Re: Helping to Educate your Doctor

[Guest guest]

Dear Group,

The American TEA Party has had many gatherings that have been aided significantly by renting a whole bus and driver to take a group to the meeting.

I can not stress too heavily the importance of these topics:

The language surrounding hypothyroidism is NOT precise and covers up medical short comings.

The medical curriculum for physicians, even endcrinologists, does not include any of the physiology whose deficiencies mimic hypothyroidism and produce or use T3. The medical curriculum does not teach anything of the half of the Greater Thyroid System that exists between the thyroid gland and the cells' nuclei. It is either igored or dismissed.

If these two issues were known to medicine so that physicians would not be prosecuted for using such information, much of the miseries known to TPA members would disappear.

Numbers make an impact.

Have a great day,

Helping to Educate your Doctor

On 16th March from 1pm - 4:30pm the Patients Association will be holding a focus group in Central London to explore the possibility for having a Patient Forum which will help in guiding the teaching at the Medical School at University College London.We hope that by improving the patient input to the medical curriculum we can make the curriculum more relevant to the need of patients. This could include improving communication skills of tomorrows doctors, ensuring doctors know how to engage with patients and understand what information patients will need.If you would be interested in being involved in this focus group please get in contact with Wasson on 020 8423 9111

Sheila

[Guest guest]

Hi Sheila,

Thanks for your email. I hope that a Patient Forum will help guide medical training, but, though I am not an expert by any stretch of the imagination, I have my doubts. The medical profession use the results of research to guide them. From my experience, they are not interested in any amount of moans or anecdotal studies from us patients. I wonder if the group has any plans to do any research following the methods propounded by the rT3 and adrenals group. If there were any I would be happy to support it. If there is not, it is something I would like to develop.

Any thoughts?

Clare

Clare Albinson

www.clarealbinson.co.uk

www.perfectfitforsaddles.com

thyroid treatment From: sheila@...Date: Sat, 19 Feb 2011 17:06:06 +0000Subject: Helping to Educate your Doctor

On 16th March from 1pm - 4:30pm the Patients Association will be holding a focus group in Central London to explore the possibility for having a Patient Forum which will help in guiding the teaching at the Medical School at University College London.We hope that by improving the patient input to the medical curriculum we can make the curriculum more relevant to the need of patients. This could include improving communication skills of tomorrows doctors, ensuring doctors know how to engage with patients and understand what information patients will need.If you would be interested in being involved in this focus group please get in contact with Wasson on 020 8423 9111

Sheila

[Guest guest]

I think you are right Clare, they are more interested in research,and if they

wanted to see how we feel etc they only have to view our forums as they are.I am

not sure that this will be money well spent.

Kathleen

>

>

> Hi Sheila,

>

> Thanks for your email. I hope that a Patient Forum will help guide medical

training, but, though I am not an expert by any stretch of the imagination, I

have my doubts.

Edited to remove most of old message.

[Guest guest]

Because I am so

busy, unfortunately I never get a chance to see what the rT3 and Adrenal group

is doing Clare. Can you tell me a little more about this please?

Luv - Sheila

I wonder if the group has any plans to do any

research following the methods propounded by the rT3 and adrenals group.

If there were any I would be happy to support it. If there is not, it is

something I would like to develop.

[Guest guest]

Dear Clare, Kathleen, and others,

A century or more ago, we, the people, surrendered our medical sovereignty to a

group of people claiming to be doctors with a sense of duty to us. These duties

include putting the welfare of the patient first and foremost, keeping up with

medical science, and being honest in all professional relationships.

Endocrinology, with respect to the continuing symptoms of hypothyroidism caused

by post thyroid function deficiencies, have excused themselves from their end of

that bargain. They are not putting patient welfare first and foremost. They

are not keeping up with medical science. And they are not honest with us.

Sheila and I have, over the past years, written precise letters of complaint to

the medical and health authorities. The medical authorities have ignored us and

the health authorities have deferred to the medical authorities. There are not

many options left.

