Re: Back to the Basic Question

[Guest guest]

I am resisting RAI because I am a widow who lives alone and is entirely

self-reliant/responsible. I understand that serious depression is a given

after RAI. People who live alone, without a support system, must of

necessity be careful about jeopardizing mental acuity. If my husband were

still alive and could manage *for* me as I suffered from serious depression

it might possibly, though unlikely, be a consideration.

I also understand exacerbation of my TED is very likely. I understand that

those who have not experienced TED may experience it after RAI.

I also do not have a prescription benefit which will cover high-cost

designer anti-depressant drugs.

I have two sisters who are hypo, and I assure you that I far prefer the

alertness of hyper to the sluggishness of hypo as their doctors attempt to

find a proper dosage.

For some reason American medicine is very high on RAI. I do not believe

that other countries are so quick to jump on it as the immediate solution.

I had problems for about four months reaching the correct PTU dose, but once

reached, I seem to remain reasonably level. I would recognize the symptoms

I had, hand tremors, heart palpitations, sweats, fine motion loss, muscle

weakness in thighs and upper arms, and am watchful that the PTU is working.

I also take calcium supplements because of concern of bone loss. I do

demand quarterly blood tests from the HMO, and am blessed with a willing

internist who authorizes them. I am not overly convinced I should remain

with the endocrinologist who is pushy about the RAI since I believe he finds

RAI to be the *easy* management of my condition. That makes me very wary of

how *easy* it would be for him to manage hypo after an RAI.

From everything I know, RAI is a relatively simple procedure, in my case it

would be handled over two days as an outpatient (most of it spent in sitting

and waiting) in a hospital's radioactive materials lab unit. Since the

option would always be there, I see no reason not to wait, stay on PTU, and

see if a remission occurs.

Elaine

Researching Bohemian Surnames

S L E P I C K A and H R U S K A

Back to the Basic Question

> Aside from the fact that one is purposely killing an important

> God-given organ, can anyone list some specifics about why one should

> not go the RAI route? <snip>

[Guest guest]

Dear Doug,

Welcome to the narrow vision of modern medicine. As a nurse I wore those

blinders for twenty years, but slowly my respect for the medical profession

has slowly and surely been chipped away. I believe I have some of the best

Drs. in my area, yet they are so convinced that the " reality of the medical

model " is the only reality, that it makes me wonder if I should entrust

myself to their care at all.

I'm not sure if I'm feeling this way after 3 miscarriages some of which

might have been avoided if they'd have listened to me and checked my

antithyroid antibodies when I asked them to. However, since then I find

them to be a brick wall when I attempt to work together with them to solve

the health problems of my family. I'm beginning to think that they realize

their " limitations " but don't recognize they are part of the problem with

that limitation, but their dependence on pills and surgery for every aspect

of medicine. Though I feel like a total novice with herbs, I feel more

confident in their ability to heal right now, than those brilliant Dr.'s

pills who's side effects are far worse than any of the herbs I've researched

at this point. However the fact that we can't take immune system builders

or any herb with iodine does make this whole thing a challenge.

Is RAI radiation or surgery? I " m still mixed up with the abreviations. Is

it the surgery that can make your eyes get worse, or is that radiation? I

know many people on thyroid medications who don't feel like they have a

problem in the world, in fact they never had symptoms before their Dr. put

them on it. Is it different for us hypers?

I also must admit that I " m wondering if the emphasis on all the things " we

can do " is not all that different from the Dr.'s obsession to focus on " all

they can do " . Are we in a power battle here? I'm beginning to wonder if

I'm forgetting the most important one of all- God, the one who is ultimately

in control of all healing. He's allowed us to succumb to this illness and I

believe He works all things together for the good of those who love Him and

His son Jesus. (Soap box ended). I'm just realizing how " out of control "

this disease makes me feel and how little I want to give the control to

anyone at this time. Is this a symptom of our disease or the personalities

that got us here in the first place.

