Re: first endo visit - the right thing?

[Guest guest]

Hi Jae,

It never fails to impress me, this misinformation and scare-tactic bent that

MD's have. Of COURSE you will be better on ATD's. You may even get into

remission. There is NO reason for you to become fat, morose and

miserable--in fact that is the experience I've heard again and again from

people who've submitted to RAI and had their thyroid killed, but never from

someone properly monitored on ATD's.

You have to monitor your levels closely, and not become over-medicated and

hypo. You have to learn the symptoms, learn to watch your own physical and

mental processes closely so that you can get all the clues you need to

determine when it's appropriate to get tested. The doctors don't like ATD's

cause they have to monitor you on them, more work. You need monthly tests

for a while, the dosage changes (first 6 weeks generally it's pretty high,

while your body uses up stored hormone, then you start gradually lowering

it). You have to remember to take the pills 3 x a day. You have to be

proactive in your own care, and use the doctor as an ASSISTANT to help you

stay healthy. You will have a life. I have a very full one, fully engaged

with my family, able to exercise, work, and thrive and I've been on Tapazol

for 9 years. You will, if you do it right, get to a low maintenance dose,

and as I said above, maybe even get to remission. And if, as in my case,

remission remains illusive, you will be FINE on a low ATD dose for many,

many years. In fact, most of the problems on ATD's are in the first couple

of months, and very few people can't take one or the other of them. The

following site was recently posted. It has some decent info on ATD's:

http://patients.uptodate.com/frames.asp?page=topic.asp & file=endo_hor/5036

You need to be sure, btw, that you get the most up-to-date tests. I think

this site doesn't list them. They are FT4, FT3, TSI (a baseline but you

don't need to repeat this one too often) and the doctor's favorite, TSH.

Plus a baseline liver panel, again repeated occasionally. Lots of docs still

use the outdated tests, total T4, T3 uptake etc. They are NOT worth paying

for.

Terry

>

> Reply-To: graves_support

> Date: Sat, 9 Aug 2003 16:21:35 -0500

> To: graves_support

> Subject: first endo visit - the right thing?

>

>

>

> Hi!

>

> I had my first endo visit and he said am a classic Graves patient

> that will never have a chance at remission because of my family

> history.

>

> He laughed when I pointed to the 1998 Italian study of RAI. I said if

> those results were typical, he could just as well treat me with leeches

> and I'd have a 15 percent chance of being healthy.

>

> He admitted that RAI is completely dependent on the dose and he said

> the dose is ONLY a guess. If you get too much, your whole thyroid dies

> and you are hypo forever. If you get too little, you are still hyper

> and at best only 50% of the patients get the right dose.

>

> But, you know, there are new gene therapies and laser therapies that

> will be out in a few years and if I still have my thyroid, maybe I

> can get a cure???

>

> I decided to try drug therapy for a while. He put me on 10 mg tap. I

> have very, very itchy legs that I am hoping will be helped by this.

>

> Of course, I have my second thoughts. ...

>

> My question is: IS ANYONE HAPPY ON ATDS? DOES ANYONE HAVE A LIFE?

> Will I become fat, morose, irritable? The doctor suggested I would.

>

> Jae

>

>

>

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

> ------------------------------------------------------------------------------

> --------

>

>

[Guest guest]

Hi jae,

I'm a living testemony that you can achieve remission on ATDs.

I have a family history of thyroidism.

I'm currently going into remission, which I did using medication.

You will feel better on the medication.

I have that itching on my legs as well.

Take care.

R. Green

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

On Saturday, August 9, 2003, at 05:06 PM, graduate56@... wrote:

> Hi jae,

> I'm a living testemony that you can achieve remission on ATDs.

> I have a family history of thyroidism.

> I'm currently going into remission, which I did using medication.

> You will feel better on the medication.

> I have that itching on my legs as well.

> Take care.

> R. Green

Does it go away??? My legs look awful.

jae

[Guest guest]

Terry,

Your email gives me a lot of comfort. The doc's main message to me

was: Even if we kill your whole thyroid, it is easier to treat hypo

than hyper.

The doctor didn't order monthly tests. He ordered one set of tests 8

weeks after the set I'm getting monday. Also, I thought he ordered one

10 mg pill per day, not three.