This meeting is a relatively low-cost option in time and money.

In my opinion the only option is to take endocrinology to court where we can

present evidence of their deficiencies.

The first deficiency is in the language surrounding these symptoms of

hypothyroidism. Quite contrary to established standards of linguistic care,

that are certainly necessary, there is fog. There are two views of

" hypothyroidism. " The narrow one implicates only the thyroid gland. The broad

one implicates any function that can impede or restrict the level of thyroid

hormones in the body, i.e., the thyroid gland, peripheral conversion, hormone

reception, the cells' nuclei, the cells' mitochondria, and supporting hormones,

enzymes, and other chemicals.

We can truly learn where endocrinology is oriented by the tests prescribed.

They only address the thyroid gland. They do not address any post (functionally

after) thyroid function or chemistry.

However, we patients assume, for lack of other information, that hypothyroidism

is defined by the symptoms. But these symptoms have many sources, which

endocrinology dishonestly claims are " nonspecific " in spite of science

indicating known possibilities. Obviously, the practice of endocrinology is not

keeping up with science, which now is getting old, and consequently,

endocrinology is not being honest with us.

The practice of endocrinology was informed in 1947 (Kirk and Kvorning) and again

in 1954 (Means) that the T4-only therapy was not suited for everyone.

Nonetheless, the T4-only therapy is still the only therapy for the symptoms of

hypothyroidism. And while it is substantially rational for those with only

thyroid gland deficiencies, it is not rational for those other deficiencies

which depend upon other hormones (T3, adrenal) enzymes or chemistry. Then in

1960 Dr. Marshall Goldberg presented a case for euthyroid hypometabolism, which

gives its victims the symptoms of hypothyroidism even though the thyroid gland

is secreting properly. Dr. Goldberg's therapy was T3. In 1967 (Refetoff) and

in 1970 (Braverman) discovered peripheral cellular hormone reception and

peripheral hormone conversion (or metabolism) respectfully. Since then the

knowledge of these functions has been refined.

Check out the Greater Thyroid System on the TPA website....

Medical scientists such as Goldberg and Baisier, et al., have produced patient

counterexamples. Physicians who value their medical ethics more than they fear

their medical council or board of medicine produce patient counterexamples. The

TPA registry now has more than 700 such cases. They have experienced the

continuing suffering under the T4-only therapy and experienced the relief from

that suffering under an effectively banned T3 containing therapy, either natural

or synthetic, either in combination with other thyroid related hormones or

virtually pure.

So here we are 40 years later still suffering with the T4-only therapy because

medical practice does not care to be responsible. It is not responsible in

numerous ways.

First, the diagnosis of any symptoms begins by making a list of all the possible

bodily functional abnormalities known to science that might create those

symptoms. In spite of medical science detailing these other functions, they are

not included in the testing procedures for the symptoms of hypothyroidism. They

are not included in spite of a 13+% error rate in the prescribed thyroid-focused

T4-only therapy. So endocrinology systematically violates the basic protocol of

differential diagnostics.

Second, the language is not clear. When thinking of the symptoms of

hypothyroidism, endocrinology seems to focus on only the thyroid gland as if the

above discoveries never existed. But patients only know hypothyroidism by its

symptoms and become totally frustrated when physicians claim that your thyroid

is quite OK when you are still suffering from these symptoms. This frustration

is multiplied when endocrinology's excuses for failure are found to be bogus.

Third, the " scientific " support for the T4-only therapy is junk science as it is

applied to the continuing symptoms of hypothyroidism. The supporting studies

used subjects who were treated OK with T4 only. Then they were given a small

dose of T3 in lieu of some T4. Routinely, this dose of T3 had a smaller

therapeutic value than the T4 it was replacing. These conditions " proved " that

T3 had no value. But what goes quite unscientifically unstated is that T3 has

no value only under these limited conditions. More generally, it does have

value. We know that it must because circa 1952, Drs. Gross and Pitt-Rivers

discovered that it was more active than T4. So what this " scientific " support

of the T4-only therapy did was " prove " that the active hormone (T3) was

ineffective while the relatively inactive hormone (T4) was effective. Give me a

break. Give us all a break.

