Re: Has our topic been HACKED?

[Guest guest]

I had two posts (now I am glad I did) but I have no idea how

long they will be there before the Moderators are told the 2content is

inappropriate " . The content is ONLY inappropriate to the BTA and RCP. I

have pasted the two messages you posted on the original thread below Stevie (I have

a suspicious nature and decided to keep copies of every message posted and now

glad I did). You can go and post them again onto all the threads with 'thyroid'

'thyroxine' 'hypothyroidism' in the subject heading and give a rating of 5

stars.

http://spendingchallenge.hm-treasury.gov.uk/@@search?text=hypothyroidism

http://spendingchallenge.hm-treasury.gov.uk/@@search?text=thyroxine

Posted

by sblake

July 13, 2010 at 12:31

I am

appalled at the management of hypothyroidism, the ignorance is unbelievable, it

is one of the most underestimated conditions. My own GP did not even now about

the conversion of T4 to T3, i found that shocking. A badly managed thyroid,

cost a fortune B12 injections, fybogel, statins, even to the cost of a

mastectomy, gall bladder removel, the list is endless, all of which are proven

that the cause is badley managed thyroid. Then dont forget they cant work

because they feel so ill. For goodness sake, lets bring this into the 2oth

century, its not rocket science to know that some people will need added T3

whether its synthetic or natural dessicated thyroid hormone.

Flag

this comment as inappropriate

Posted

by sblake

July 13, 2010 at 19:44

After

watching our mother in misery for the last 25yrs with hypothyroid, my sister

and i had our own private blood tests, sad isn't it that doctors don't even

want to test you for it. Yes we both tested positive, hypothyroid with

hashimoto. the thought of the future as it stands poorly tested ie no FT4 or

FT3 and only one choice of medication, its barbaric. If we have to self treat

we will, we have seen the carnage it can cause. This country used to lead in

health care, what happened, even the patients know more about their condition

than their doctors.

From: thyroid treatment

[mailto:thyroid treatment ] On Behalf Of stevieblake@...

Sent: 14 July 2010 22:20

thyroid treatment

Subject: Re: Has our topic been HACKED?

Hi,Sheila,

I have checked this link, i have posted two comments in the last two days, am i

being a bit dense, i cant find my posts, am i confused, did you have another

one on their and i posted that one. If you had only this one, my posts have

gone.

love stevie

>

> I think they just changed the TITLE. Here is the link: http://spendingchallenge.hm-treasury.gov.uk/how-can-we-rethink-public-services-to-deliver-more-for-less/inappropriate-treatment-for-hypothyroidism-should-be-investigated

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3003 - Release Date: 07/13/10

18:36:00

[Guest guest]

I absoluteluy agree with this Lilian - In no way is T3 banned and if we

keep saying it is, they are going to think we are over dramatising.

Doctors are being encouraged by the RCP, BTA NOT to prescribe any T3

thyroid hormone containing product and that ONLY accredited

endocrinologists should either recommend or prescribe it in those 'rare'

cases where it may be needed. It is a virtual ban, though I would rather

use the word boycott - which is more realistic. I think in future, we

take out the word 'banned'. Natural thyroid extract (i.e. Nature Throid,

Westhroid, Armour Thyroid and Erfa Thyroid) are all legal and available

medications which the MHRA has stated doctors CAN prescribe for those

patients who do not do well on levothyroxine only, knowing they must

take full responsibility for this as they are not licensed. Synthetic T3

on the other hand is a fully oegal and olicensed drug in the BNF.

Luv - Sheila

>

> I would query one thing about what has been saying. At the moment

T3 is not actually banned it is very much discouraged - or they have

suggested banning it. I would hate a doctor who is prescribing it to

read it and suddenly think he shouldn't because it is banned.

>

> Also Armour is not actually banned, it is just not licensed here. If

T3 and Armour were banned would we not have more difficulty in getting

it over the internet.

>

> The effect is as if it were banned. As they are not banned, yet

another reason to question why these organisations do not want doctors

to prescribe it when necessary.

>

> We do not want to make it a self fulfilling prophesy (if that is the

expression).

>

> Lilian

>

[Guest guest]

Here you go, PROOF!!!

Page saved to my computer at on 13/07/2001 at 16:58 which confirms that the

posting times shown here are correct, whereas the times now displayed on the

website have been altered.

Tracey

----------------------------------------

Current rating 4.90697674419

Average score : 4.9

Based on : 43 votes

Posted by yvonne July 12, 2010 at 23:00

At last a sensible well thought out solution! Many people have bandied about

ideas for reducing costs without addressing the real issues. Simply making those

with Hypothyroidism pay for any other proscription other than Levothyroxine

really does not help matters unless the cause of the additional prescriptions is

dealt with. As many sufferers have been inadequately treated by their GP's, many

of the additional drugs proscribed are indeed indirectly as a result of

incorrect thyroid levels. The financial implications of addressing this one

issue is potentially huge for both reducing NHS costs and of course benefit

costs for those persons who through ill health by misdiagnosis are unable at

present to work. Please please do something to help resolve this situation.

Posted by Cazza July 13, 2010 at 11:05

This is so right, something needs doing now, far too many people are suffering

in this country and all because of incorrect or outdated information regarding

TSH blood tests and treatments for hypothyroid sufferers. Some are undertreated

because GPs do not understand the results of bloods tests and also do not

understand how to treat. They also do not know about alternatives to synthetic

thyroxine which they should. Our NHS needs to sort this out it is costing us

more by treating all the symptoms with lots of other drugs instead of getting it

right.