Jae

On Saturday, August 9, 2003, at 04:44 PM, Terry ding wrote:

> Hi Jae,

>

> It never fails to impress me, this misinformation and scare-tactic

> bent that

> MD's have. Of COURSE you will be better on ATD's. You may even get into

> remission. There is NO reason for you to become fat, morose and

> miserable--in fact that is the experience I've heard again and again

> from

> people who've submitted to RAI and had their thyroid killed, but never

> from

> someone properly monitored on ATD's.

>

> You have to monitor your levels closely, and not become over-medicated

> and

> hypo. You have to learn the symptoms, learn to watch your own physical

> and

> mental processes closely so that you can get all the clues you need to

> determine when it's appropriate to get tested. The doctors don't like

> ATD's

> cause they have to monitor you on them, more work. You need monthly

> tests

> for a while, the dosage changes (first 6 weeks generally it's pretty

> high,

> while your body uses up stored hormone, then you start gradually

> lowering

> it). You have to remember to take the pills 3 x a day. You have to be

> proactive in your own care, and use the doctor as an ASSISTANT to help

> you

> stay healthy. You will have a life. I have a very full one, fully

> engaged

> with my family, able to exercise, work, and thrive and I've been on

> Tapazol

> for 9 years. You will, if you do it right, get to a low maintenance

> dose,

> and as I said above, maybe even get to remission. And if, as in my

> case,

> remission remains illusive, you will be FINE on a low ATD dose for

> many,

> many years. In fact, most of the problems on ATD's are in the first

> couple

> of months, and very few people can't take one or the other of them. The

> following site was recently posted. It has some decent info on ATD's:

>

> http://patients.uptodate.com/frames.asp?page=topic.asp & file=endo_hor/

> 5036

>

> You need to be sure, btw, that you get the most up-to-date tests. I

> think

> this site doesn't list them. They are FT4, FT3, TSI (a baseline but you

> don't need to repeat this one too often) and the doctor's favorite,

> TSH.

> Plus a baseline liver panel, again repeated occasionally. Lots of docs

> still

> use the outdated tests, total T4, T3 uptake etc. They are NOT worth

> paying

> for.

>

> Terry

>

> >

> > Reply-To: graves_support

> > Date: Sat, 9 Aug 2003 16:21:35 -0500

> > To: graves_support

> > Subject: first endo visit - the right thing?

> >

> >

> >

> > Hi!

> >

> > I had my first endo  visit and he said am  a classic Graves patient

> > that will  never have a chance  at remission because  of  my  family

> > history.

> >

> > He  laughed when I pointed to the 1998 Italian study  of RAI. I said

> if

> > those results were typical, he could just as well treat me with

> leeches

> > and I'd have a 15 percent  chance of being healthy.

> >

> > He admitted  that RAI is completely dependent on the  dose and he

> said

> > the dose is ONLY a guess. If you get too much, your whole thyroid

> dies

> > and you are hypo forever. If you get too little, you are still hyper

> > and at best only 50% of the patients get the right dose.

> >

> > But, you know, there are new gene therapies and laser therapies that

> > will be out in a few years and if I still  have my  thyroid,  maybe I

> > can get a cure???

> >

> > I decided to try drug therapy for a while. He put me on 10 mg tap.  I

> > have  very, very itchy  legs that I am hoping will be  helped by

> this.

> >

> > Of course, I  have my second thoughts. ...

> >

> > My question  is: IS ANYONE HAPPY ON ATDS? DOES ANYONE HAVE  A LIFE?

> > Will I become fat, morose, irritable?   The doctor suggested I 

> would.

> >

> > Jae

> >

> >

> >

> >

> > -------------------------------------

> > The Graves' list is intended for informational purposes only and is

> not

> > intended to replace expert medical care.

> > Please consult your doctor before changing or trying new treatments.

> > ----------------------------------------

> > DISCLAIMER

> >

> > Advertisments placed on this yahoo groups list do not have the

> endorsement of

> > the listowner. I have no input as to what ads are attached to emails.

> >

> -----------------------------------------------------------------------

> -------

> > --------

> >

> >

[Guest guest]

Jae,

some doc's start you on a smaller amount of medication and add more if it

doesn't work--not, in my opinion, a recipe for success. Some want to have

you " fail " so you're more tractable and will more readily agree to RAI, and

so start you on less. Did you share test results with us? Sorry if I'm

behind, I've got a nasty cold and am not keeping things straight right now.

