graves

[Guest guest]

Dear Amy,

My thyroid levels have been normal for about 2 1/2 years after a short bout

w/Graves, and I consider myself cured. Of course, I don't know what will

happen in the future, but it certainly pays to be optimistic.

About the grey hair, I had my first white hair at age 12, and began dying my

hair at age 24 at the suggestion of friends and co-workers (who thought I

looked too young to have so much grey).

Regards,

AntJoan

[Guest guest]

Dear AntJoan; I'm just coming out of my 2nd serious bout with GD with the

help of Tapazole, the suppliments, accupuncture and Chinese herbs. Although

my hair didn't exactly get gray, it lost most pigment and became very thin

over about 20yrs. In retrospect, I was severely hypo all that time till the

first episode of Graves about two yrs ago. In the interim, I was slightly

hypo which my endo referred to as " remission. " I'm 5'1 " and have been pretty

slim all my life, but dropped nearly 20 lbs. this last time taking me to

less than 100 lbs, for a little while. During this second recovery, I feel,

deep in my gut that I'm really getting better. I have some not-too serious

TED which I didn't recognize as part of GD till I came to this board. I've

learned so much here, I'm eternally grateful. I understand now why my body

is practically bald, head hair thin and baby fine, and why I've lost all

pigment in any hair except some on my head. I'm totally resistant to rai. My

endo looked at the list of suppliments and just shook his head. He's a good

guy, gave me no argument. Peace and Health, '

[Guest guest]

, I know it may be a little uncomfortable but continue to search for

the right doctor. I've had four doctors in four years!!! The second ENdo

kept telling me I was fine but in the meantime my heart rate went up, my

eyes bulged, weight went down, etc. I knew something was wrong so went to

my internist. She called in two days and told me I was HYPER and to go back

on meds!!! I knew it!! I called the Endo back and told him about the tests

results....he still insisted I was probably just depressed. I screamed into

the phone that I wanted a prescription and got it! I then moved on to

another doctor (3rd one pushed RAI and wouldn't listen), finally found an

Endo who is from Europe and has a different attitude about meds and RAI.

Doctors often forget that we pay THEM, not the other way around! Take care

of yourself, you have lots of support here! Mona

Graves

Hello,

I want to thank everyone for giving me the courage to fight for the proper

medical treatment. It hasn't been easy ... I was always taught that Dr.

knows best and getting out of that mind set isn't easy.

At present I'm fighting to find a doctor that will listen to my health

concerns, and not pooh-pooh my ideas. I just called my regular doctor for a

referral ... and I could tell by the reception that I received that I'm now

known as one of those " problem " patients. The reason for my change is I

finally convinced my doctor to put me on Armour and I feel a bit better but

I think the dose is to low. My doctor did a TSH and now wants to lower my

medication, I tried explaining to her that I needed a T3 and T4 with Armour

.... and I again got that ... well I'm not comfortable doing those tests,

excuse. I can't believe that she wont just do the darn blood work ... but

hey who am I to make her feel " uncomfortable " (like I haven't been

uncomfortable the last 5 years when they've been messing with my dosages!)

Any way ... I think I'm getting my referral ... and hopefully this new

doctor will be someone who listens to his patients.

*Grin* and hopefully I wont be viewed as a problem! Patients that change

doctors a lot are often viewed as hypochondriacs and problems. I think

that's what keeps us all in the slots that the medical field wants us in,

because no one wants to be noted for being difficult.

So thanks again for helping me take a stand! I know I never would have done

it without all the information that I have gathered from all of you!

H.

When you have robbed a man of everything, he's no longer in your power. He

is free again.

- Solzhenitsyn

http://www.dmcom.net/hawkings/

http://www.geocities.com/mysteryfriends/index.html

ICQ 14508326

AOL IM 23278

MSN IM alura_02@...

[Guest guest]

Hi Billie,

what was your T3?

T3 is often falsely elevated, and FT3 is a better indicator since only the

free thyroid hormone is available to react with your body's cells. I don't think

I'd stick with a doctor who doesn't realize the role of alternative medicine

in healing. Most of the top medical schools today, like Harvard, offer courses

in alternative medicine, spiritual healing, etc. and they encourage doctors

to combine healing therapies.

Symptoms are also more important than lab results. Take care, Elaine

[Guest guest]

In a message dated 5/29/2003 11:11:45 AM Eastern Daylight Time,

tngchrt@... writes:

> I hear that others are taking herbal supplements to help heal,

Dear Billie,

Welcome! You can check out iThyroid.com for info on supplements. When I had

Graves, I took Tapezole and Atenenol while working to heal naturally with

supplements, nutrition, acupuncture, as I was told it is dangerous to your heart

to be hyperT. I found this combination worked for me.

Check out iThyroid and let us know what you think, OK?

Best,

AntJoan

[Guest guest]

In a message dated 5/29/2003 7:54:30 PM Eastern Daylight Time,

winMoreLess@... writes:

> The key point here is you need to cooperate

> with your doctor. They know much better than you as regard to your

> illness.

Billie,

I have found most doctors know almost nothing about Graves disease. Most

just push for RAI, which does not address any underlying causes of the

illnesses,

and causes problems of its own.

This board was founded 6 years ago by , who also developed the iThyroid

site, in order to find ways to cure thyroid disease naturally. I have been

with this list since the beginning, and most everyone we've heard from has had

bad experiences with the medical profession, which does not embrace a holistic

or preventative view of health. The prevailing wisdom here is to listen to

one's body, not to the doctors. We can work with doctors, but WE have to be in

charge, not them. It seems you already know this, and that your doctor does

not want to cooperate. This is a drag, I know. Hopefully you can find a doctor

who is open-minded, and respectful of your wishes, and of your knowledge of

your own body.

