RE: Letter to MP

[Guest guest]

You can count me in. I may even deliver it personally.

Love

Jacquie

[Guest guest]

Sheila, you write the most intelligent letters I've ever had the pleasure to

read !!!!

Cheers,

JOT

[Guest guest]

Thanks

Bob, an excellent idea. The Department of Health need to know about this, and

more, the DoH need to know that we patients know about this and questions need

to be asked from the BTA/RCP WHY they are proscribing all T3 containing

products. Inserting the paragraph where you have marked is excellent.

Luv

- Sheila

I

am minded to include this statement:-

Except

that Professor Ross of Sheffield University (of which Professor AP

Weetman is Pro-Vice Chancellor and formerly President of the BTA) has a

patented idea to supply a long-acting version combining both Thyroxine (T4) and

Triiodothyroine (T3) in one tablet, but which seems to duplicate the effect of

taking the ‘standard’ medication at bed-time instead of in the

morning. No credible testing has ever been carried out to determine the

appropriate time schedule for the singular medication Levo-Thyroxine (L-T4).

Professors Ross and Weetman were co-authors of the paper on the circadian

rhythm of thyroid hormone, output some years ago ~ subject matter incorporated

in the Ross, US Patent Application.

This

technique is known as re-greening the profit stream and recreates another

‘protected’ profit stream ~ granting exclusivity to the Business

that manipulates the patent system (quite close to fraud).

Bob

**

Suggested insertion below, of the above text

The

proscription of T3 containing products is not only illogical, unethical and

nonsensical; it is not medically reliable.

**

Suggested insertion here, of the above text

[Guest guest]

DONE. To Huw Irranca-Davies

Im hoping that many of them who have loved ones suffering will find the penny

dropping and come join us.

Carole

[Guest guest]

If you search for your MPs website, you may find that he has a PERSONAL email. I

just found mine does.

" If you live within the Parliamentary constituency of Bromley and Chislehurst

and wish to raise an issue with me, please send me an email.

bob.neill.mp@...

You can also write to my Parliamentary Office where all my correspondence is

handled:

Bob Neill MP

House of Commons

London

SW1A 0AA

Alternatively, you can get in contact by phone: 020 7219 8471 "

I shall definitely be sending it to his personal email as I believe it may

surpass his Parliamentary Office.

Love

Jacquie

[Guest guest]

Well done Sheila!!!!I will attack my MP again-I contacted him a few months ago from the angle 'can't be treated as normal bloods put me outside the GPs remit, am looking after myself having seen Dr Peatfield privately (saving the NHS) - and 240mgs Armour can't be wrong!- but can we please have  a break on VAT on essential medicine?????- it got the inevitable 'Sorry we can't help you' with a pre-formed, mass mail out letter re 'what VAT is about'. Grrr!

Now I have another raft of info I can go again from the angle that really IS the crux of the matter.Thank you for everything you are doing.Regards,Steph On 28 June 2011 16:50, SheilaT <sheila@...> wrote:

[Ed]

[Guest guest]

Hi Sheila,

I've tinkered around with the letter a little to give it more impact. You can delete it if you don't like it.

I've tried to take out as much repeated text as possible and broken it down into more paragraphs and bullet pointed lists. It makes it more dramatic but still keeps the logic and professionalism of your letter.

See what you think.

Glynis

Dear sir / madam,

I am aware that the Government has issued a warning on the UK's 'staggering' debt and that Government faces a "formidable" challenge to repair its battered public finances.

Savings could be made by giving patients improved treatment and medication. At present the Royal College of Physicians and the British Thyroid Association are firmly behind the T4 only therapy, ignoring the vast medical evidence to the contrary.

With T4 only therapy, patients require many other drugs to treat their symptoms, which if they have been diagnosed, are free, as Hypothyroid is a long term illness, this represents a huge amount of unnecessary drugs, costs and the risk that patients will suffer further from interactions between the different drugs they are taking.

I am a member of the Thyroid Support Forum “Thyroid Patient Advocacy” (TPA) www.tpa-uk.org.uk set up by patients for patients, currently having 2280 members. TPA is a Registered Charity (No. 1138608) and its aims are to campaign for a better diagnostic and choice of treatment protocol for those suffering the symptoms of hypothyroidism.