Knowing your numbers would help.

Terry

>

> Reply-To: graves_support

> Date: Sat, 9 Aug 2003 17:34:42 -0500

> To: graves_support

> Subject: Re: first endo visit - the right thing?

>

>

> Terry,

> Your email gives me a lot of comfort. The doc's main message to me

> was: Even if we kill your whole thyroid, it is easier to treat hypo

> than hyper.

>

> The doctor didn't order monthly tests. He ordered one set of tests 8

> weeks after the set I'm getting monday. Also, I thought he ordered one

> 10 mg pill per day, not three.

>

> Jae

>

>

>

> On Saturday, August 9, 2003, at 04:44 PM, Terry ding wrote:

>

>> Hi Jae,

>>

>> It never fails to impress me, this misinformation and scare-tactic

>> bent that

>> MD's have. Of COURSE you will be better on ATD's. You may even get into

>> remission. There is NO reason for you to become fat, morose and

>> miserable--in fact that is the experience I've heard again and again

>> from

>> people who've submitted to RAI and had their thyroid killed, but never

>> from

>> someone properly monitored on ATD's.

>>

>> You have to monitor your levels closely, and not become over-medicated

>> and

>> hypo. You have to learn the symptoms, learn to watch your own physical

>> and

>> mental processes closely so that you can get all the clues you need to

>> determine when it's appropriate to get tested. The doctors don't like

>> ATD's

>> cause they have to monitor you on them, more work. You need monthly

>> tests

>> for a while, the dosage changes (first 6 weeks generally it's pretty

>> high,

>> while your body uses up stored hormone, then you start gradually

>> lowering

>> it). You have to remember to take the pills 3 x a day. You have to be

>> proactive in your own care, and use the doctor as an ASSISTANT to help

>> you

>> stay healthy. You will have a life. I have a very full one, fully

>> engaged

>> with my family, able to exercise, work, and thrive and I've been on

>> Tapazol

>> for 9 years. You will, if you do it right, get to a low maintenance

>> dose,

>> and as I said above, maybe even get to remission. And if, as in my

>> case,

>> remission remains illusive, you will be FINE on a low ATD dose for

>> many,

>> many years. In fact, most of the problems on ATD's are in the first

>> couple

>> of months, and very few people can't take one or the other of them. The

>> following site was recently posted. It has some decent info on ATD's:

>>

>> http://patients.uptodate.com/frames.asp?page=topic.asp & file=endo_hor/

>> 5036

>>

>> You need to be sure, btw, that you get the most up-to-date tests. I

>> think

>> this site doesn't list them. They are FT4, FT3, TSI (a baseline but you

>> don't need to repeat this one too often) and the doctor's favorite,

>> TSH.

>> Plus a baseline liver panel, again repeated occasionally. Lots of docs

>> still

>> use the outdated tests, total T4, T3 uptake etc. They are NOT worth

>> paying

>> for.

>>

>> Terry

>>

>>>

>>> Reply-To: graves_support

>>> Date: Sat, 9 Aug 2003 16:21:35 -0500

>>> To: graves_support

>>> Subject: first endo visit - the right thing?

>>>

>>>

>>>

>>> Hi!

>>>

>>> I had my first endo  visit and he said am  a classic Graves patient

>>> that will  never have a chance  at remission because  of  my  family

>>> history.

>>>

>>> He  laughed when I pointed to the 1998 Italian study  of RAI. I said

>> if

>>> those results were typical, he could just as well treat me with

>> leeches

>>> and I'd have a 15 percent  chance of being healthy.

>>>

>>> He admitted  that RAI is completely dependent on the  dose and he

>> said

>>> the dose is ONLY a guess. If you get too much, your whole thyroid

>> dies

>>> and you are hypo forever. If you get too little, you are still hyper

>>> and at best only 50% of the patients get the right dose.

>>>

>>> But, you know, there are new gene therapies and laser therapies that

>>> will be out in a few years and if I still  have my  thyroid,  maybe I

>>> can get a cure???

>>>

>>> I decided to try drug therapy for a while. He put me on 10 mg tap.  I

>>> have  very, very itchy  legs that I am hoping will be  helped by

>> this.

