BTA to amend their statements – they have not done so. Doctors are supposed to keep their knowledge up to date. Not the BTA it appears. This is the ignorance that people such as Holmes and other thyroid advocates have to contend with and what we have to fight to get our voice heard. , like me, does not get paid for the work she does, she does all this work in her own time, when others are enjoying their retirement; she does to help those she can, but, at risk of people who are ignorant of the facts and decide, instead, to ridicule her. I have been told by one NHS endocrinologist that we thyroid advocates are the “lunatic” fringe”. We have ridiculed in medical journals in articles written by Professor A.P Weetman (past President of the BTA) stating that those patients who complain of symptoms when prescribed L-thyroxine, are suffering from a “somatoform disorder” – meaning - it’s all in our head. We thyroid advocates are used to being ridiculed - but to try to sell more papers using in the way you have is not something you should be proud of. Jerome Burne (freelance journalist) wrote a two page spread about hypothyroid patients being refused a diagnosis and therefore, getting no treatment because doctors tell patients that if their thyroid function blood tests are within the reference range, they don’t have a thyroid problem – irrespective of the horrendous symptoms and signs they have. This article was published in the Daily Mail early last year. The Daily Mail telephone lines were jammed because of the thousands of readers who tried to call to get more information. I run Thyroid Patient Advocacy-UK (www.tpa-uk.org.uk) and I was contacted to see if I could organise a team of people who would be willing and able to take the strain from their telephonists so the Mail could get on with its normal business. I can understand your need to keep your readers titillated in the hope they will buy your paper, but seriously, please take the situation of thousands of sufferers of this disease seriously and give the kudos for the very hard work she has been doing in the past and is continuing to do to help everybody, including medical practitioners. Get your Investigative Journalist to look into who is getting what out of keeping hypothyroid sufferers undiagnosed and untreated. Give us a break - and I can guarantee you will have thousands of new readers flocking to read the results. This is the biggest faux pas ever to have taken place in the medical world - and everybody should celebrate Holmes’ work. Come on, I challenge you. I have hundreds of stories from my members that would break your heart – come and read the misery caused by the ignorance of some medical practitioners who will not look at the facts…and also read ’s book to see the tremendous work she has put into helping her fellow sufferers. Sheila Thyroid Patient Advocate www.tpa-uk.org.uk

[Guest guest]

A brilliant letter Sheila.

[Guest guest]

>

> A brilliant letter Sheila.

>

Could not agree more! Absolutely brilliant, Sheila ))

I have written too, and it hasn't been published and I don't expect

it to be. I have 'named and shamed' - and they won't like that. At

least all the letters that have been published so far have been

consistent in saying the same thing ... and most likely not what

the " Sun " expected to hear. They wanted a cheap laugh... But those

letters that won't be published will still have an impact. They will

be read, I am sure of that - and perhaps the collective message will

eventually trickle through.

Sheila - your challenge will hit a nerve with somebody. Question

is ... will they dare to take it up, or is the medical establishment

too powerful a body to take on? - Here's to hoping !!

However - I've forgotten who said it on here a couple of days ago,

but I agree with the sentiment.... There is no such thing as 'bad

publicity'. Any publicity will make people talk - and talk raises

awareness.

[Guest guest]

Can you point me in the direction of of the advice from the human rights commission where they say that hypothyroidism is considered as a disability. This is VERY important informaiton for us. Every little piece of informaiton such as this is vital to our cause.

Luv - Sheila

Maybe it might be an idea to contact the equality and human rights commission for advice. I'm currently experiencing problems with my employers and was advised by the equality human rights commission that hypothyroidism is considered as a disability. There is alot of useful information about human rights on their website.

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[Guest guest]

Hello, I contacted them because of my problem with work and was told by a laday who works there. This page give information of the definition of disability: http://www.equalityhumanrights.com/en/yourrights/equalityanddiscrimination/Disability/Pages/Wordsusedtodefinedisability.aspx I would contact them and get them to send you something in writing which explains why it is considered a disability. Lindsey X+ sheilaturner <sheilaturner@...> wrote: Can you point me in the direction of of the advice from the human rights commission where they say that hypothyroidism is considered as a disability. This is VERY important informaiton for us. Every little piece of informaiton such as this is vital to our cause. Luv - Sheila Maybe it might be an idea to contact the equality and human rights commission for advice. I'm currently experiencing problems with my employers and was advised by the equality human rights commission

that hypothyroidism is considered as a disability. There is alot of useful information about human rights on their website. . No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.10/1586 - Release Date: 01/08/2008 18:59

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[Guest guest]

Hi Lindsey,

You may have already considered this angle, but if not, the Disability

Discrimination Act DDA 1995, which became law in 1995, considers

disability to be ANY long term condition that impairs a persons ability

to go about daily life in the usual way. I think their interpretation

of long term is in excess of one year?

Anyway, hope that helps with work.

x

>

> Hello,

>

> I contacted them because of my problem with work and was told by a

laday who works there. This page give information of the definition of

disability:

>

>

[Guest guest]

That is an excellent link , thanks.

It actually covers one of my queries. Basically, I can pass as

normal if I manage my environment. I really only become impaired in

adverse environments which do not affect most other people. My

health starts to fall to pieces when I'm exposed to noise, strobe

lights, the flicker rate of some modern lighting, carpet cleaner and

air freshener fumes, etc. My hearing impairment is a piece of cake

by comparison and yet that is the one generally regarded as

my " disability " . I've copied the bit (below) from the webpage which

is most relevant to me.