Posted by albinomamma July 13, 2010 at 11:06

Please take this all on board. many gps and specialists appear to be

disinterested in what their patients tell them. the idea that they will now be

given the power to decide exactly what their patients will receive in secondary

treatment is appalling. the vast majority seem happy to keep people very sick

who could simply and CHEAPLY be given their lives back. they could also look at

'normal' levels of B12. they don't listen.......

Posted by hmsmith July 13, 2010 at 11:25

A very well thought out and sensible way to reduce costs.

Posted by caz320ml July 13, 2010 at 11:26

I was unable to work when treated by the NHS, and told nothing wrong with my

thyroid. Of course they did not know what was wrong and I should go away and

make the best of it. What I did was find Drs who had the same symptoms and I now

self treat and am working.

Posted by rvialls July 13, 2010 at 11:29

I am a scientist with a research interest in endocrine function in horses. As a

result I read a lot of human medical research (the two species being very

similar in many respects), and in particular endocrinology papers and policy

documents. I am appalled at the poor level of scientific understanding of

thyroid disease in humans and the poor guidance re diagnosis and treatment that

is currently in place. The statement that hypothyroidism can only be diagnosed

when blood tests are outside the reference range is rubbish from a statistical

standpoint. Firstly, the reference ranges used in the UK are far too wide

(possibly suggesting that the reference population is contaminated with

undiagnosed thyroid disease cases - which is highly likely given the poor

approach to diagnosis and the high prevelance of thyroid disease in the

population as a whole). Secondly, the natural variation in thyroid hormone

levels in an individual patient is tiny compared to the variation between

individuals. That means that the reference ranges tend to be large but an

individual only needs a small change in hormone level to be ill. As such, blood

tests are never going to be sensitive enough on their own to pick up the milder

forms of thyroid disease. I also have personal experience of this. I developed

hypothyroidism a few years ago but was told that my blood tests were 'normal'

(that in itself is statistically incorrect as you cannot state that results are

'normal', only that they are within the reference range). I had to fight (and

eventually go private) to get a diagnosis. Even then, the approach to treatment

was to supplement hormones until I was 'within the normal range'. The doctors

were happy so long as I was just above the bottom of the reference range, but

that left me still feeling very ill. I have finally got the treatment I need,

and my thyroid hormone levels are now towards the top of the reference range.

The current treatment guidelines would not have got me there. As someone with

expert knowledge in this field, I was able to understand the problem and argue

my case - but tens of thousands of others are not in that position. We

desperately need an injection of science into the current superstition and dogma

surrounding the diagnosis and treament of thyroid disease. The savings to the

exchequer are potentially massive - not to mention the boost to the economy of

getting a lot of ill people back on their feet.

Posted by topcat July 13, 2010 at 11:31

Good way to save money

Posted by jansong July 13, 2010 at 11:57

makes sense for patients and health service alike.

Posted by CCarling July 13, 2010 at 12:04

Self-treatment is the only way that patients, at the moment, can maintain any

semblance of a 'normal, healthy' life ... this diabolical mis-treatment and

brushing-under-the-carpet of hypothyroidism must be addressed; the financial

savings to the country would be phenomenal.

Posted by dugge July 13, 2010 at 12:08

There has been a long time need for all of this to happen " Now " is that time to

do so.

Posted by Kaye July 13, 2010 at 12:11

Finally someone is making sensible suggestions !! The poor understanding of

thyroid illness among doctors and even endocrinologists and their blind reliance

on biochemical results in this country is appalling. Millions of hypothyroid

people suffer unnecessarily, either because their doctors will not diagnose them

correctly or, once diagnosed, they receive insufficient treatment which does not

alleviate their symptoms. This problem has been swept under the carpet for long

enough. Government - please listen !

Posted by bilbo July 13, 2010 at 12:20

STOP the Thyroid madness. This article outlines many of the issues and waste of

money by the NHS, BMA, GPs and others who fai paitents. Save money,AND improve

the soci-economic fabric of our society through the suggestion outlined on this

single issue.

Posted by Magg1e July 13, 2010 at 12:23

I agree that many people are suffering due to inadequate blood tests and the

fact that GPs accept 'in normal range' results as gospel when they can quite

clearly see signs of hypothyroidism. I have personal experience of this having

had signs/symptoms for 5 years plus but the annual blood test said 'normal' and

so another year of lethargy, tiredness and weight gain. Only when I confronted

my GP with printouts from the internet did I get an antibody test. I was then

confirmed as having a thyroid problem. Having visited an endocrinologist I have

now been diagnosed with Hashimotos Disease, a goitre and my cortisol test result

was lowish and am now having further adrenal tests. All this costs money and

would have been unnecessary had my GP had a proper understanding of the blood

tests and the range was altered as in some other countries. Prozac is handed out

to thyroid sufferers, which only serves to aggravate the thyroid. How many

people are on anti-depressants when they could quite easily and cheaply be

treated with the correct thyroid medication?