>>>

>>> Of course, I  have my second thoughts. ...

>>>

>>> My question  is: IS ANYONE HAPPY ON ATDS? DOES ANYONE HAVE  A LIFE?

>>> Will I become fat, morose, irritable?   The doctor suggested I 

>> would.

>>>

>>> Jae

>>>

>>>

>>>

>>>

>>> -------------------------------------

>>> The Graves' list is intended for informational purposes only and is

>> not

>>> intended to replace expert medical care.

>>> Please consult your doctor before changing or trying new treatments.

>>> ----------------------------------------

>>> DISCLAIMER

>>>

>>> Advertisments placed on this yahoo groups list do not have the

>> endorsement of

>>> the listowner. I have no input as to what ads are attached to emails.

>>>

>> -----------------------------------------------------------------------

>> -------

>>> --------

>>>

>>>

[Guest guest]

Please view this site with caution.

http://patients.uptodate.com/frames.asp?page=topic.asp & file=endo_hor/5036

****

Notice lower down.

****

The American Thyroid Association

The Endocrine Society

Thyroid Foundation of America

ACKNOWLEDGMENT — The author and editorial staff at UpToDate, Inc. would like

to acknowledge the assistance of London in the preparation of this

patient information topic review.

****

These are are sponsored by the pharmaceutical industry, which also pays for

part of many doctors education. !!!!

And Terry is very correct. The labs they suggest are incorrect and if those

are relied on, the patient will become very ill, without much hope.

Has anyone looked up this London yet , to see where her allegiances

lie ?

IF you want accurate TRUE information, not slanted to scare the dickens out

of you... always follow the money first... before you believe anything they

have to say.

Mixing truth and opinion is the best way to tell a lie and have others

believe you.

-Pam L -

[Guest guest]

Jae,

You have gotten great advice already from other members of this group, so I

won't repeat (simply agree).

I can tell from your post that you are picking up on bias and errors in

what your doc has been telling you. I just want to say: listen to your

inner voice, let it guide you. You are on track. Just need to get down the

specifics of monitoring yourself for symptoms, getting labs done, and

collaborating with a good doctor (sounds like you are in need of a new

one). If you haven't been to Mediboard.com, you should; go to the Graves'

Discussion group, and start with Thyroid Awareness 101 thread. Tons of info

as well. You can also post your labs there (as well as here) to get a

better sense of how to read the results and find your " set point " (the

numbers at which you feel your best).

I am happy on PTU so far. I will never do RAI. If you are properly

monitored and don't go hypO (or at least not kept that way for long), I

don't see why you'd gain weight. Just be sure to get labs every 4 weeks

(for FT3 & FT4).

P.S. Your doctor is not a fortune teller, and cannot predict with 100%

accuracy whether or not you will reach remission.

[Guest guest]

>>> pladd@... 08/09/03 19:10 PM >>>

It is not my intention to start a fight but the information in this

article is to the best of my knowledge accurate and is not anti-ATD use

.. Did you really read it?

http://patients.uptodate.com/frames.asp?page=topic.asp & file=endo_hor/5036

Perhaps we could ask

Elaine to make a comment on it.

Aileen

[Guest guest]

Aileen,

The most important thing we can show new Graves' patients is to question

everything. This includes fancy sounding names and tittles. And I was very

concerned that this LINK is being used in this group as a 100% true and

factual summery.

There is a SLANT in it.

First off lets click on the article at the bottom of the page.

RAI treatment; You will see the short summery , useing the word CURE more

than once.

******

S Ross, MD

UpToDate performs a continuous review of over 290 journals and other

resources. Updates are added as important new information is published. The

literature review for version 11.2 is current through April 2003; this topic

was last changed on May 5, 2003. The next version of UpToDate (11.3) will be

released in October 2003.

Radioiodine is the most popular treatment for hyperthyroidism in the United

States. In a 1990 survey, 69 percent of North American thyroid specialists

chose radioiodine for a hypothetical patient with Graves' hyperthyroidism.

It is less popular elsewhere, being chosen as first-line therapy for a

similar patient by only 22 and 11 percent of European and Japanese thyroid

specialists, respectively [1].

Radioiodine is administered orally as sodium 131-I in solution or a capsule.