Besides the poor diagnosis and treatment of Hypothyroid patients, on-going ill-health has forced many sufferers into leaving paid employment and onto State Benefits – unable to work due to the daily suffering they endure because of incorrect and uninformed treatment.

A Public Enquiry into the events, actions and statements published by the Royal College of Physicians (RCP) (London) and the British Thyroid Association (BTA) is needed to get some justice for patients.

It must be remembered that these are NOT elected bodies but they have set themselves up as judge and jury. Their inaction and deliberate denigration of any other diagnosis and treatment protocol has denied as many as, 250,000 UK citizens an appropriate choice of thyroid hormone replacement that would return them to optimal health and hence, back to work.

Lets be clear about this, the problem is NOT medical, more a reluctance to change or accept the medical information that is available. There are over 1,280 counterexamples to the treatment with a drug called Levothyroxine which is synthetic contains only T4 and is, in many cases unsuitable for the treatment of thousands of patients.

Every cell in the body and brain needs the thyroid hormone T3 to function – NOT T4. Yet, RCP, BTA et al. statements recommend doctors treat hypothyroidism with the mainly inactive T4 ONLY, and that T3, (the ACTIVE thyroid hormone) whether synthetic or natural, should not be used.

T4 is a pro-hormone that must convert to T3, or it is unusable, and the body becomes toxic with too much T4 in the blood.

T4 `appears' to work for many sufferers at first, but a large minority, for many and varied reasons, are unable to convert it to T3 and are being left to suffer for years.

Frighteningly, the BTA, RCP et al. actively boycott all T3-containing thyroid hormone products, even though many cannot live without T3.

TPA has collated information from verified international sources to provide a Register of Counterexamples to Levothyroxine-only (T4) therapy of patients still suffering symptoms, whose symptoms were mitigated or improved using the active thyroid hormone Triiodothyronine (T3) therapy.

The definition of a counterexample is as follows:

A counterexample is a situation which fits the concept or premise of an idea but produces a different result. To be responsible, a scientist who finds a counterexample to his idea must limit or abandon his idea as unworkable or not reliable.

The counterexamples show the present diagnosis and treatment recommended by the RCP, BTA et al, of many patients with symptoms of hypothyroidism, is a clear contravention of their Human Rights.

This situation must not be allowed to continue, as my MP I demand that you do everything in your power to change this intolerable situation to ensure that patients are treated properly.

Tens of thousands of UK citizens are being denied a proper diagnosis because of the excessive `normal' reference range of inaccurate thyroid function blood tests.

The seriously flawed 'Guidance on the Diagnosis and Management of Primary Hypothyroidism' tells GP’s they should not give a diagnosis of hypothyroidism if a patients' serum Thyroid Stimulating Hormone (TSH) test result is within the reference range of:

0.5 to 10.0uM/L.

This UK reference range is extreme when viewed alongside reference ranges from any other country in the world.

Many countries reduced their range considerably.

In 2003, the American Association of Clinical Endocrinologist's (AACE) recommended their TSH range be narrowed from

0.5 to 5.0 mU/L

to

0.3mU/L to 3.0mU/L.

At the same time, Germany, Belgium and Sweden's range has also been narrowed down to

0.3 to 2.5mU/L.

Belgian endocrinologists recommend the upper limit be dropped still further to

1.5.

In 2005 in the US, a further 13m + sufferers were diagnosed and treated with thyroid hormone replacement.

Without T3, we die.

Medical science showed this over 40 years ago, yet the BTA, RCP et al. refuse to acknowledge this.

The proscription of T3 containing products is not only illogical, unethical and nonsensical; it is medically unreliable. Many counterexamples are found in living, testifying patients and in peer-reviewed medical science journals.

Again, the numerous counterexamples demonstrate the problem is political or legal, rather than medical.

I MUST stress the pernicious involvement of the RCP, BTA et al. as to the serious harm they cause through misleading and often incorrect statements, e.g.

"The British Thyroid Association recommends the use of sensitive and specific blood tests as the only method for the precise diagnosis of thyroid dysfunction and for the monitoring of treatment with approved medications" and also "Overwhelming evidence supports the use of Thyroxine (T4) alone in the treatment of hypothyroidism.