Posted by sblake July 13, 2010 at 12:31

I am appalled at the management of hypothyroidism, the ignorance is

unbelievable, it is one of the most underestimated conditions. My own GP did not

even now about the conversion of T4 to T3, i found that shocking. A badly

managed thyroid, cost a fortune B12 injections, fybogel, statins, even to the

cost of a mastectomy, gall bladder removel, the list is endless, all of which

are proven that the cause is badley managed thyroid. Then dont forget they cant

work because they feel so ill. For goodness sake, lets bring this into the 2oth

century, its not rocket science to know that some people will need added T3

whether its synthetic or natural dessicated thyroid hormone.

Posted by steveivell July 13, 2010 at 12:45

The current treatment for hypothyroidism by GP's and specialists alike is very

poor. T3 treatment is the future and its about time doctors and politicians woke

up realised what is blindingly obvious. The alternative is stick your head in

the sand and hope it will all go away.......well it wont. My wife has lost her

£45k per year job, company car, private health etc. as a result of her poor

treatment and is now on benefit. How can this be good policy?? Come on

guys......its time to sort things out properly.

Posted by snake July 13, 2010 at 12:46

I was previously diagnosed with ME/CFS and despite doing all the right things in

Pacing terms, I suffered a persistent annual decline. In 2006 my condition took

a different form and I suffered 3 days in bed after an afternoon out. All I was

told was " That'll be the ME " and I didn't get any further tests. I had no choice

but see a private retired GP for diagnosis and treatment because of the severity

of my illness. After some time, I ended up taking Armour Thyroid and T3 tablets,

but yet the NHS didn't want to believe I had a thyroid problem. The only way of

me getting official NHS diagnosis was to stop the tablets that were working for

a month and get a blood test. Thakfully my TSH was raised and I could get

Levothyroxine prescribed and get an endocrinologist referral. However I have not

found Levothyroxine to be as effective as Armour Thryroid and it hasn't been

possible to get a dose that matched the functioning when I was using Armour. A

year later I finally have an NHS prescription for T3 and my Levothyroxine is

reduced. This has been a good step in the right direction although my

functioning is still not back to where it was before. I know I have to be very

assertive in pushing for maximum treatment possible. I think due to the needless

controversies doctors are frightened to treat people. There has got to be some

luck in my situation after the past 4 years. Yet even now, I don't have full

peace of mind that I can match the functioning that was possible on a

self-funding basis. Not everybody could afford to take another 18 months out

(not the best set of circumstances for me either starting from scratch) but it

is the only way for me to avoid self-funding for the next 40 years. There are

too many people having to self-fund or part self-fund essential medication, when

the Levothyroxine isn't fully alleviating their symptoms. There are alternatives

available and I wish more doctors could agree that some people need more help. I

don't think there has to be much deviation in the reference range for this to

make you very ill and doctors need to understand the everyday limitations of

being so ill with low thyroid function and the implications of all the symptoms.

I have had a lot of medications prescribed to mask the symptoms of untreated

thyroid, in particular pain medications.

Posted by argosY July 13, 2010 at 12:46

The British Thyroid Association and the linked organisations should be made

accountable with immediate effect. At present they evade responsibility yet are

able to oppress the medical profession, with the consequence that sufferers from

hypothyroidism and its mimics all too frequently do not receive the attention

and treatment they need.

Posted by WSKeen July 13, 2010 at 12:48

Excellent suggestions. Regretfully, I am now a classic case of a " financial

burden " on the government purely because the NHS will not recognise and treat my

blindingly obvious health problems. For the last 10 years my health has

gradually deteriorated. Having been dismissed time and again by the NHS I sought

private medical assistance and was diagnosed by three independent specialists

with long standing hypothyroidism and hypoadrenalism. However, despite thousands

of pounds worth of tests and consultations, my NHS GP is not able to recognise

this diagnosis and treat me accordingly because my TSH is 3.9. In 2007 I was

forced to give up my full time career that involved a lot of driving when my

health became worse. Since then I have been mostly housebound but have managed

to stay off benefits, and just about keep my head above water, by working as a

self employed business consultant from home. Since March this year I became so

ill with " Chronic Fatigue Syndrome " (which is the only " diagnosis " my GP can

certify) that I have been mostly bedridden and have had to relinquish my self

employed contracts. So, I now live off benefits (ESA Support Group) and get

Disability Living Allowance as I cannot do any of the normal tasks like

shopping, cooking, cleaning, bathing and dressing. Last week it was confirmed

that I am also now borderline diabetic. If I was properly diagnosed and treated

by the NHS I could be out there working, financially independent and

contributing to society with my skill set. Moreover, I could actually be

experiencing a life worth living rather than, at the age of 40, feeling like I

am trapped in a body that will never function properly again. The diagnosis and

treatment of hypothyroidism in the UK is beyond comprehension. These ridiculous

TSH reference ranges and the NHS policy to use them as confirmation of this

condition is costing our country untold and totally avoidable money in benefits,

wasted skills and careers cut short. Such simple changes as suggested above

would reap such incredible results. I implore the Government – do it…. do it

now!