Done rambling (Still in my storm, sorry for the wordiness),

Le Ann

[Guest guest]

I appreciated all that you had to say in this email. It made a lot of sense

and inspirational as well. Might I just add, for what it is worth that I

have learned in the two years that I have been diagnosed with Graves, not to

pay to much attention to this disease. I know that may sound trite and

impossible at times, but I have found that it does work for me. I try not to

focus on the negative aspects although it can be very hard especially when

every area of your being is affected by it in one way or another. I am

thankful to God that I am now in a remission and have been shortly for the

past two months. I pray all the time that it continues but have no illusions

that it might not. I guess I just wanted to say that it helps a lot if we

all realize that we are not this illness, we are so much more than it as I

am sure you all know. I like to constantly remind myself of this as it help

me a great deal. My puffy eyes are a constant reminder of Graves when I look

in the mirror but I try to look past the puffiness each day and think it

could be far far worse as it has been in the past two years. Thanks for all

of the positive inspirations I read in many of the emails. It makes a big

difference in my world.

Carolann

[Guest guest]

RAI is radioactive iodine, it is not surgery. Most hyper are treated with

RAI. Surgery is usually used for nodules and cancer, it can be partial,

total, sub-total in nature. Following are direct quotes from a Canadian

Thyroid Association paper :

" This form of treatment of hyperthyroidism by radioiodine has been used

routinely for more than 35 years on well over one million patients in the

United States alone. Many studies of people treated and examined at a later

time show no harmful side effects or complications to the patients or their

offspring. Radioiodine is now recognized as the safest, least expensive, and

most convenient and effective treatment for hyperthyroidism. In the United

States approximately 90 percent of hyperthyroid patients are treated with

radioiodine. "

" In view of its safety, convenience, low cost, and effectiveness, most

hyperthyroid patients and their physicians in the United States select

radioiodine as the definitive treatment of choice. "

Originally published in The Bridge Vol. 7, No. 4, 1992

My own opinion is that my HMO must love the fact that is is convenient, low

cost and effective <grin>. What they don't tell you is that you are hypo

after RAI and you can pick up the tab on the medicine you will need the rest

of your life.

I am not certain that RAI makes TED worse. I believe that TED may be

associated more frequently with hypo. Therefore, deliberately using RAI to

become hypo doesn't make much sense for a person already dealing with eye

disease. There seems to be an increase in eye problems *after* RAI, but

which comes first, the chicken or the egg, I don't know. I doubt that the

medical people do either.

Elaine

Re: Back to the Basic Question

> Is RAI radiation or surgery? I " m still mixed up with the abreviations.

Is

> it the surgery that can make your eyes get worse, or is that radiation? I

> know many people on thyroid medications who don't feel like they have a

> problem in the world, in fact they never had symptoms before their Dr. put

> them on it. Is it different for us hypers?

>

[Guest guest]

I am not clear that M.D.'s understand all the mechanism that control the

thyroid. The body is so complex. So, i find difficulty wanting to allow

allopaths to surgically remove an organ when they don't understand

entirely how it functions.

J in Vermont

+====>>>>>>=====>>>>>>>>........<<<<<<<<<=======<<<<<<<<==========+

" Truth is a shining goddess, always veiled, always distant,

never wholly approachable, but worthy of all the devotion

of which the human spirit is capable. " Bertrand

+====>>>>>>=====>>>>>>>>........<<<<<<<<<=======<<<<<<<<==========+

On Mon, 24 Jan 2000, Doug wrote:

> Aside from the fact that one is purposely killing an important

> God-given organ, can anyone list some specifics about why one should

> not go the RAI route? I've seen some generalities regarding GI

> problems, but little in the way of specifics. I'm still digging

> through the archives of this site, though.

>

> My own immediate negative reaction to RAI centers on the fact that a

> person must rely on an additive for the rest of her life for survival.

> This is certainly significant, but if RAI can restore a normal life,

> except for dependence on synthetic thyroxin, is this such a great price

> to pay?

>

> There must be a number of other consequences, demonstrated by the many

> factual and emotionally-charged posts to this group.

>

> All of our professionals assisting on this problem are recommending

> RAI. They say it's a no-brainer. For the most part, they are also

> quite arrogant and seem to be wearing blinders to non-AMA knowledge.

> Aside from those negatives, they are quite intelligent and learned.

> What's going on here?

>

> Seeking understanding,

>

> -- Doug

>

>

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

> For the fastest and easiest way to backup your files and, access them from

> anywhere. Try @backup Free for 30 days. Click here for a chance to win a

> digital camera.