This is in direct conflict with the NHS guideline which states:

Thyroid dysfunction should NOT be diagnosed with blood tests alone – but rather by looking at the patients’ family history, symptoms and giving a full medical examination.

We do not recommend the prescribing of additional Tri-iodothyronine (T3) in any presently available formulation, including Armour thyroid, as it is inconsistent with normal physiology, has not been scientifically proven to be of any benefit to patients, and may be harmful."

There is no scientific proof that T4-only benefits patients. No studies or clinical trials have ever been done. To date, the RCP and BTA have not produced any of the "overwhelming evidence" – their statements are not medical evidence – only their opinion. This `opinion' is damaging patients’ lives and families as well as patients’ health.

The RCP, BTA et al. refuse to acknowledge Dr. Marshal Goldberg's paper which explains why there are failed diagnostics, i.e., false negative diagnostics.

Some references:

Goldberg's thesis is backed up by Refetoff [Refetoff S, Weiss RE, Usala SJ,

“The Syndromes of Resistance to Thyroid Hormone”, Endocrinology Review, 1993, 14(3):348-399]

Braverman [braverman LE, Ingbar SH, Keinwem S,

“Conversion of Thyroxine (T4) to Tri-iodothyronine (T3) in Athyreotic Human Subjects”, The J Clin Investigation, 1970, 49]

and their respective co-authors.

Goldberg points to other papers that claim to have observed failures in the T4-only therapy (1947 & 1954) as well as the paper by Baiser et al.:

Baisier, WV, Hertoghe, J, Beekhaut, W,

“Thyroid Insufficiency? Is Thyroxine the Only Valuable Drug?”

Journal of Nutritional and Environmental Medicine, Vol. 11, No. 3, Sept 2001, pp 159-166].

We have sent these papers to the RCP, BTA et al., on numerous occasions and asked them to take this scientific research into account, but they have refused.

Proper differential diagnostic protocol requires examination of all physical issues, as does the evidence-based medicine.

The RCP, BTA ignore low body temperature when trying to reach a diagnosis. Yet the top two causes for low body temperature are Hypothermia and Hypothyroidism (under-active thyroid).

The RCP & BTA refuse to accept the medical evidence available to them, or to amend their public guidance / statements accordingly. TPA, in refuting their claims, has adduced hundreds of references to which the attention of the RCP, BTA et al. has been drawn. They have never acknowledged receipt.

The President of the Royal College has asserted that the RCP “will not enter into any further correspondence regarding this matter”.

For the 250,000+ sufferers in the UK left without a proper diagnosis or correct treatment, this is an appalling statement, and is extremely frightening - this is why TPA is calling for a Public Enquiry to stop the terrible damage that is being caused.

Doctors are now openly telling their patients that they are afraid to go against such `guidance/statements' as they rightly fear being arraigned before the GMC (some doctors have already been) so will not give a diagnosis of hypothyroidism if their patients serum thyroid tests are within the so called `normal' reference interval.

This is even though their patient is presenting with numerous symptoms and signs), or they refuse to prescribe any form of T3, even though this is indicated for specific patients.

Instead, they fob off patients by prescribing many and varied medications including selective serotonin reuptake inhibitors (SSRIs) and antidepressants.

Most patients who are being denied a proper diagnosis are prescribed antidepressants; the majority of our 2280 + members have confirmed this.

The study by Irving Kirsch, Department of Psychology, University of Hull (25/02/2008) is the first to examine both published and unpublished evidence of the effectiveness of SSRIs which account for 16 million NHS prescriptions a year.

This study, the largest of its kind, concluded that antidepressants DO NOT WORK.

More than £291 million was spent on antidepressants in 2006, including nearly £120 million on SSRIs.

Depression, anxiety, memory loss and Alzheimer's disease all have an association with lower thyroid hormone levels. Research has shown that improvement can be achieved with thyroid hormone replacement therapy.

Further, those suffering symptoms of hypothyroidism habitually use more prescription drugs, especially for diabetes, cardiovascular disease and gastrointestinal conditions putting an even greater financial strain on the NHS and an overwhelming burden on the 250,000 sufferers in the UK.

Imprecise language causes and prolongs suffering

The BTA, RCP et al. give two completely physiologically different definitions of 'hypothyroidism'. This causes concern and confusion amongst doctors and patients alike.