Posted by nickrwym July 13, 2010 at 12:56

Yes please, I have resistance to thyroid hormone that does not show up on a

standard TSH test. I was able to get help and get my health back thanks to the

resources on the internet and this saved my business from going bust. If I had

left it to the NHS I would be on benefits by now and a drain on the tax payer,

as it is my business is generating £300k a year for the tax fund. Please get

these Drs trained properly Nickk

Posted by donkey1 July 13, 2010 at 12:57

! too am a sufferer of poorly treated hypothyroidism .i was given rai for

hyprthyroidism i returned to my consultant 6 weeks later feeling very unwell

only to be told it can,t be anything to do with the rai ther must be somethig

else wrong with you! ! am a midwife and knew i was hypothyroid. this so called

cosultant didnt examine me, no pulse body temperature or blood pressure the

least he should have done when i returned home i took my temperature it was

34.9.a sure sign of hypothyroidism i too self medicate now as the

endOcrinologist of whom i have seen quite a few are all consultants whose

speciality is diabetes we are the forgotten disease. i am not a blood test i am

a human being measuring blood thyroid hormone levels is an impressise science as

it cannot tell you what is happening at the cellular level .it should be used

only as a guide ,the clinical picture is what counts .doctors no longer have

clinical skiils they rely on computers and blood tests.this is where the wasted

time and money is as we keep returning to say we are unwell only then to be

treated with a cheap inferior product we are given synthetic t4 (thyroxine) when

we need all the thyroid hormones to function properlt this t1,t2,t3.t4 and

calcitonin for our bones this can only be obtained from natural desicated

thyroid hormone.We are being denied adequate treatment also because the big drug

companies will lose out as it is naturally occuring in the form of dried pig

thyroid not requiring manufacture .THIS PROBABLY THE BIGGEST SCANDAL IN THE NHS

THIS NEEDS TO BE STOPPED NOW.The bma are also involved in this scenario as they

refuse to accept resposibility and should be investigated for their ties to big

pharma.This cover up must be investigated by a public enquiry as so many

sufferers and their families are affected

Posted by sevans July 13, 2010 at 13:16

I have spent the past 12 yrs suffering many symptoms which were all individually

medicated - including SSRI's on 3 occasions, statins - because despite having an

healthy active lifestyle my cholesterol was 8.6! I have had to have a

hysterectomy because of fibroids. I have had sickness off work on many occasions

due to tiredness/depression/fatigue. I have been given HRT and told that all my

symptoms were due to my age 45 and I would have to put up with it. I have been

tested for sleep apnoea and then told to lose weight (my weight went from 10.5

to 12 within 7 months). I could not lose weight and as my energy levels declined

further as did my ability to exercise. I was sent to a gynae endocrinoligist by

the GP who was still pushing me down the FFF route (female/forties/fifties - got

to be menapause) and he said that my symptoms were highly suggestive of thyroid

issues and not menapause - however, he could do no more as I would need to see a

general endo;he did do bloods and despite putting down for T3 the labs still did

not test them as my TSH was within range - THEY MAY WELL BE BUT THAT DOES NOT

SHOW IF I AM CONVERTING THE T4 TO T3 - the active hormone. I have had many blood

tests and been told that my TSH is within range - despite family history and

that my TSH is gradually going up - BUT MY SYMPTOMS are still the same and

getting worse. I am now on 25mgs of Levothyroxin after all this time and I still

do not know yet whether they will get me back to good health adn then if it is

because the T4 is not converting to T3 the active hormone - I WILL HAVE A BATTLE

GETTING T3 OR INDEED NATURAL DESSICATED THYROID WHICH HAS ALL THE THYROID

HORMONES IN NOT JUST T4 - BECAUSE OF THE BRITISH THYROID ASSOCIATION ET AL

STOPPING US FROM GETTING THE RIGHT MEDS - WHICH WERE INTERESTINGLY WORKING FOR

PEOPLE YRS AGO BUT THEN STOPPED WHEN IT WAS DECIDED THAT PEOPLE SHOULD ONLY BE

PRESCRIBED SYNTHETIC THYROID DRUGS. WE ARE ALL SUFFERING BECAUSE OF THIS!

Posted by sabinj July 13, 2010 at 13:18

FINALLY. A statement that says it all for those of us who are suffering so

badly. Brain fog stopped me working as a psychotherapist over 20 years ago and

the fibromyalgia keeps me almost housebound. My GP practice thinks I'm neurotic

and barely has time for me anymore. I do so hope that new guidelines will help

me and {probably thoousands of] others to return to 'normal' pain free and fully

cognitive living.

Posted by SamJL July 13, 2010 at 13:20

An excellent explanation of what is surely a necessity. I am one of the

thousands of people whose deteriorating health problems are not recognised or

treated by the NHS. I had to give up my job,was unable to look after my youngest

child or even manage normal daily activities because my blood results fell

within the 'normal range' so my GP refused to accept I have a thyroid problem. I

saw a private doctor who diagnosed hypothyroidism and started me on a trial of

thyroid medication. For the first time in 18 months I have no pain, I can

exercise, I'am beginning to get my life back and looking forward to returning to

work. Despite this my GP wants me to stop the medication and is refusing to have

my blood tests in my notes! They were happy to spend thousands of pounds in the

previous years on blood tests, rheumatology consultations,pain clinic,an MRI

scan,an ultrasound,physiotherapy and accupuncture ... none of which helped me.

On the NHS I got a diagnosis of Fibromyalgia and I'm expected to suffer in

silence and continue to develop the long term complications of hypothyroidism.

Something has to change and soon!

Posted by strummer61 July 13, 2010 at 13:30

It's a great pity that the duty of GPs appears to be peddling the latest

Anti-depressant or Anti-inflammatory, rather than finding the route cause.