I am interested in the concept of thyroid problems as a disability

as I'm pretty damned sure that my collection of weird reactions are

realted to years of no diagnosis or medication. However, I tend to

avoid being too upfront on job applications in case I shoot myself

in the foot.

Tracey

" If changing your behaviour reduces the adverse (or negative)

effects of your impairment on day-to-day activity, then you may not

be covered by the DDA. However, you do not have to go to great

lengths to change your behaviour. For example, a person with a

stutter does not have to avoid going to places where they might meet

people. This change could itself have an adverse effect on your day-

to-day activities.

If the success of any coping strategies you use to reduce the

adverse effect of your impairment is lessened by `environmental

factors' (such as extreme heat, humidity, how tired you are or how

stressed you are), then this should be taken into account. "

> I contacted them because of my problem with work and was told by

a laday who works there. This page give information of the

definition of disability:

>

http://www.equalityhumanrights.com/en/yourrights/equalityanddiscrimin

ation/Disability/Pages/Wordsusedtodefinedisability.aspx

>

> I would contact them and get them to send you something in

writing which explains why it is considered a disability.

>

> Lindsey X+

[Guest guest]

You aren't legally bound to disclose a disability when applying for a job. I wouldn't want to for fear of them not offering you an interview etc. It is very difficult to prove you have been discriminated against when it comes to interviews and applying for jobs. I went for a promotion at work and the job was given to a less qualified less experienced member of staff. I was asked in my interview about having ME/CFS and a thyroid problem, so it's obvious why I didn't get it. It was virtually impossible to prove so I couldn't do anything. If you are successful and are offered a job, I would however let your employers know that you have a disability after signing the contract in case they try to discriminate against you at a later date. redharissa <redharissa@...> wrote: That is an excellent link , thanks. It actually covers one of my queries. Basically, I can pass as normal if I manage my environment. I really only become impaired in adverse environments which do not affect most other people. My health starts to fall to pieces when I'm exposed to noise, strobe lights, the flicker rate of some modern lighting, carpet cleaner and air freshener fumes, etc. My hearing impairment is a piece of cake by comparison and yet that is the one generally regarded as my "disability". I've copied the bit (below) from the webpage which is most relevant to me.I am interested in the concept of thyroid problems as a disability as I'm pretty damned sure

that my collection of weird reactions are realted to years of no diagnosis or medication. However, I tend to avoid being too upfront on job applications in case I shoot myself in the foot.Tracey"If changing your behaviour reduces the adverse (or negative) effects of your impairment on day-to-day activity, then you may not be covered by the DDA. However, you do not have to go to great lengths to change your behaviour. For example, a person with a stutter does not have to avoid going to places where they might meet people. This change could itself have an adverse effect on your day-to-day activities.If the success of any coping strategies you use to reduce the adverse effect of your impairment is lessened by `environmental factors' (such as extreme heat, humidity, how tired you are or how stressed you are), then this should be taken into account."> I contacted them because of my problem with work and was told by a laday who works there. This page give information of the definition of disability:> http://www.equalityhumanrights.com/en/yourrights/equalityanddiscrimination/Disability/Pages/Wordsusedtodefinedisability.aspx> > I would contact them and get them to send you something in writing which explains why it is considered a disability.> > Lindsey X+

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[Guest guest]

Hello, Thanks for that. I couldn't remember the exact reason why. You are considered disabled if a condition has affected you for 12 months or more. I contacted a solicitor and the equality human rights commission re my work problem. I work for a large quite powerful company and so needed to get backing from the right people to persue my grievance. They helped me word my letter and they told me how I had been descriminated against and what section to relate it to in the act. I will just have to wait and see what happens. I will take them to a tribunal if I have to, although I'd rather not to be honest. I don't think my adrenals could cope with the stress at the moment, LOL. Lindsey X <marylinda@...> wrote: Hi Lindsey,You may have already considered this angle, but if not, the Disability Discrimination Act DDA 1995, which became law in 1995, considers disability to be ANY long term condition that impairs a persons ability to go about daily life in the usual way. I think their interpretation of long term is in excess of one year?Anyway, hope that helps with work.x>> Hello,> > I contacted them because of my problem with work and was told by a laday who works there. This page give information of the definition of disability:> >

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[Guest guest]

Exactly, we have to measure our intended actions in terms of the stress

they cause us too, our health is the most valuable commodity we have,

and is already compromised!

Your employer, I believe, has a responsibility to make 'reasonable

adjustment' to meet your requests. Of course, agreeing the definition

of 'reasonable'is likely to be the most stresssful part.

Good luck and good health to you.

x

> Hello,

>

> Thanks for that. I couldn't remember the exact reason why. You a

[Guest guest]

HI Lindsey

Keep us all up to date with this won't you, because this could set a precident and many of our members (in fact, the majority of hypothyroid sufferers) could benefit. I would like to be able to site your case if you should win, and would need to know everything you did right from the start, so if it wouldn't be too much of a problem for you, could you give me a copy of your 'diary' up to date.

Many thanks

luv - Sheila

Hello,

Thanks for that. I couldn't remember the exact reason why. You are considered disabled if a condition has affected you for 12 months or more. I contacted a solicitor and the equality human rights commission re my work problem. I work for a large quite powerful company and so needed to get backing from the right people to persue my grievance. They helped me word my letter and they told me how I had been descriminated against and what section to relate it to in the act. I will just have to wait and see what happens. I will take them to a tribunal if I have to, although I'd rather not to be honest. I don't think my adrenals could cope with the stress at the moment, LOL.

Lindsey X

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