RE: Re: online clinic on thyroid disorders

[Guest guest]

I know Steve - totally pathetic and predicted. I would go back

and tell him that yes, you have indeed brought up a very important issue, and

expected that from a Panel of thyroid experts, you would have received a more

considered response. Ask him that if your scenario prompts consideration of

other explanations for your symptoms, what blood, urine, saliva tests would he

recommend and what further investigations would he then do and ask him to list

these and tell him that our members are being sent away with similar quotes

from their doctors, who then just send them away without further investigation,

which is just what he has done. Appalling. Sorry, I am in a rush.

I have posted three messages, one specifically asking IN RED for

a Panel Member to respond to my very serious question for the sake of all those

being left to suffer so unnecessarily on T4-only therapy. Of course, I fully

expect to be completely ignored - they have all probably been warned not to

respond to any questions from me.

You are right, what an appalling waste of space. I wonder as to

their Agenda!

Add the following and ask if the doctor has ever considered any

of these:

Thyroid function blood test results can be influenced by many

factors, any of which should be taken into consideration, e.g.

·

Labelling errors

·

Bacterial contamination

·

Yeast/Fungal contamination

·

Clotting

·

Sampling errors

·

Sample preparation errors

·

Sample storage errors

·

Thermal cycling

·

Antithyroid antibodies (any)

·

Antibodies from any other cause

·

Presence of specific ‘toxins’ in the blood

·

Presence of pharmaceutical drugs (interferences) within the

blood

·

The method of analysis being carried out eg radio-immune assay

(RIA)

·

‘Systematic’ errors in analytical equipment or

methodology

·

Composite errors <> pre-analysis (not mentioned above)

·

MCT8 mutations

It is also known that thyroid function tests will be normal also

in patients who have a proven carcinoma. The T4 and TSH value can be misleading

in such cases.

Many individuals with classic symptoms of hypothyroidism, such

as low body temperature, joint pain, fatigue and depression, are discouraged

when they’re told that their thyroid hormone levels are within the normal

range. The question of whether they might be resistant to their body’s

own thyroid hormone is seldom considered. Yet, a disease known as thyroid

hormone resistance can prevent thyroid hormone from reaching the body’s

cells.

The discovery of MCT8 mutations explains laboratory

discrepancies e.g. cases in which the lab results didn’t fit a particular

pattern. It also explains how thyroid hormone resistance can cause TSH to

appear normal even with a low FT4. In many instances only the TSH test is

performed. If the TSH result is normal, and symptoms of hypothyroidism are

observed, tests for FT4, FT3 and T3 should all be performed.

None of these types of error are ever shown as being part of the

reference range, but they all add to the unquantifiable

‘unreliability’ of the final number that appears on a lab report;

stated to be within/outside a reference range. The labs expect, but often

don’t get, notification of antibodies found by other labs or by

investigations showing antibody activity, to enable proper screening

(dilutions) for likely errors. e.g. vitiligo, alopecia, ongoing autoimmune

symptoms specific to such as lupus, autoimmune attacks on specific organs,

histology samples, haematological examinations. A search on Pubmed shows 126

such cases.

Why do i bother....

Look at my answer to my people expierence hypo symoptoms with normal TSH FT4

and FT3

Dear Steve, I was interested to hear your story. It is difficult to comment on

what may be a complex problem, but I have to say if a person has unexplained

symptoms and the clinical examination is normal and a full thyroid profile (by

that I mean serum TSH and FT3/FT4 levels) is entirely normal, it is extremely

improbable that there is thyroid disease. This scenario would prompt

consideration of other explanations for the symptoms. You have brought up an

important issue, that the measurement of serum TSH alone is not always enough

to exclude hypothryoidism, in a tiny proportion of cases pituitary disease can

be missed.

Steve

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[Guest guest]

This is appalling. The Admin. have posted a message to say the

thyroid panel are only there to answer personal questions …. and focusing

on individual patient queries first and foremost.

I have sent the following response. They wriggle out of anything

and everything they cannot answer. Is it any wonder we have lost all faith in

this very private gentleman's club that are not answerable to anybody?