The radioiodine is rapidly incorporated into the thyroid, and its

beta-emissions result in extensive local tissue damage. The net effect is

ablation of thyroid function over a period of 6 to 18 weeks.

No woman of child-bearing age should be treated with radioiodine without a

careful inquiry about or testing for pregnancy (see below).

GRAVES' DISEASE — The primary goal of radioiodine therapy in Graves' disease

is to cure the hyperthyroidism. It is controversial, however, whether

radioiodine should be given in sufficient dose to induce hypothyroidism or

in a lower dose in an attempt to achieve a euthyroid state [2].

A high dose of radioiodine (128 to 155 µCi/g [4.7 to 5.7 MBq/g]) cures the

hyperthyroidism in 90 percent of patients, but eventually causes hypothyroidism

in at least 80 percent [3]. Higher doses are not associated with higher rates of

cure.

[Guest guest]

Now... Lets go back to the original hyper page.

I am going to list some of the errors I see.

*

Antithyroid drugs (also called thionamides) are used to treat an overactive

thyroid (hyperthyroidism) caused by Graves' disease, an autoimmune condition

These drugs block the synthesis of thyroid hormone by the thyroid gland.

They may also help control the disease by indirectly affecting the immune

system.

May help ?

*

Long-term treatment is associated with a remission of Graves' disease in 30

percent of patients.

This is a very LOW estimate.

*

The use of antithyroid drugs has several benefits but some risks.

That's funny... nowhere did they use this word RISK in their RAI information

*

MMI can be administered once per day.

ALL MMI drug inserts, and PRDs say this drug must be taken 3 times a day.

*

Monitoring — Doctors usually monitor the effectiveness of antithyroid drug

treatment by checking blood thyroid hormone levels periodically. This

monitoring includes measurement of T4, T3, and thyroid-stimulating hormone

(TSH) levels. Antithyroid drugs typically reduce levels of both T3 and T4,

but levels of T3 may take longer to return to normal in some people. TSH

levels usually take the longest to return to normal.

Again... If these tests are used to monitor the patient will NEVER feel good

Then it is a matter of how long they can tolerate being ill before they

think the word 'cure' is sounding pretty darn good.

*

PROLONGED REMISSION — About 30 percent of people who take an antithyroid

drug for one to two years will have prolonged remission of Graves' disease.

It is not known for sure if the antithyroid drug plays an active role in

this remission, or if it simply controls hyperthyroidism until spontaneous

remission occurs.

Factors associated with prolonged remission — It is not possible to tell for

certain which people with Graves' disease will achieve prolonged remission

with antithyroid drug treatment. However, several factors seem to play a

role in prolonged remission.

Once again lacking in any facts and very misleading in my opinion.

*

The nausea and vomiting may depend on the amount of drug taken in each dose;

therefore, spreading large total daily doses out over the day might reduce

these side effects.

This nausea is mentioned several times throughout. But there are no side

affects listed for RAI at all.

The spreading the doses out through the day is only mentioned as something

one can try if they are too SICK.

Nausea is often a sign of too much medication . This is not said.

The true reason for spreading the dose every 8 hours is to keep thyroid

levels stable, which prevents other diseases / conditions. Stable levels of

antithyroid drugs are the ONLY way to remove the antibodies which ARE Graves

disease. There is nothing wrong with our thyroid. It is healthy and

responding properly to the signals the body is sending it.

This FACT is not mentioned.

I think this may be enough to show our new members we MUST question

everything. And often these things are simply a huge slant, that while

lacking outright lies... because they can not get away with that, will

heavily influence a new patients choice of treatment.

If anyone, as a child told little white lies of omission, they can see many

of these web sites can easily do the same thing.

I stand firm on my ground.

This web site does NOT reflect any of the hard earned knowledge we as a

group has acquired, and are willing to share.

I also really resent the " .. Did you really read it? " comment.

Please show me respect.

-Pam L -

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Yahoo really crammed all of that close together.

Sorry it is so hard to make out. I HAD it all nicely formatted.

-Pam L- hoping folks take the effort to sort it out. Sheesh !

[Guest guest]

Pam,

thanks for doing the analysis of that site. It really bothered me, but other

than the testing mis-information, I kind of glossed over the rest. You are

so right!