So the question returns. Just how do we convince the masters of medicine, the

masters of endocrinology, that their claimed view of the symptoms of

hypothyroidism is too limited and lacking realism? This meeting is presents

hope at a low cost. The other alternative is time consuming and costly.

To give you an idea of the time and cost, there is the case of the American

Medical Association attempting to rid the United States of chiropractors. After

one chiropractor became sufficiently disturbed by the growing isolation from the

rest of the medical community, he set about restoring his profession through a

series of court cases based upon the anti-competitive activities of the AMA. It

took 15 years, 5 court cases (even to the US Supreme Court), and probably

millions of dollars to win.

So what will it be? Try this, organize for a court battle, find another

approach where virtually all have been tried, or just suffer?

Have a great day,

P.S. After chatting with my neighbor, a retired pilot, I have concluded that if

the airline industry were as cavalier about failure as endocrinology is, planes

would be falling out of the sky daily instead of less than annually.

> >

> >

> > Hi Sheila,

> >

> > Thanks for your email. I hope that a Patient Forum will help guide medical

training, but, though I am not an expert by any stretch of the imagination, I

have my doubts.

>

> Edited to remove most of old message.

>

[Guest guest]

Hi , Thank you for your well written post, I wish I was so eloquent with the

written word. I have fight in me but I not sure I know how to present that

fight.

Through TPA I have read and understood so much. And I feel every time I see my

endocrinologist just why doesn't he know what I have learnt. I sit in his

waiting room and look at his patient and know they are still suffering

hypothyroid symptoms, I can see it.

What would be expected of someone going to this meeting?

I agree we need to get this information out but I'm not confident I would say

the right thing. I have my experience of first no diagnosis for 6 years and then

15 years on T4 alone and now self treating first with Armour now just T3.

Judy

>

> Dear Group,

>

> The American TEA Party has had many gatherings that have been aided

significantly by renting a whole bus and driver to take a group to the meeting.

>

> I can not stress too heavily the importance of these topics:

>

> The language surrounding hypothyroidism is NOT precise and covers up

medical short comings.

>

>

[Guest guest]

HI ERIC

I will try and reply to your message again only some funny things are happening

on my computer with .

First am I to take it that this focus group is instead of THE DEMO that was

proposed at one time.

What is exactley required of us?

As regards T3 when a former GP prescribed it, as it was not tried out as it

should have been. I was on not T4 at the time and had the full T3 of 20mg in one

dose prescribed. T3 clearly takes some getting used to, but in turn I think you

still need some T4.How I was prescribed it caused a nasty upset stomache, so I

cannot say that it has no effect, but it was wrongly prescribed and needs to be

in smaller dosage.

Exactly where in London is the location going to be, as I tried to locate it on

a route planner and a whole variety of places came up to choose from.

I also have to go up to London on 14th March for hospital appointment.

Kathleen

>

> Dear Clare, Kathleen, and others,

>

> A century or more ago, we, the people, surrendered our medical sovereignty to

a group of people claiming to be doctors with a sense of duty to us. These

duties include putting the welfare of the patient first and foremost, keeping up

with medical science, and being honest in all professional relationships.

>

> Endocrinology, with respect to the continuing symptoms of hypothyroidism

caused by post thyroid function deficiencies, have excused themselves from their

end of that bargain. They are not putting patient welfare first and foremost.

They are not keeping up with medical science. And they are not honest with us.

>

> Sheila and I have, over the past years, written precise letters of complaint

to the medical and health authorities. The medical authorities have ignored us

and the health authorities have deferred to the medical authorities. There are

not many options left.

>

> This meeting is a relatively low-cost option in time and money.