Posted by caz_baker July 13, 2010 at 13:52

Thank you! I've spent the last 18mths feeling like a pin cushion as i keep going

back to the GP with the same symptoms i had when i was first diagnosed with

hypothyroidism. This so called 'normal' result from a reference range is

ridiculous! I was told (by the receptionist), my levels were normal and then a

month later had my dosage of levothyroxine doubled becuase i was in such a bad

way, surprise surprise after another blood test 2 months afterwards I was told

by another receptionist (never a doctor), 'normal'. If my blood tests weren't

affected by this increase in T4 then maybe it's not T4 that is needed in every

case...? When this problem is finally sufficiently addressed then sufferers can

have the correct tests, diagnosis, and prescriptions. Then fewer hours will be

spend by gp's shuffling us out of their surgerys. Surely a correct diagnosis and

treatment is worthwhile if it then saves time and money within the nhs? Not only

that but more importantly so many people will gain their lives back!

Posted by TBlack July 13, 2010 at 13:55

I would urge the government to take note of this excellent proposal which would

save both cost and unnecessary suffering.

Posted by Briony July 13, 2010 at 13:57

As a cost saver, this is a great idea. Levothyroxin, Liiothyronine and other

T4/T3 preparations should be classed as 'free drugs' not all of a hypothyroid

patients prescriptions should be free. Recognition of Hypothyroidism and

Auto-Immune Thyroid Disease before the TSH is elevated above 10 would also save

the NHS many unnecessary prescriptions and treatments not to mention the

investigations!

Posted by freeman9007 July 13, 2010 at 14:03

I was left untreated and unable to function due to the flawed TSH blood test. It

was not until I obtained information myself that I found out about T3

(Tertroxin) and after pleading and begging managed to get some, despite the

Endo-Prat considering it a placebo. My life improved overnight after 20 years of

disability. There are hundreds of thousands of people not correctly diagnosed

and suffering un-necessary, unable to work and dependent on government benefit.

This could be remedied by correct diagnosis and treatment.

Posted by Snakjak July 13, 2010 at 14:17

We must all trust the professionals after all we hire to do their job

appropriately and well. But if you never question or verify, how can you be

assured that the doctor is doing the best that he or she can? Virtually all

experts are specialists. They work hard solving the problems that they know

best, and cannot be expected to be well versed in every detail. many people have

stories about a doctor and treatment they trusted for years, that had been given

bad information and completely dismissed. Those are tragedies, but we patients

often simply label the doctor as bad or incompetent... which is unfair. Those

doctors no doubt did many things extremely well, but they could not possibly do

everything...medicine is too complex. You have to be the expert on YOU. You need

to get as much information as you can...consult your doctor...or other trusted

sources... and be responsible for your health. A lot of people are learning that

complete dependence on a single doctor to make all health decisions leads to

sometimes tragic disappointments. Be a team, ask questions, understand the

answers, participate in your healthcare. Doctors, and all others in health care,

are only human, and they can only do so much, and they can overlook things or

make mistakes... so be realistic about what your doctor can do. Help prevent

those errors...for your own sake.

Posted by linedancer July 13, 2010 at 14:27

A public enquiry is long overdue. Since being diagnosed with this condition I

have been amazed at the lack of knowledge and understanding shown by many

doctors. Hypothyroidism seems to be the last condition to be considered when a

patient presents with certain symptoms - indeed, in many instances it is the

patient themselves who suggests that they might be hypothyroid! Then there is

the shortcomings in treatment. As already mentioned, many GPs do not understand

the test results and rely on the hospital labs to " flag " abnormal readings.

These abnormalities vary from lab to lab, so again, it is a matter of luck if

the patient gets treated properly or if at all. If Hypothyroid patients are

regarded as individuals (which should be the standard)and treated with the

appropriate hormone, whether it be T4, T4/T3 or Natural Thyroid extract, then

many other illnesses and conditions can be avoided. This would represent a great

saving to the NHS - but a drop in profits for the pharmaceutical companies!

Let's have this enquiry as a matter of great urgency and have as many patients

and patient groups allowed to participate.

Posted by Shreddie July 13, 2010 at 14:28

exactly what we need. Better care AND better resource management? Surely a dream

solution

Posted by whatamess July 13, 2010 at 15:03

As the partner of a long term Graves and Hashimotos Thyroid patient who entirely

as a result of appalling lack of diagnosis and correct treatment over many years

now has a plethora of other conditions all triggered by the above who had to

give up work age 55 and rely on benefits i am disgusted by the BTA and Royal

College of Physicians whose refusal to face the need for T3 or Armour along with

test result parameters out of step with the entire rest of the world is causing

untold misery and illhealth along with patients being on long term benefits

unable to work when they could be well

Posted by mangomaxxx July 13, 2010 at 15:06

I had to leave work as my health deteriorated after I was diagnosed hypothyroid.

Levothyroxine did not help, infact I became toxic due to untreated adrenals. My

GP refused to do anything other than increase the dose is leave it where it was.

I was so ill and decided to seek out the help of a private (non-national health)

specialist. I'm better now and taking natural dessicated thyroid T3, which I

purchase myself from abroad. Why won't the NHS help me. If I was offered a

treatment on the NHS and under the supervision of a knowledgeable GP, I would

still be working and also saved the NHS on all the tests I have undergone,

trying to find the 'cause' if my symptons. The cause was...... I was not

receiving adequate treatment for the hypothyroidism.