> 1/337/5/_/6563/_/948763763/

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> -- ChatPage?listName=hyperthyroidism & m=1

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>

>

[Guest guest]

Yes, I agree, but RAI and worsening TED appear to be connected. Since I

have already undergone radiation of my eyes and prednisone treatment, I am

very unenthused about RAI exacerbating an existing condition.

Thanks again for sending the supplement lists!

Elaine

Researching Bohemian Surnames

S L E P I C K A and H R U S K A

Abstract

Background. The chief clinical characteristics of Graves' disease are

hyperthyroidism and ophthalmopathy. The relation between the two and the

effect of treatment for hyperthyroidism on ophthalmopathy are unclear.

Methods. We studied 443 patients with Graves' hyperthyroidism and slight or

no ophthalmopathy who were randomly assigned to receive radioiodine,

radioiodine followed by a 3-month course of prednisone, or methimazole for

18 months. The patients were evaluated for changes in the function and

appearance of the thyroid and progression of ophthalmopathy at intervals of

1 to 2 months for 12 months. Hypothyroidism and persistent hyperthyroidism

were promptly corrected.

Results. Among the 150 patients treated with radioiodine, ophthalmopathy

developed or worsened in 23 (15 percent) two to six months after treatment.

The change was transient in 15 patients, but it persisted in 8 (5 percent),

who subsequently required treatment for their eye disease. None of the 55

other patients in this group who had ophthalmopathy at base line had

improvement in their eye disease. Among the 145 patients treated with

radioiodine and prednisone, 50 (67 percent) of the 75 with ophthalmopathy at

base line had improvement, and no patient had progression. The effects of

radioiodine on thyroid function were similar in these two groups. Among the

148 patients treated with methimazole, 3 (2 percent) who had ophthalmopathy

at base line improved, 4 (3 percent) had worsening of eye disease, and the

remaining 141 had no change.

Conclusions. Radioiodine therapy for Graves' hyperthyroidism is followed by

the appearance or worsening of ophthalmopathy more often than is therapy

with methimazole. Worsening of ophthalmopathy after radioiodine therapy is

often transient and can be prevented by the administration of prednisone. (N

Engl J Med 1998;338:73-8.)

Source Information

From the Istituto di Endocrinologia (L.B., C.M., F.B., L.M., M.L.T., E.D.,

G.B.-B., E.M., A.P.) and the Clinica Oculistica (M.N., M.P.B., A.L.),

University of Pisa, and the Reparto di Epidemiologia e Biostatistica,

Istituto di Fisiologia Clinica, National Research Council (G.R.) -- all in

Pisa, Italy. Address reprint requests to Dr. Bartalena at the Istituto di

Endocrinologia, University of Pisa, Ospedale Cisanello, Via Paradisa, 3,

56122 Pisa, Italy.

Re: Re: Back to the Basic Question

> Elaine,

> I don't think TED is related to hypothyroidism. It is a Hyper thyroid

> symptom. I don't think Hypos have eye involvement. I am Hypo and what i

> get is blurred vision a lot, but i think that is more of an

> anemia/endocrine imbalance prob in my case.

>

[Guest guest]

> " In view of its safety, convenience, low cost, and effectiveness, most

> hyperthyroid patients and their physicians in the United States select

> radioiodine as the definitive treatment of choice. "

At least until you read this:

http://www.nejm.org/content/1998/0338/0011/0712.asp

Although one would have to read the rebuttal as well:

http://www.aace.com/pub/press/nejm.htm

Me.

[Guest guest]

I guess I just wanted to say that it helps a lot if we

> all realize that we are not this illness, we are so much more than it

as I

> am sure you all know.

Dear Carolann,

I couldn't agree with you more! When my friends ask me " how are you

doing? " sometimes I really don't know what to answer. I just had a

relapse into Grave's, but with the help of medication, I am feeling

fine. I do all the things I always used to do, with the exception that

I take better care of myself, and I am closer to myself and to others

around me.

So, to my friends' question I sometime answer " I am not well, as in I

am not healthy, but I am feeling fine, and most aspects of my life are

a source of pleasure, and delightful challenge " . It is exactly the way

I feel and the way I answer to this question.