Terry

>

> Reply-To: graves_support

> Date: Sat, 9 Aug 2003 21:48:16 -0700 (Pacific Daylight Time)

> To: <graves_support >

> Subject: Re: first endo visit - the right thing?

>

> Yahoo really crammed all of that close together.

>

> Sorry it is so hard to make out. I HAD it all nicely formatted.

>

> -Pam L- hoping folks take the effort to sort it out. Sheesh !

>

>

[Guest guest]

Terry,

I remember being so brand new to all of this, and as soon as I saw those

nice fancy tittles and official seals, I thought they must be the ones that

knew the correct answers.

I had not yet learned the at sin of omission, and emphasis on the wrong

things DO make all the difference in the world.

If we are missing the basic fact that this disease is only the antibodies at

work, and that we have a perfectly functioning thyroid... well then our

choice of treatment is not based on TRUTH.

And we are never 'cured'.

It takes a really long time to learn to follow the money, and the new

patients can not take the time to do that. It is up to us old timers to help

them, and the 'money' only helps US .

Then we are better prepared to see why the newbies are getting confused.

Thank you very much for your support. It means a lot coming from one of the

veterans of the Graves' wars. Which should not even have to exist. ~sigh~

-Pam L-

[Guest guest]

> GRAVES' DISEASE — The primary goal of radioiodine therapy in Graves'

> disease

> is to cure the hyperthyroidism. It is controversial, however, whether

> radioiodine should be given in sufficient dose to induce

> hypothyroidism or

> in a lower dose in an attempt to achieve a euthyroid state [2].

>

This statement pisses me off.

jae

[Guest guest]

Good Morning Jae !

You said:

> GRAVES' DISEASE — The primary goal of radioiodine therapy in Graves'

> disease

> is to cure the hyperthyroidism. It is controversial, however, whether

> radioiodine should be given in sufficient dose to induce

> hypothyroidism or

> in a lower dose in an attempt to achieve a euthyroid state [2].

>

This statement pisses me off.

jae

****

Boy !

Do I ever agree !

This is the reason I was so very angry last night. Anyone that believes this

is a wonderful site, with ACCURATE information, is not paying very close

attention, or their motives are questionable.

This is the reason I sat here and spent a lot of my time, trying to help

others SEE where the " sins of omission " are located on this site.

I am so glad you were able to see this also. It is very hard for us to sort

through so much information when we are still new.

We 'oldies' will continue to to try to help all of you learn to think for

yourselves. Anytime you wonder about something, please speak up, as most of

us have full time stuff going on in real life, and we could miss something.

Thank you for your comment. :-)

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Pam,

What pisses me off is different than you think.

I would never known that there is a controversy about the goals of RAI

if I didn't read it in the article you don't like. So I like the

article. I wouldn't have been told about it by my doctor. In fact,

that was the first time I ever read about a controversy. Freakin' A.

I've been reading about Graves now for two weeks and I never knew there

was a controversy.

Jae

[Guest guest]

Jae

Anybody would like the article IF all those facts were true.

Please continue researching.

-Pam L- who very well understands 'wanting' to believe there is any cure or any

way at all to have a fast easy fix.

[Guest guest]

Hello Pam,

I posted the article on ATDs and was not much concerned about what

the links contained. I do believe, however, that to make an informed

decision, one should read ALL points of view. I also believe that most

people will come up with the solution that is best for them if given the

opportunity. No one needs to be guided away from " slants " .

>>> pladd@... 08/10/03 12:38AM >>>

Now... Lets go back to the original hyper page.

I am going to list some of the errors I see.

*

Antithyroid drugs (also called thionamides) are used to treat an

overactive

thyroid (hyperthyroidism) caused by Graves' disease, an autoimmune

condition

These drugs block the synthesis of thyroid hormone by the thyroid

gland.

They may also help control the disease by indirectly affecting the

immune

system.

May help ?

*

Long-term treatment is associated with a remission of Graves' disease

in 30

percent of patients.

This is a very LOW estimate.

Here is a quote from the rest of the article.

— The likelihood of remission may increase with the duration of

treatment. In the United States, doctors currently recommend one to two

years of antithyroid drug treatment followed by re-evaluation of the

activity of Graves' disease, but in some countries remission rates are

doubled by prolonged treatment, eg, 10 years.