Posted by deekayfox July 13, 2010 at 15:19

This issue deserves the government's attention. Not only could accurate

diagnosis and treatment save the NHS time and money, but it could also prevent

probably thousands of people suffering untold misery at the hands of GPs who

need intelligent guidance. Please do something for those of us who are suffering

through no fault of our own. I have watched my older sister follow the accepted

NHS treatment that has done very little for her hypothyroid condition. She is

grossly overweight, has been diagnosed with COPD even though she has never

smoked in her life, or been in the company of smokers regularly. She is

constantly hoarse and is now suffering with an irregular heart beat.

Consequently, I've taken my treatment outside of the NHS and I take a dessicated

thyroid product, plus adrenal support. My condition improved immediately. I urge

you to hold a public enquiry.

Posted by lucyd July 13, 2010 at 16:28

I managed my thyroid problems with the help of my doctor for many years. I took

Thyroxine and Liothyronine. Then the doctor retired and the new doctor changed

me back to thyroxine only. My health declined and I was sent to an

endocrinologist. I went to the endo half a dozen times, had numerous tests, and

eventually ended up being prescribed Thyroxine and Liothyronine. A total waste

of time and resources. I would like to see some form of self management system

being implemented, whereby people with long term problems could self manage,

only seeing the doctor when they had a problem. I've been hypothyroid for more

than 20 years and know if I feel well or not. Testing is fairly irrelevant but I

agree to costly tests, so my doctor feels like he is doing the right thing.

Abandon routine testing, and have a public enquiry into why doctors are not

allowed autonomy in treating this condition.

Posted by susie75 July 13, 2010 at 16:31

Please look at this terrible situation hypothyroid patients find themselves in.

The amount of money being spent on prescriptions for symptoms rather than the

cause (hypothyrodism) due to the poor TSH test must be astronomical.

Posted by adbaz July 13, 2010 at 16:39

As there has been some evidence that flouride added to tap water in some local

authorities contributes to hypnothyroidism - ban the addition of flouride in

water. if people want to take supplements they can do so but you cannot easily

extract what has been added. The evidence that this addition helped with tooth

decay in children has now been brought into questions and suggestions have been

made that the research results may have been flawed.

[Guest guest]

Had they just changed the title, the administrators would have

written to tell me this, yet none of us have heard from anybody. If this is

what they did, they had no right to remove all the messages on the 'Hypothyroidism

- Urgent Public Enquiry Called For' - and should have passed those messages

onto the previous topic I wrote, but they did not. I would like to think this

was a genuine mistook, but I have grown to be too cynical ;o(

Luv - Sheila

I think they just changed the TITLE. Here is

the link: http://spendingchallenge.hm-treasury.gov.uk/how-can-we-rethink-public-services-to-deliver-more-for-less/inappropriate-treatment-for-hypothyroidism-should-be-investigated

No virus

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Version: 8.5.441 / Virus Database: 271.1.1/3003 - Release Date: 07/13/10

18:36:00

[Guest guest]

Clear your cache Alice and then see if 'Hypothyroidism - Urgent

Public Enquiry Called For' is still there?

Sheila

unless it is something to do with computer cookies as I already looked at it

today I can still find it when i search for thyroid - it comes up third on the

list.

Alice

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found in this incoming message.

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18:36:00

[Guest guest]

...and have you heard back from them - cos I can't find

anybody that has.

Luv - Sheila

bloody marvellous i've

also contacted the site administrator to ask them what's going on!

x

>

>

>

>

[Guest guest]

Here you go, PROOF!!!

>

> Page saved to my computer at on 13/07/2001 at 16:58 which confirms that the

posting times shown here are correct, whereas the times now displayed on the

website have been altered.

>

> Tracey

>

heers Tracey!

I was the person who signed as " snake " and am just taking my time to copy and

paste my text on the other campaigns as well.

Fiona

[Guest guest]

Delyth - give me the username you wrote and I will send you a

copy of that comment. You can then post it elsewhere on the other

thyroid/thyroxine/hypothyroidism topics. and give a 5 star rating.

Luv - Sheila

- I think it did the trick!!

I have managed to leave my 'one-liner' (all I could think of through today's

'brain-fog') and vote and everything.

Good work!

>

> below is the message I have sent to the administrator.

>

> Hi! I registered yesterday together with my family and when we tried to

access your site today it will not allow us to do so? yet we left comments on

an issue in the HMT Spending Section which is close to our hearts

'HYPOTHYROIDISM - URGENT PUBLIC ENQUIRY CALLED FOR' Please can you tell us why

this topic has been removed and for what reasons?

>

> I look forward to an early response

>

>

>

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3003 - Release Date: 07/13/10

18:36:00

[Guest guest]

Are you surprised? Really?

Do you really think this government want ideas from the public? This is just an

ploy to boost their media face, not real at all.

There are many people taking advantage and posting racist, sexist and

disable-ist stuff and my guess is that very soon the government will anounce

that they have to remove the site because of this - and add that there were no

viable ideas they could use anyway.

As long as any government is in a stranglehold to the drug companies we will get

nowhere. What needs to be bought to the media is the amount of money that the

drugs companies are making at the expense of people's health. The doctors

agencies (RCP, BTA etc) are in thrall too and this is what we need to break.