>

> In my opinion the only option is to take endocrinology to court where we can

present evidence of their deficiencies.

>

>

[Guest guest]

Maya is hoping to attend, so hopefully, she will let us know

what went on. Perhaps you could contact Maya or Maya could contact and perhaps

you could go to the Meeting together, representing Thyroid Patient Advocacy. What

has written is what we need to get out to the Patient's Association. I

will write to them and ask them to take what I write into account because I

live in North Yorkshire and unable to attend the meeting in London.

Have you registered your thyroid status in the Register of

Counterexamples that I sent out this morning and keep sending out Judy.

Luv - Sheila

Hi , Thank you for your well written post, I wish I was so eloquent with

the written word. I have fight in me but I not sure I know how to present that

fight.

Through TPA I have read and understood so much. And I feel every time I see my

endocrinologist just why doesn't he know what I have learnt. I sit in his

waiting room and look at his patient and know they are still suffering

hypothyroid symptoms, I can see it.

What would be expected of someone going to this meeting?

I agree we need to get this information out but I'm not confident I would say

the right thing. I have my experience of first no diagnosis for 6 years and

then 15 years on T4 alone and now self treating first with Armour now just T3.

Judy

>

> Dear Group,

>

> The American TEA Party has had many gatherings that have been aided

significantly by renting a whole bus and driver to take a group to the meeting.

>

> I can not stress too heavily the importance of these topics:

>

> The language surrounding hypothyroidism is NOT precise and covers up medical

short comings.

>

>

[Guest guest]

Hmm! I was responding to this and it went into the ether.

The Patient's Association is here http://www.patients-association.com/

- the meeting we are talking about is taking place in London and I am wanting

as many people to go as possible to give our views. This is not in place of a

Demonstration (which incidentally has gone as dead as a dodo) - this is

something else. Read their web site and you will understand Kathleen.

Luv - Sheila

HI ERIC

I will try and reply to your message again only some funny things are happening

on my computer with .

First am I to take it that this focus group is instead of THE DEMO that was

proposed at one time.

What is exactley required of us?

As regards T3 when a former GP prescribed it, as it was not tried out as it

should have been. I was on not T4 at the time and had the full T3 of 20mg in

one dose prescribed. T3 clearly takes some getting used to, but in turn I think

you still need some T4.How I was prescribed it caused a nasty upset stomache,

so I cannot say that it has no effect, but it was wrongly prescribed and needs

to be in smaller dosage.

Exactly where in London is the location going to be, as I tried to locate it on

a route planner and a whole variety of places came up to choose from.

I also have to go up to London on 14th March for hospital appointment.

Kathleen

>

> Dear Clare, Kathleen, and others,

>

> A century or more ago, we, the people, surrendered our medical sovereignty

to a group of people claiming to be doctors with a sense of duty to us. These duties

include putting the welfare of the patient first and foremost, keeping up with

medical science, and being honest in all professional relationships.

>

> Endocrinology, with respect to the continuing symptoms of hypothyroidism

caused by post thyroid function deficiencies, have excused themselves from

their end of that bargain. They are not putting patient welfare first and

foremost. They are not keeping up with medical science. And they are not honest

with us.

>

> Sheila and I have, over the past years, written precise letters of

complaint to the medical and health authorities. The medical authorities have

ignored us and the health authorities have deferred to the medical authorities.

There are not many options left.

>

> This meeting is a relatively low-cost option in time and money.

>

> In my opinion the only option is to take endocrinology to court where we

can present evidence of their deficiencies.

>

>

[Guest guest]

Hi Sheila, Unfortunately at this time as I am my daughter carer I can't travel

to London but I would be able to attend something like this in Manchester.

Yes, I filled in the Register of Counterexamples when it was first posted.

Judy

>

> Maya is hoping to attend, so hopefully, she will let us know what went on.

> Perhaps you could contact Maya or Maya could contact and perhaps you could

> go to the Meeting together, representing Thyroid Patient Advocacy.