· The RCP (London) defines `hypothyroidism as "the clinical consequences of insufficient secretion by the thyroid gland" - meaning 'hypothyroidism' is ONLY associated with the THYROID GLAND. This definition is the correct and narrow definition.

· The BTA however, define hypothyroidism as "the clinical consequences of insufficient levels of thyroid hormones in the body". This `broad' definition is associated with peripheral metabolism and peripheral cellular hormone reception, which produces insufficient thyroid hormones in the body.

If the first definition is correctly called "hypothyroidism", this can, hopefully, be treated with Levothyroxine sodium only - sometimes successfully.

But then the second definition should not be called `hypothyroidism'. The diagnosis should be `Clinical Euthyroidism', `Type 2 Hypothyroidism' or `Euthyroid Hypometabolism'.

Peripheral thyroid hormone deficiencies would then be treated with the active thyroid hormone replacement T3 – and NOT T4.

It appears that, to avoid suggesting T3 is needed, the diagnostics recommended for the symptoms of hypothyroidism focus only on the thyroid gland. When these symptoms continue, because they come from elsewhere, i.e. peripheral resistance to thyroid hormone at cellular level, they are not treated by medicine.

Instead, if a patient continues to complain of the symptoms of hypothyroidism when being treated with T4-only therapy, and has `normal' thyroid function test results, s/he is told "you are suffering from a functional somatoform disorder" or "your symptoms are non-specific”, "its old age" or “It must be something else, it’s not your thyroid”.

These continuing symptoms reduce the patient's ability to function or to resist the dangerous consequences of low thyroid - for example:.

serious mental problems,

seizures,

heart disease,

diabetes including misdiagnosis and complications,

constipation resulting in colon cancer,

And all female problems (due to high amounts of dangerous forms of oestrogen), including:

tumours,

fibroids,

ovarian cysts,

PMS,

endometriosis,

breast cancer,

miscarriage,

heavy periods and cramps,

anaemia,

elevated CPK,

elevated creatinine,

elevated transaminases,

hypercapnia,

bladder problems leading to infections,

hyperlipidaemia,

hypoglycaemia,

hyponatraemia,

hypoxia,

leukopaenia,

respiratory acidosis and others....

An attempt has been made by an MP previously who asked a `Question in the House' on behalf of TPA in an attempt to obtain clarification of the correct definition of hypothyroidism.

Ann Keen MP was asked to give an answer at that time, but her response was unsatisfactory, so clarification of this matter remains unresolved.

I would like you to take up this matter on behalf of myself and all those being left to suffer with symptoms of hypothyroidism and who are not being given the correct thyroid hormone to give them back their optimal health and once and for all bring this matter to a satisfactory conclusion? A correct definition of `hypothyroidism' is vital.

Repeated approaches to the DoH in the past have been systematically ignored other than to send one of their many `standard' letters that have not addressed the matter. Obfuscation around the definition of hypothyroidism is one of the main reasons quarter of a million + patients are improperly diagnosed and inadequately treated. Fixing this could save the NHS millions of pounds and the 250,000 + being left to suffer could enjoy much improved health.

The RCP and BTA should change their policy stance in their “guidance” on the diagnosis and management of hypothyroidism due to the great deal of scientific evidence adduced to support this demand for change, which they continually refuse to acknowledge. The Department of Health is allowing this to continue.

In short, the RCP, as a setter of medical standards to improve medical practice through self-regulation, appears to be "above the law" and a 'closed shop'. Their standards and quality are seen as implicit rather than explicit, with government and society trusting them to protect the public, so granting the profession considerable autonomy in the process. And there lies the problem…

Please will you help me and all sufferers of the symptoms of hypothyroidism by asking the Secretary of State for Health, who has the power to put an end to this appalling situation once and for all, and to stop this unnecessary suffering, to look into this matter?

A Public Enquiry is IMPERATIVE to give hypothyroid sufferers the support and the justice they deserve.

I look forward to hearing from you. Meanwhile, if you would like further information about this matter, please contact me.

Kind regards

Name - Address and Telephone Number.

[Guest guest]

Great work Sheila. I've just sent your text with a few more points of my

own to my local MP (Ed Vaizey - Oxfordshire). Will report on his response.