[Guest guest]

Bit cynical myself about it actually. They don't get rid of me that easy either

ha-ha. Just copied and pasted it anyway. At least your remaining campaign is

high up there with the ratings isn't it. Hopefully not just for now.

Fiona.

[Guest guest]

Hi Lynne, the topic is not showing. The topic we are talking

about is not the one below but 'HYPOTHYROIDISM - URGENT PUBLIC ENQUIRY CALLED

FOR'. It's disappeared. However, we are continuing on with the one below, so

please send a comment and star rate it with 5, as this is the ONLY way the

government will take it further. We need to be at the top of all the ratings.

Luv - Sheila

http://spendingchallenge.hm-treasury.gov.uk/how-can-we-rethink-public-services-to-deliver-more-for-less/inappropriate-treatment-for-hypothyroidism-should-be-investigated

Luv Lynne

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3003 - Release Date: 07/15/10

02:26:00

[Guest guest]

http://spendingchallenge.hm-treasury.gov.uk/how-can-we-rethink-public-services-to-deliver-more-for-less/inappropriate-treatment-for-hypothyroidism-should-be-investigated

Go here now and make an appropriate comments. We need

everybody to do this and star rate it.

Luv - Sheila

Hi,

That's a greatway to make sure folk can't find it when

we tell everybody where it is. Still can't get in though.

Get a new e-mail account with Hotmail - Free. Sign-up

now.

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3003 - Release Date: 07/15/10

02:26:00

[Guest guest]

I keep getting this message :

This server could not verify that you are authorized to access the document

requested. Either you supplied the wrong credentials (e.g., bad password), or

your browser doesn't understand how to supply the credentials required.

Have we all been blocked, now, or what?????

Crazy stuff!

Del

>

> Now, I cannot even log back into the web site - it will not accept either my

> username or my password. What IS going on?

>

>

>

>

> Luv - Sheila

>

[Guest guest]

Looks like it Del.

Luv - Sheila

I keep getting this message :

This server could not verify that you are authorized to access the document

requested. Either you supplied the wrong credentials (e.g., bad password), or

your browser doesn't understand how to supply the credentials required.

Have we all been blocked, now, or what?????

Crazy stuff!

Del

>

> Now, I cannot even log back into the web site - it will not accept either

my

> username or my password. What IS going on?

>

>

>

>

> Luv - Sheila

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3006 - Release Date: 07/15/10

02:26:00

[Guest guest]

I am getting the same.... This is going from the ridiculas to the sublime.. What

is going on??

> >

> > Now, I cannot even log back into the web site - it will not accept either

> my

> > username or my password. What IS going on?

> >

> >

> >

> >

> > Luv - Sheila

> >

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.441 / Virus Database: 271.1.1/3006 - Release Date: 07/15/10

> 02:26:00

>

[Guest guest]

I could give up, but will not. I want some answers and I want to

know why the administrators are refusing to respond to any of our requests for

further information as to what is going on. My MP will have to get busy next

week after I see him on Saturday - which I am not relishing any more. I think I

will probably bite his head off.

Luv - Sheila

I am getting the same.... This is going from

the ridiculas to the sublime.. What is going on??

> >

> > Now, I cannot even log back into the web site - it will not accept

either

> my

> > username or my password. What IS going on?

> >

> >

> >

> >

> > Luv - Sheila

> >

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.441 / Virus Database: 271.1.1/3006 - Release Date: 07/15/10

> 02:26:00

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3006 - Release Date: 07/15/10

02:26:00

[Guest guest]

Copy it onto ALL the campaigns with thyroid/thyroxine/hypothyroidism

Fiona.

Luv - Sheila

Here you go, PROOF!!!

>

> Page saved to my computer at on 13/07/2001 at 16:58 which confirms that

the posting times shown here are correct, whereas the times now displayed on

the website have been altered.

>

> Tracey

>

heers Tracey!

I was the person who signed as " snake " and am just taking my time to

copy and paste my text on the other campaigns as well.

Fiona

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3003 - Release Date: 07/15/10

02:26:00

[Guest guest]

Don't get paranoid Fiona - we have ALL had our access taken away

and the new topic has now disappeared into the ether. We will start again

tomorrow. They want to wear us down, but we cannot allow that, the more topics

they take down that are to do with thyroid/thyroxine/hypothyroidism, the more

they will have to answer. This will make a real story and will be an example to

tell people what we are up against. the CONDEM government will CONDEMN anything

they want nothing to do with. And to think I voted for them!

Luv - Sheila

Here is your previous message that I saved

Posted

by snake

July 13, 2010 at 12:46

I was

previously diagnosed with ME/CFS and despite doing all the right things in

Pacing terms, I suffered a persistent annual decline. In 2006 my condition took

a different form and I suffered 3 days in bed after an afternoon out. All I was

told was " That'll be the ME " and I didn't get any further tests. I

had no choice but see a private retired GP for diagnosis and treatment because

of the severity of my illness. After some time, I ended up taking Armour

Thyroid and T3 tablets, but yet the NHS didn't want to believe I had a thyroid

problem. The only way of me getting official NHS diagnosis was to stop the

tablets that were working for a month and get a blood test. Thakfully my TSH

was raised and I could get Levothyroxine prescribed and get an endocrinologist

referral. However I have not found Levothyroxine to be as effective as Armour

Thryroid and it hasn't been possible to get a dose that matched the functioning

when I was using Armour. A year later I finally have an NHS prescription for T3

and my Levothyroxine is reduced. This has been a good step in the right

direction although my functioning is still not back to where it was before. I

know I have to be very assertive in pushing for maximum treatment possible. I

think due to the needless controversies doctors are frightened to treat people.