*

The use of antithyroid drugs has several benefits but some risks.

That's funny... nowhere did they use this word RISK in their RAI

information

WE should all know the possible side effects of ATDs so that we can

recognize them if they should occur. This article does not deal with

RAI.

The RAI information does not come from the same source. Should I have

censored it and not included the links?

*

MMI can be administered once per day.

ALL MMI drug inserts, and PRDs say this drug must be taken 3 times a

day.

Monitoring — Doctors usually monitor the effectiveness of antithyroid

drug

treatment by checking blood thyroid hormone levels periodically. This

monitoring includes measurement of T4, T3, and thyroid-stimulating

hormone

(TSH) levels. Antithyroid drugs typically reduce levels of both T3 and

T4,

but levels of T3 may take longer to return to normal in some people.

TSH

levels usually take the longest to return to normal.

Again... If these tests are used to monitor the patient will NEVER feel

good

Then it is a matter of how long they can tolerate being ill before

they

think the word 'cure' is sounding pretty darn good.

*

This one is most puzzling to me. When I took ptu, it was monitored

every 3 months using these tests, most especially T3 and T4. I never

felt sick at all.

PROLONGED REMISSION — About 30 percent of people who take an

antithyroid

drug for one to two years will have prolonged remission of Graves'

disease.

It is not known for sure if the antithyroid drug plays an active role

in

this remission, or if it simply controls hyperthyroidism until

spontaneous

remission occurs.

Factors associated with prolonged remission — It is not possible to

tell for

certain which people with Graves' disease will achieve prolonged

remission

with antithyroid drug treatment. However, several factors seem to play

a

role in prolonged remission.

Once again lacking in any facts and very misleading in my opinion.

*

The nausea and vomiting may depend on the amount of drug taken in each

dose;

therefore, spreading large total daily doses out over the day might

reduce

these side effects.

This nausea is mentioned several times throughout. But there are no

side

affects listed for RAI at all.

Again this article does not address RAI.

The spreading the doses out through the day is only mentioned as

something

one can try if they are too SICK.

Nausea is often a sign of too much medication . This is not said.

The true reason for spreading the dose every 8 hours is to keep

thyroid

levels stable, which prevents other diseases / conditions. Stable

levels of

antithyroid drugs are the ONLY way to remove the antibodies which ARE

Graves

disease. There is nothing wrong with our thyroid. It is healthy and

responding properly to the signals the body is sending it.

This FACT is not mentioned.

I think this may be enough to show our new members we MUST question

everything. And often these things are simply a huge slant, that while

lacking outright lies... because they can not get away with that, will

heavily influence a new patients choice of treatment.

If anyone, as a child told little white lies of omission, they can see

many

of these web sites can easily do the same thing.

I stand firm on my ground.

This web site does NOT reflect any of the hard earned knowledge we as

a

group has acquired, and are willing to share.

I also really resent the " .. Did you really read it? " comment.

Sorry, I often skim articles and even posts. This one I read

completely and carefully. I certainly interpreted it as pro ATD's.

Anyway, I am removing myself from Graves support.

Aileen

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

The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

Please consult your doctor before changing or trying new treatments.

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

DISCLAIMER

Advertisments placed on this yahoo groups list do not have the

endorsement of

the listowner. I have no input as to what ads are attached to emails.

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------

[Guest guest]

Aileen,

>> I posted the article on ATDs and was not much concerned >>about what

>>the links contained.

They are not links. They are 'chapters of the same article.'

>>I do believe, however, that to make an informed

>>decision, one should read ALL points of view. I also believe that >>most

>>people will come up with the solution that is best for them if given >>the

>>opportunity.

That is the whole point of this list. The reason we exist !

>>No one needs to be guided away from " slants " .

I did NOT guide they away.

I posted the link AND portions of the article here, for all to SEE.

I do feel it is my moral responsibility as a fellow Graves' patient to

point out the most obvious errors, as a learning tool for the newer members.

If you have any other problems with me, please feel free to contact me off

list, as any future 'disagreement' is not conductive to the well being of

the list, especially our newer members that are still sick and confused.

Personality conflict has nothing to do with the facts being

presented.

Given the hormone rides this disease puts us on, it is amazing we all get

along as well as we do. :-)

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.