If we all flood them with these letters maybe they'll start thinking it's

less trouble to help us than to ignore us ...

Jackie Bushell

Below is a copy of the letter I have just sent to my MP (n ). In

case you would like to copy this and send to your MP, you can cut and paste

this as it is into a message to him/her, writing in his/her name and adding

your own name/address

[Guest guest]

The trouble is Jackie that the MP's forward any such letter sent

to them to the Secretary of State for Health, who passes it to one of his

minions to answer, who open a draw in the filing cabinet, extract the most appropriate

previously written response, get the Secretary to sign it, send it back to the

MP to show some 'action' has been taken and the MP then forwards it to his

constituent. This has been happening for the past umpteen years, whichever

government is in power and things never, ever move forward.

What the DoH will do is to cop out of taking any responsibility

right from the start by telling you that the Royal College of Physician's and

the British Thyroid Association are independent of the Government and that the DoH

has no plans to ask the RCP to withdraw their clinical guidelines for the

treatment of this medical condition. You will likely be told that the

Department cannot intervene regarding blood test results or treatment, and that

the BTA, and Association of Clinical Biochemistry and the BTF have published

guidelines for the use of thyroid function tests - leading you and doctors to

believe that we all must follow these guidelines. What you need to respond back

with is that the DoH have made it absolutely clear that doctors can follow

whatever thyroid guidelines they wish, even if they have been written in

another country so long as a doctor can explain why he has chosen to use those

particular guidelines.

They will go on to give you the usual rubbish about 'Armour

Thyroid' not being approved by NICE - and then, blow me down, considering they

have already told you that the BTA independent of the government, will go on to

quote the misleading and incorrect information extracted from the BTA

Statements on Armour versus T4-only therapy that " …there is no

evidence of a beneficial effect….compared to unitary therapy with

thyroxine, and we believe that the findings so far do not offer any advantage… "

Either the DoH are independent of the BTA or they are not - This, the DoH

accept without any of the BTA statements being backed with any references to

the scientific evidence - so the DoH are accepting whatever the BTA, RCP et al.

opinions are, as FACT, and thereby causing great distress for many

sufferers by not asking the BTA/RCP to qualify their statements.

This cannot be allowed, and we should point out that BECAUSE the

BTA and RCP are independent organisations from the DoH, this matter now calls

for even deeper investigation as to why the DoH are not addressing the problem

into the reason why so much suffering is being allowed to continue, and why the

DoH does nothing to help the quarter of a million people being allowed to continue

to suffer by organisations (independent of the Government) writing

guidelines/guidance/statements telling doctors they should give ALL sufferers of

the symptoms of hypothyroidism, the WRONG thyroid hormone replacement. For

those sufferers who have peripheral thyroid hormone resistance at the cellular

level, they need the active thyroid hormone T3, which has been virtually banned

by both the BTA and RCP.

Sorry, I could go on….. but you need to be prepared for

such idiotic responses from the Department of Health and not allow such

comments to go unchallenged - it's time for a change, a great change and if this

means nattering on and on and on, then this is what we do. Change is ONLY going

to happen by patient organisations such as TPA challenging them on every move

and demanding a Public Enquiry.

Do we have a multi-millionaire amongst us who would willingly put

up the money to take these organisations to Court, because if ever our case did

get to Court, I KNOW we have so much scientific evidence on our side that we

would win. And YES, I am really serious here.

luv - Sheila

Great work Sheila. I've just sent your text

with a few more points of my

own to my local MP (Ed Vaizey - Oxfordshire). Will report on his response.

If we all flood them with these letters maybe they'll start thinking it's

less trouble to help us than to ignore us ...

Jackie Bushell

Below is a copy of the letter I have just sent to my MP (n ). In

case you would like to copy this and send to your MP, you can cut and paste

this as it is into a message to him/her, writing in his/her name and adding

your own name/address

[Guest guest]

Hi Sheila, if only I was a millionaire .... I agree with you totally about effective action through a court case. I've been thinking this for a while and thinking that there must be good lawyers experienced in health that take on cases on a 'no win, no fee basis'.????I don't think that's the correct technical term - but I'm sure you know what I mean - basically they don't charge and take fees from court costs.All best Alison> Do we have a multi-millionaire amongst us who would willingly put up the> money to take these organisations to Court, because if ever our case did get> to Court, I KNOW we have so much scientific evidence on our side that we> would win. And YES, I am really serious here.> > luv - Sheila>

[Guest guest]

Thanks for this Glynis, I have saved this document because I

need to go through it closely to see whether the changes you have made are

acceptable before changing what I have written. This will be done during the

course of the next few days, but at present, I am composing a response an

important letter (that has a deadline) to the MHRA which must take priority.