There has got to be some luck in my situation after the past 4 years. Yet even

now, I don't have full peace of mind that I can match the functioning that was

possible on a self-funding basis. Not everybody could afford to take another 18

months out (not the best set of circumstances for me either starting from

scratch) but it is the only way for me to avoid self-funding for the next 40

years. There are too many people having to self-fund or part self-fund

essential medication, when the Levothyroxine isn't fully alleviating their

symptoms. There are alternatives available and I wish more doctors could agree

that some people need more help. I don't think there has to be much deviation

in the reference range for this to make you very ill and doctors need to

understand the everyday limitations of being so ill with low thyroid function

and the implications of all the symptoms. I have had a lot of medications

prescribed to mask the symptoms of untreated thyroid, in particular pain

medications.

Flag

this comment as inappropriate

From: thyroid treatment

[mailto:thyroid treatment ] On Behalf Of Fiona

Sent: 15 July 2010 11:15

thyroid treatment

Subject: Re: Has our topic been HACKED?

> I had two posts (now I am glad I did) but

I have no idea how long they will be there before the Moderators are told the

2content is inappropriate " .

I have just read that you had started two same/similar topics. What I am

concerned about is the fact that I am sure I used " snake " or

" Snake " to log in and yet I am unable to log in today and I get a

message that says I don't have enough privelages. Is this because somehow I am

deleted from their system, or is it because I am trying to access the campaign

that was deleted? I wouldn't have typed my comments on both, it would have been

on the one that was removed.

I do recall noticing that my detailed comments were there yesterday after I

posted and that a couple of other people typed shortly afterwards, also typing

similar-ish comments to me.

Fiona

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3003 - Release Date: 07/15/10

02:26:00

[Guest guest]

I've emailed the administrators too as a member of the public who has wasted

many hours typing comments and had them completely disappear. I'll let you know

if I hear anything.

I was thinking maybe we could print out all the comments and original post and

actually send it to Downing Street directly since it's meant to be Nick Clegg's

baby and all? By recorded delivery! I'm still hoping it's a mistake but I'm

probably being naive.

I can see why people don't bother anymore if this is how they behave.

Good luck on Saturday Sheila.

> > >

> > > Now, I cannot even log back into the web site - it will not accept

> either

> > my

> > > username or my password. What IS going on?

> > >

> > >

> > >

> > >

> > > Luv - Sheila

> > >

> >

> >

> >

> > No virus found in this incoming message.

> > Checked by AVG - www.avg.com

> > Version: 8.5.441 / Virus Database: 271.1.1/3006 - Release Date: 07/15/10

> > 02:26:00

> >

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.441 / Virus Database: 271.1.1/3006 - Release Date: 07/15/10

> 02:26:00

>

[Guest guest]

Reposted by Mod for S

Help

Suddenly 50 emails for the tpa group have arrived ??!!How do I stop?

JULIE S

[Edited to remove personal information]

>

> I've emailed the administrators too as a member of the public who has wasted

many hours typing comments and had them completely disappear. I'll let you know

if I hear anything.

>

[Guest guest]

I changed 's option to receive a Daily Digest as she had

opted to receive Individual Emails. If anybody else is getting swamped and drowning

under the pile of messages coming in at the moment, please go to the Home Page

of this forum web site and look above the broad purple bar and click on (Edit

Membership). On the Page that opens, you can opt to receive a Daily Digest

(where you get up to 25 messages in just one email) or use the option to

receive Special Notices - and you will receive only the occasional email from

me, yet you can read and write direct from the forum web site. PLEASE NOTE:

Anybody opting to receive No Email will be removed as this forum needs to be

able to contact all members at times. This is made clear in the Home Page

Message.

Luv - Sheila

Reposted by Mod for S

Help

Suddenly 50 emails for the tpa group have arrived ??!!How do I stop?

JULIE S

[Edited to remove personal information]

>

> I've emailed the administrators too as a member of the public who has

wasted many hours typing comments and had them completely disappear. I'll let

you know if I hear anything.

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3006 - Release Date: 07/15/10

02:26:00

[Guest guest]

Hi Sheila, Clicked on the link-'site down for maintenance' 11.50 friday. thyroid treatment From: sheila@...Date: Thu, 15 Jul 2010 15:00:14 +0100Subject: RE: Re: Has our topic been HACKED?

http://spendingchallenge.hm-treasury.gov.uk/how-can-we-rethink-public-services-to-deliver-more-for-less/inappropriate-treatment-for-hypothyroidism-should-be-investigated

Go here now and make an appropriate comments. We need

everybody to do this and star rate it.

Luv - Sheila

Hi,

That's a greatway to make sure folk can't find it when

we tell everybody where it is. Still can't get in though.

Get a new e-mail account with Hotmail - Free. Sign-up

now.

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3003 - Release Date: 07/15/10

02:26:00

Get a free e-mail account with Hotmail. Sign-up now.