Youli

[Guest guest]

Dear Doug,

I received RAI in May 99. It has been a slow return to " normal " . Now I am

suffering with eye disease. My research doesn't clear up if I would have

gotten the eye disease with or without RAI. My suggestion to you is to

research RAI on eye disease. This has been my only draw back.

I wish you the best,

K.

Back to the Basic Question

>Aside from the fact that one is purposely killing an important

>God-given organ, can anyone list some specifics about why one should

>not go the RAI route? I've seen some generalities regarding GI

>problems, but little in the way of specifics. I'm still digging

>through the archives of this site, though.

>

>My own immediate negative reaction to RAI centers on the fact that a

>person must rely on an additive for the rest of her life for survival.

>This is certainly significant, but if RAI can restore a normal life,

>except for dependence on synthetic thyroxin, is this such a great price

>to pay?

>

>There must be a number of other consequences, demonstrated by the many

>factual and emotionally-charged posts to this group.

>

>All of our professionals assisting on this problem are recommending

>RAI. They say it's a no-brainer. For the most part, they are also

>quite arrogant and seem to be wearing blinders to non-AMA knowledge.

>Aside from those negatives, they are quite intelligent and learned.

>What's going on here?

>

>Seeking understanding,

>

>-- Doug

>

>

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

>For the fastest and easiest way to backup your files and, access them from

>anywhere. Try @backup Free for 30 days. Click here for a chance to win a

>digital camera.

>1/337/5/_/6563/_/948763763/

>

>-- Check out your group's private Chat room

>-- ChatPage?listName=hyperthyroidism & m=1

>

>

>

[Guest guest]

doug jones

i have the same questions.

nursing yourself back to health via herbs, antithyroid drugs, acupuncture,

etc.... all seem fine and may actually work for some.... but...

in my case, at least according to my doctor, remission is out of the

question. my levels (should probably learn actual numbers) are completely

too high to hope to recover.

plus, i have noticed so many talking about remission, yet always seem to get

elevated levels and graves back after a year. some of those people end up

going with RAI anyway. by taking RAI now, will we be saving ourselves the

years of trouble and ill health? i am curious what you think.

from WA state

notsed8@... (feel free to write)

[Guest guest]

elaine

a very good post! everything aside, all of us feel pressure about RAI and

the biggest decision anyone can make with this disease, i think, is RAI or no

RAI. i am facing this question. later, the decisions on which herbs to use

or what ATD to use are important decisions, yet i truly feel the RAI decision

will determine the course of your life in relation to the disease.

thankyou for your comments

from WA state

[Guest guest]

Le Ann,

I am so happy to " meet " you. I wish more people in the medical

community would realize the limitations of the medical model. My

biggest problem with most of the doctors I have seen is that they think

what they know is the extent of what there is to know. This doesn't

mean I don't value a lot of their work, it just takes a lot of the good

out of it. You are so insightful and courageous. I wish I met more

people like you.

Siuan

" elh " <el-@...> wrote:

original article:hyperthyroidism/?start=37

38

> Dear Doug,

> Welcome to the narrow vision of modern medicine. As a nurse I wore

those

> blinders for twenty years, but slowly my respect for the medical

profession

> has slowly and surely been chipped away. I believe I have some of

the best

> Drs. in my area, yet they are so convinced that the " reality of the

medical

> model " is the only reality, that it makes me wonder if I should

entrust

> myself to their care at all.

>

> I'm not sure if I'm feeling this way after 3 miscarriages some of

which

> might have been avoided if they'd have listened to me and checked my

> antithyroid antibodies when I asked them to. However, since then I

find

> them to be a brick wall when I attempt to work together with them to

solve

> the health problems of my family. I'm beginning to think that they

realize

> their " limitations " but don't recognize they are part of the problem

with

> that limitation, but their dependence on pills and surgery for every

aspect

> of medicine. Though I feel like a total novice with herbs, I feel

more

> confident in their ability to heal right now, than those brilliant

Dr.'s

> pills who's side effects are far worse than any of the herbs I've

researched

> at this point. However the fact that we can't take immune system

builders

> or any herb with iodine does make this whole thing a challenge.