Thanks for your feedback and for going through my letter in such

detail.

Luv - Sheila

Hi Sheila,

I've tinkered

around with the letter a little to give it more impact. You can

delete it if you don't like it.

I've tried to

take out as much repeated text as possible and broken it down into more

paragraphs and bullet pointed lists. It makes it more dramatic but still

keeps the logic and professionalism of your letter.

See what you

think.

Glynis

[Guest guest]

The problem with taking on the RCP, BTA et al. is that they are

backed by Big Pharma who will splash millions of pounds protecting their

interests, and no lawyer or barrister will take this on with a no win no fee

basis. I have a couple of lawyers names and addresses who are big in this field

that I will be writing to, when I have a moment, to get their feedback.

What I do need is the names and addresses of any of our members who have been

refused either synthetic T3 or natural thyroid extract by their doctor because

their local Primary Care Trust has refused to fund these, and who were left on

levothyroxine-only therapy which caused them to have continuing symptoms of

hypothyroidism. If these patients then regained their health treating their

condition themselves through purchasing synthetic T3 or natural thyroid extract

and were willing to give evidence regarding this, and we could get four or five

sufferers from particular PCT's, then I do have one Medical lawyer who would be

prepared to take these PCT's on.

Luv - Sheil

Hi

Sheila, if only I was a millionaire .... I agree with you totally about

effective action through a court case. I've been thinking this for a while and

thinking that there must be good lawyers experienced in health that take on

cases on a 'no win, no fee basis'.????

I

don't think that's the correct technical term - but I'm sure you know what I

mean - basically they don't charge and take fees from court costs.

All

best Alison

_,_._,___

[Guest guest]

HI SHEILA and all,

Apart from the health costs that escalate through not having correct tests and

treatment how much is it costing with all the complaints procedures, and I am

going to include this with your letter.

I will be posting mine in the ROYAL MAIL in case the emails get too loaded in

their inbox and not looked at.

Kathleen

>

>

> Below is a copy of the letter I have just sent to my MP (n ).

> In case you would like to copy this and send to your MP, you can cut and

> paste this as it is into a message to him/her, writing in his/her name

> and adding your own name/address and telephone number. It is ONLY by

> keeping on at our MP's and giving them the true facts that one day, they

> will wake up and realise that what we have been telling them for years

> has fallen on the governments deaf ears and they will want a Public

> Enquiry as much as we need one. The more MP's who receive such messages

> the more they are likely to discuss this problem amongst themselves and

> then bring this to the attention of the Secretary of State.

>

> If you are unsure who your MP is, or you have no idea where to write to,

> please go here http://www.writetothem.com/ <http://www.writetothem.com/>

> and type in your Post Code. The name of your MP will be shown and you

> can write your own letter on the page that comes up, or copy and paste

> the letter below, and it will be forwarded direct.

>

> Luv - Sheila

>

> __________________________________________

[Guest guest]

Just thought I'd point out what it says on the " Write to Them " page i.e.

" Use your own words (new window); we block copy and pasted identical messages "

So, it looks like individual messages need to be created ensuring Sheila's information is still contained within.

Jackie x

[Guest guest]

Sheila, I've been refused all diagnosis and treatment for hypothyroidism and hypoadrenalism on NHS. My local endocrinologist has refused to see me twice now. (I have written evidence to support this). My GP will not treat me.As far as I can tell, my GP never even did T4 or T3 tests. I was just sent directly to the ME/CFS specialist - even though they require T4, T3 tests to be completed. I asked my GP several times to do the tests and I'm pretty sure, she's just lied to me. I'm now self-medicating - T3 and hydrocortisone.As far as I'm concerned, my adrenals have been damaged and my health compromised through lack of diagnosis.I've also lost the standard of living I once had - so - I would love to give evidence  if the opportunity arose.All best, Alison>> The problem with taking on the RCP, BTA et al. is that they are backed by> _,_._,___>