Luv - Sheila

Hello Steve-H

....our expert panel are really

here to answer personal thyroid questions rather than comment on laboratory

tests and some of the concerns you have. For this reason I hope you understand

that the experts will be focussing on individual patient queries first and

foremost.

Steve asked a personal thyroid

question which has not been answered. This is most unfair. If Dr Petros

Perros believes that Steve might be suffering with some other illness as he

suggests, then Steve's question is quite legitimate and should be followed

through and his concerns should not be brushed to one side. He is not asking

for comments on laboratory tests, he is making an excellent point that in his

personal case, doctors should not dismiss him completely because they believe

his thyroid function tests are normal. He was simply giving an example of

problems that can go wrong with laboratory tests.

Not only is Steve waiting for an

answer to his legitimate questions, there are tens of thousands of us out here

who would like the British Thyroid Association to respond once and for all to

this question, which has been asked of them on numerous occasions. If Steve was

a patient of Dr Petros Perros, and he believes Steve's symptoms are not related

to thyroid or a thyroid associated conditions, would he refuse to investigate

further to find out what exactly what his symptoms related to. He needs to know

what other tests he should be asking his doctor for or what other specialists

he should be referred to in order to help him regain his normal health.

Please will you answer this

question?

Sheila

Im back in the office and have updated my

thread with most of this information.

You can follow it here if i get a reply.

http://www.talkhealthpartnership.com/forum/viewtopic.php?f=123 & t=2127 & p=6113#p6113

Steve

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[Guest guest]

I think they have probably got rid of mine, apart from the one I

posted about the two physiologically different definitions of hypothyroidism,

which they have put into another thread about T4 something. That heading stood

out and over 180 hits - probably didn't like that so decided to hide it away.

However, I have not yet found my other questions, but they too may have been

'hidden' in other threads.

I must say, this is nothing other than what I have come to

expect from this association. This is the first day of the thyroid clinic, and

I am thoroughly disgusted. I doubt this clinic will last the week. Beastall

seems to be at a loss of what to say, so he copies part of an original answer

he posted and plops them as answers into other questions, that have no

relevance whatsoever. What a plonker!

Luv - Sheila

They are a disgrace for deleting posts. It

seems if you mention a doctors name they are also deleting, even if its peatifled

or lowe.

They are also merging some. I again got some reply but this time for the

talkhealth admin saying they will focus on indicidual cases first and not the

post i made which shiela asked me to lol.

Steve

>

> They seem to have removed this one, too: ' Pse read then answer why NHS

won't check T3 ' - when you click on it, it says 'The requested topic does not

exist.'. They seem to be clearing away the stuff that doesn't relate to

'clinical' queries.

>

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[Guest guest]

I've already done it Steve - I was just sending a copy of what I

had sent to the thyroid clinic. I see the forum is again locked, but presume

this is to stop any of us posting any more questions overnight. This admin team

must most definitely be wondering just why it is thyroid sufferers are getting

so angry, but hopefully, after today's fiasco, they will soon realise why we

are all getting so angry.

Don't give up Steve, there are so many bad ones out there that

we are in desperate need of some good ones.

Luv - Sheila

Would you be kind enough to add this to my

thread its called " Normal thyroid labs but extreme hypo symotoms "

Or if you feel it would be better for me to do it, i will have to do it in

about 3 hours when im back into the office.

I am getting so angry reading all of there replies to people

i even just wrote " what a load of boll*cks " on one reply but then

deleted it as i held my anger back.

I no longer want to be an endocrinologist, there is no way i want ANYTHING to

do with these sort of people. Nutritionist/Naturopath all the way as Dr

peatfield reccomended.

>

> I know Steve - totally pathetic and predicted.

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[Guest guest]

Oh No! This is really starting to worry me now, because it is

showing that the BTA really have little to no knowledge about anything. We

might have suspected this but it does appear their educating is sadly lacking

and they have no idea about any association between low nutrients and low

thyroid whatsoever. I think we need to gather some of this information together

to report on our web site www.tpa-uk.org.uk

and let the people out there know more of what is going on.

Sheila

I started a thread titled 'diet' and asked why

we are not tested for mineral and vitamin deficiencies that prevent the

conversion of T4 to T3. Also asked why doctors do not advise a low carb diet as

this is effective for a lot of people. The subject has gone.