>

> Is RAI radiation or surgery? I " m still mixed up with the

abreviations. Is

> it the surgery that can make your eyes get worse, or is that

radiation? I

> know many people on thyroid medications who don't feel like they have

a

> problem in the world, in fact they never had symptoms before their

Dr. put

> them on it. Is it different for us hypers?

>

> I also must admit that I " m wondering if the emphasis on all the

things " we

> can do " is not all that different from the Dr.'s obsession to focus

on " all

> they can do " . Are we in a power battle here? I'm beginning to

wonder if

> I'm forgetting the most important one of all- God, the one who is

ultimately

> in control of all healing. He's allowed us to succumb to this

illness and I

> believe He works all things together for the good of those who love

Him and

> His son Jesus. (Soap box ended). I'm just realizing how " out of

control "

> this disease makes me feel and how little I want to give the control

to

> anyone at this time. Is this a symptom of our disease or the

personalities

> that got us here in the first place.

> Done rambling (Still in my storm, sorry for the wordiness),

> Le Ann

>

[Guest guest]

Dear Carolann,

Ditto!

Le Ann

[Guest guest]

Thanks Le ann :c)

Carolann

[Guest guest]

>I wish more people in the medical

community would realize the limitations of the medical model. My

biggest problem with most of the doctors I have seen is that they think

what they know is the extent of what there is to know. This doesn't

mean I don't value a lot of their work, it just takes a lot of the good

out of it. You are so insightful and courageous. I wish I met more

people like you.<

Thanks I needed that!

Le Ann

[Guest guest]

Dear from Washington State,

Have you tried bugleweed? (it is a specific herb for hyperthyroidism). I

may be completely out on a limb with this one, but I would try a

bugleweed/motherwort combination and some of the vitamins recommends

(if you can afford it) as " one more try " before RAI. I know you didn't ask

my advice,

I have early stages of this so I may not have a clue on this, but the

motherwort (which is the milder ingredient in the mix, helps my " mild

storms " but not the major ones. If bugleweed is stronger and mixed with

another antithyroid herb, it could really be a plus. If you want info on

the bugleweed, try www.allherb.com

It's so hard to know what to do. I'm still sorting it all out too, but I

know I " ve read in several places that if your Dr. is " pessimistic about your

thyroid problem, find a different Dr. " I " m in the process of looking and

finding it " ultra hard " .

I'll be praying for your decision and for the Lord to guide you to His best

for you.

Le Ann

[Guest guest]

Please don't think for a moment I did any more than quote the article. I

did so tongue in cheek because I think an HMO or other (mis) managed care

system must have had a hand in it.

I have NOT submitted to RAI although it has been the suggested course of

treatment for almost two years.

Elaine

Researching Bohemian Surnames

S L E P I C K A and H R U S K A

Re: Back to the Basic Question

> > " In view of its safety, convenience, low cost, and effectiveness, most

> > hyperthyroid patients and their physicians in the United States select

> > radioiodine as the definitive treatment of choice. "

>

> At least until you read this:

> http://www.nejm.org/content/1998/0338/0011/0712.asp

>

> Although one would have to read the rebuttal as well:

> http://www.aace.com/pub/press/nejm.htm

>

[Guest guest]

i've figured out RAI and ATD but i still don't know what PTU means. Will

someone help?

[Guest guest]

It *is* an ATD. It is also unpronounceable so everyone uses the

abbreviation. " propylthiouracil "

Elaine

Researching Bohemian Surnames

S L E P I C K A and H R U S K A

Re: Back to the Basic Question

> i've figured out RAI and ATD but i still don't know what PTU means. Will

> someone help?

[Guest guest]

Doug wrote:

> Aside from the fact that one is purposely killing an important

> God-given organ, can anyone list some specifics about why one should

> not go the RAI route? I've seen some generalities regarding GI

> problems, but little in the way of specifics. I'm still digging

> through the archives of this site, though.

>

> My own immediate negative reaction to RAI centers on the fact that a

> person must rely on an additive for the rest of her life for survival.

> This is certainly significant, but if RAI can restore a normal life,

> except for dependence on synthetic thyroxin, is this such a great price

> to pay?