[Guest guest]

Hi Alison, what you need to do is to write a letter to your GP

asking for a date, time and place that could be made available for you to see

your Medical Notes. You are entitled to see everything that is in your medical

notes, but you do have to give notice and the surgery can make a charge. Send a

copy of your letter to your local Primary Care Trust so they are aware of this,

and make this plain on your letter of request to the surgery as well. If you

cannot afford that, then just ask for a copy of all your blood tests that have

been done over the past couple of years, together with the reference range for

each of the tests done - and when you receive this, post them on the forum so

we can help with their interpretation. If there are no results of tests for TSH

free T4, free T3 or tests to see whether you have antibodies to your thyroid,

then you will know that your GP has never arranged for these to be done, and

can then question why. Do this by way of letter. When ever anything gets as

serious as this, ALWAYS write letters and ALWAYS send a copy to the Head of

Practice and ALWAYS keep copies yourself in case you need these at a later

date.

You also need to find out WHY your local endocrinologist has

refused to see you, and if this was because of the content of letters of

referral from your GP then you need to get copies of these referral letters.

Again, doctors cannot withhold these from you under the Date Protection Act,

and the Freedom of Information Act.

Luv - Sheila

Sheila,

I've been refused all diagnosis and treatment for hypothyroidism and

hypoadrenalism on NHS. My local endocrinologist has refused to see me twice

now. (I have written evidence to support this). My GP will not treat me.

As

far as I can tell, my GP never even did T4 or T3 tests. I was just sent

directly to the ME/CFS specialist - even though they require T4, T3 tests to be

completed. I asked my GP several times to do the tests and I'm pretty sure,

she's just lied to me. I'm now self-medicating - T3 and hydrocortisone.

As

far as I'm concerned, my adrenals have been damaged and my health compromised

through lack of diagnosis.

I've

also lost the standard of living I once had - so - I would love to give

evidence if the opportunity arose.

All

best, Alison

[Guest guest]

…and there lies the rub . They do make

representations to the Secretary of State and it is at that step that

everything stops, and nothing gets done, apart from sending you a letter that

explains all about the BTA/RCP guidelines etc but that you will find has NOT

answered one single question you have asked. You need to go through the letter

you sent and the response you eventually receive to see whether the two

actually marry up, they will not, and you will be left feeling you have got

nowhere. This is where we have to send it back, highlighting the parts in your

letter that have not been addressed and asking for them to be addressed. This

is the only way we are going to move forward.

Luv - Sheila

Hi

I sent letter to Fiona Bruce MP and had a reply as follows:

'I confirm that I will make the representations you have requested to the

Secretary of State'

[Guest guest]

Correct Jackie, I should have pointed this out, but I guess I

hoped our members would see this statement too. You do need to personalise the

letter before sending it to your MP.

For those who have not yet sent off their letter, hold back for

a while because I am writing an 'Important Note' to draw certain points to the

attention of the MP and will send this later. Even if you have already sent

your letter, you can still send this 'Important Note' and ask him/her to take

account of the information contained therein.

Luv - Sheila

Just thought I'd

point out what it says on the " Write to Them " page i.e.

" Use your

own words (new window); we block copy and pasted identical messages "

So, it looks like individual messages need to be

created ensuring Sheila's information is still contained within.

Jackie x

[Guest guest]

Thanks for your thoughts Ange. That's fantastic that you've managed to get back to working. I'm becoming increasingly resigned to living on a v limited income - as I've been unable to work for the past 5 years (but then I didn't know that my GP hadn't tested my thyroids!!). Anyway at the moment I'll just be glad to get some of my health back. How did your GP diagnose hypothyroidism - did she accept your private tests or did she do the standard NHS tests?How long did your recovery take?Thanks again. Best wishes Alison>> Hi Alison,> Just wanted to say that I was also given the lovely label of ME/CFS which>

[Guest guest]

Yes there is a charge for copies. xx

Thanks for this Sheila, I have got my blood tests and I'll scan them and post them in files for further advise- it'll take a little while as I'm still only doing a very small amount each day - and avoiding any stress!

[Ed]