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[Guest guest]

That would be great if there is somebody who is happy to go

through the questions they have answered and copy them all. sorry, I haven't

the time to do this as I am already working about 12 hours a day on other

thyroid stuff and not getting done what I should be.

Have they opened the thyroid clinic today yet, not even been

there?

Luv - Sheila

What about copying some of their answers which

we know are wrong/rubbish, then putting up the correct answer with links to

references/studies showing the right answer on TPA's website. Just a thought!

Steve

>

[Guest guest]

Well, I have just answered my own question. Just been to the

forum and here is the message Online

clinic on thyroid disorders - TEMPORARILY CLOSED

I have just written to the Administrator asking her to let me

have reasons why there is a temporary closure and also asking whether this

clinic will be opening again shortly. I will let everybody know when I get a

response.

Perhaps the Thyroid Experts realised that they had bitten off

more than they could chew and haven't got a leg to stand on. We probably

outfaced them and perhaps they realised that if they carried on, they would be

showing the rest of the world just how little knowledge they really have

about anything other than a non-functioning thyroid gland - that needs just T4.

Too many questions about T3!

Luv - Sheila

That would be

great if there is somebody who is happy to go through the questions they have

answered and copy them all. sorry, I haven't the time to do this as I am

already working about 12 hours a day on other thyroid stuff and not getting

done what I should be.

Have they opened the thyroid clinic

today yet, not even been there?

Luv - Sheila

What about copying some of their answers which we know are wrong/rubbish,

then putting up the correct answer with links to references/studies showing the

right answer on TPA's website. Just a thought!

Steve

>

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[Guest guest]

I did receive a response, gave me a link to go to, and the only

thing to read was FORUM

TEMPORARILY CLOSED

by talkhealth

on Wed Jan 25, 2012 9:30 pm

Due to the

unprecedented volume of questions in our online clinic on thyroid disorders, we

have taken the decision to close it temporarily.

Seems we

found their weak spot and don't want to expose themselves further.

Sheila

I dont have the time either im afraid

I wish i was able to work on thyroid related things all day instead of my job

about sewers and water.. its so boring zzzzzz lol - I need the money too badly

at the moment.

Keep up the good work Sheila!!

Steve

--- In

[Guest guest]

Yes they have, but as far as I am aware, they have left the one

" Two physiologically different definitions of Hypothyroidism " - but

instead of this thread appearing and standing alone so it got attention, they

have now moved it into the middle of another thread so nobody can see it unless

they read through all of that thread. They have also added loads of other

separate thread headings into other thread headings so people can no longer

find them.

Luv - Sheila

Sheila - have they been removing your posts?!

Your comment in this thread seems to have disappeared:

http://talkhealthpartnership.com/forum/viewtopic.php?f=123 & t=2095

If so - shocking! It was a perfectly reasonable post!

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[Guest guest]

This describes the BTA to a 'T' Helen. The BTA GOBSAT!

Luv - Sheila

I love the phrase that someone used, 'GOBSAT' - 'Good Old Boys Sat Around A

Table' - i.e., standards and parameters arrived at, not by scientific evidence,

but by general agreement among influential doctors and consultants. That's the

way we do it here, old boy...

[Guest guest]

What was the thread you posted your comment in ?

Luv - Sheila

....... Beastall seems to be at a loss of what to

say, so he copies part of an original answer he

posted and plops them as answers into other questions, that have no relevance

whatsoever. What a plonker!

LOL - he sure is, Sheila. I decided to give him a piece of my

mind. Wonder how long that will stay up there....

love,

xx

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[Guest guest]

They dislike me because they know I am telling the truth and

they cannot prove otherwise. This is causing them frustration, but this is what

TPA is all about, and we will continue to hit them with the truth and the facts

until they start to change their present diagnostic and treatment protocol.

Watch this space.

Luv - Sheila

I think they really dislike you Sheila loll,

your message in my thread has been deleted yet everybody else's stays.

They have updated the forum now and everything is under a topic (seems a good

idea) and hopefully it re-opens today.

Steve

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