It might be an important natural organ but mine was haywire and I really don't

miss it. For many people, like myself, RAI was worth it. Yes, I have switched

one disease for another, but I believe the one I now (don't) suffer from is

less dangerous than being hyper. I take my levothyroxin every day and that's

it. It doesn't have the side effects that can occur with ATDs.

At this point many years later I suffer no side effects from the RAI. I

consider myself " cured, " with the caveat that I may have other autoimmune

problems or develop TED, both of which could have happened anyway. I feel much

more normal now. But, that's only my experience. Everyone is different.....

Thanks for all the info,

Amy

PS The only thing I miss about being hyper is being able to eat and not gain

weight...

[Guest guest]

Dear Amy,

Finally, I hear from someone satisfied with RAI. I was beginning to worry

since I took RAI in May 99. I feel much better now. I am not cured but, I

am hopeful that I am headed that way. My tsh is rising slowly. It is still

low which means I am hyper. But, many of my symptoms have stopped. The

falling out hair, temors, heat flashes, nervousness, the foggy feeling among

other things. I am trying to approach this thing the best I can. And that

means not second guessing my decisions. After reading some of the posts

regarding RAI, I was scared. After reading your post, my mind is at ease.

Everyone has to do what they think is best. TED may occur without RAI. TED

is because of the thyroid. RAI may aggravate it. I think the jury is still

out on the topic. I do have TED although mild. I continue to reduce stress

and remain positive. I wish you the best with your battle. If you would

like to contact me, I am at temk@...

K.

Re: Back to the Basic Question

>Doug wrote:

>

>> Aside from the fact that one is purposely killing an important

>> God-given organ, can anyone list some specifics about why one should

>> not go the RAI route? I've seen some generalities regarding GI

>> problems, but little in the way of specifics. I'm still digging

>> through the archives of this site, though.

>>

>> My own immediate negative reaction to RAI centers on the fact that a

>> person must rely on an additive for the rest of her life for survival.

>> This is certainly significant, but if RAI can restore a normal life,

>> except for dependence on synthetic thyroxin, is this such a great price

>> to pay?

>

>It might be an important natural organ but mine was haywire and I really

don't

>miss it. For many people, like myself, RAI was worth it. Yes, I have

switched

>one disease for another, but I believe the one I now (don't) suffer from is

>less dangerous than being hyper. I take my levothyroxin every day and

that's

>it. It doesn't have the side effects that can occur with ATDs.

>

>At this point many years later I suffer no side effects from the RAI. I

>consider myself " cured, " with the caveat that I may have other autoimmune

>problems or develop TED, both of which could have happened anyway. I feel

much

>more normal now. But, that's only my experience. Everyone is

different.....

>

>Thanks for all the info,

>Amy

>PS The only thing I miss about being hyper is being able to eat and not

gain

>weight...

>

>

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

>Save 50% at MotherNature.com! See site for details.

>1/766/5/_/6563/_/948929543/

>

>-- Check out your group's private Chat room

>-- ChatPage?listName=hyperthyroidism & m=1

>

>

>

[Guest guest]

thanks leann

i have just finally successfully saved john's info on supplements. i will go

to the co-op and pick up some motherwort and bugleweed. my boyfriend makes

what is called 'happy tea', which includes herbs we like to take, including

st. johns wort in the winter. he dropped all immune boosters, at least until

the verdict is out(whether or not it will hurt my condition). do you think

it would be ok to put these two new herbs in with the rest? he makes an

infusion and then adds a light juice. this would be easiest for me.

mary wa

[Guest guest]

Dear MA,

Have you had a problem with the tea causing an increase in symptoms in the

past? I guess there are some herbs that don't go well together, but I don't

know how to know this. If you tell me what is in there I am calling a

friend tommorrow who may have the answer.

Le Ann

[Guest guest]

Le Ann

right now the combination is st.johns wort, hawthorne berry, shizondra berry,

and a touch of licorice. thanks for asking your friend!

WA

[Guest guest]

Dear ,

I never heard of Schizondra berry, but I know the licorice is good for

digestion and also for our glandular problems. I asked my friend about

mixing herbs and she said keep the same herbs for the same problem. For

example, if all these herbs help relieve your thyroid problems, adding more

thyroid herbs to the mix should be fine.

Hope this helps,

Le Ann