AntJoan

[Guest guest]

Hi,

I totally agree with Joan. A perfect example is a post on another board where

the doctor says its impossible to have an elevated FT3 and a normal T4. The

doctor insists this is a lab error. Sadly, T3 thyrotoxicosis, which is what the

patient has, is a well known syndrome in Graves' disease. Patients need to be

proactive and keep records of their own lab results. The newly revised HIPPA

guidelines were developed to protect patients' rights as well as their privacy.

Joan, I heard back from and he is focusing on re-establishing his

business and studying the role of nutrition in cancer. When he's caught up, we

should hear back from him. Elaine

[Guest guest]

Thanks again AJ.....

Being on this list that long, you must have read alot of stories! Can you

tell me if alot went or have gone into remission? And stayed in remission?

Your right about my Dr... but I must see if she responds... if not.. I'll

find another. Haven't gone back to my primary since I saw the endo.. the endo

is

also my primary's Dr.... she has Hashimoto (?) Primary is an osteo.... so

SHOULD be sympathetic and supportive.. don't you think? We'll see.

Billie.

Checking out the website now... will let you know how I feel about

it..........

[Guest guest]

Hi Billie,

I think you best listen to your doctor's suggestion. If you doctor

really think it's necessary for you you should follow advice. If you

doubt your doctor's ability you can look for second opinion from

other doctors by referal. The key point here is you need to cooperate

with your doctor. They know much better than you as regard to your

illness. Please do your best at the same time to search and improve

yourself knowledge of GD. The main reason is you will realize who is

a good doctor. Who can understand you better.

Best of health,

remote light

> Hi folks,

> I'm new to the group and looking for some support and information

> about Graves. I was diagnosed a few weeks ago... no particular

> symptoms except hair loss...(been experienceing this for a while...

> thought it was cause I'm 51 and going thru menopause). My gyno

> noticed my throat being enlarged.. I had no idea!

> Saw my primary... then an endo, who suggested I take one of 2 pills

to

> regulate my thyroid. My T3 is up to 1004, and my TSH nil. She was

> alarmed to hear I am seeing a homeo/accup fellow to try to deal with

> this naturally. Basically, after thinking about it, she called me

and

> told me I was wasting my time in doing this and that I am in danger

> with my T3 so high. Threatened to drop me as a patient. I then

> emailed her and said that I need to make my decisions about my

health

> and that I believe the problem is not my thyroid but something else

> going on that I need to figure out and deal with. I would

appreciate

> her support, but if she feels she needs to drop me, then so what

she must.

> She does have me worried.....

> Anyone else have their T3 that high? Is this extremely high?

> I feel the naturo that I am seeing is helping me. He finds that my

> ovaries need more tending to than my thryroid...

> I hear that others are taking herbal supplements to help heal, those

> who are, can you tell me what you're taking and what are your

> circumstances?

> Thanks for being there for support.

>

> Billie

[Guest guest]

Hi:

With my experience at the hospital a few days ago with the endo, I could

tell he clearly was not interested in alternative therapies. All he

pushed for me to get was an RAI. By asking him many questions, I felt

he really didn't know anything about Graves disease and that he was in

too much in a hurry to do the RAI. I am at least happy that I was put

on Tapezole and Atenolol. I will always be grateful that I have taken

the time in the last couple of years to find out about my disease.

Now that I've been able to think clearly in the last couple of days,

I've been busy with my search on Internet. I was previously seeing an

ND. He didn't know too much about hyperthyroidism as he did with

hypothyroidism. So my decision was to look for another doctor who could

prescribe medicine for me as well as to do alternative therapies. I

found this doctor through the about.com/thyroid. He is an NMD, can

prescribe medicine for me as well as doing alternative therapies. I

have seen him advertise his practice through a monthly healthfood store

newsletter that I've been subscribed to for at least five years. I feel

that since seeing his name in the about.com and reading that he

specializes in all thyroid disorders, I felt I was meant to find out

about him and make an appointment to see him. You should've seen the

way I was quizzing the receptionist yesterday afternoon by phone. I

asked if this doctor could prescribe medicine. She said yes. Does he

work with patients who have hyperthyroidism, yes he does.

I will post an update next Tuesday after my appointment with this new

doctor. I will be anxious to find out how it goes and how he can help me.

[Guest guest]

Just my opinion but I believe the insurance companies and pharmacutical

companies are the ones calling the shots with medical decisions. Doctors

pushing

for RAI was probably being told that's the line to take and the choice they

must give their patients. I get the impression drs. have guidelines set out by

the health insurance industry.

The insurance companies have probably found that it's cheaper for a patient

to have RAI and then at some point onto thyroid meds. Versus using ATD, beta

blockers and various other heart and blood pressure meds. Probably by their

narrow definition, RAi is considered a cure versus staying hyper and having to

deal with the various hyper symptoms that come along.

Sandy

[Guest guest]

In a message dated 5/29/2003 11:17:08 PM Eastern Daylight Time,

tngchrt@... writes:

> Can you

> tell me if alot went or have gone into remission?

Dear Billie,

People have reported getting better, but I'm sorry I don't know the number.

I think a handful, but it may be more. Lots of people who got better might

have just left the site. Maybe we can do an informal poll here, and ask who is

better after using meds and alternative therapies. (I consider myself cured,

not in remission.)

AntJoan

[Guest guest]

In a message dated 5/29/2003 8:21:03 PM Eastern Daylight Time,

daisyelaine@... writes:

> When he's caught up, we

> should hear back from him.

Dear Elaine,

Thanks for the update on . If you write back to him, please give him my

regards.

Thanks,

AntJoan

[Guest guest]

In a message dated 05/30/2003 8:42:00 AM Eastern Daylight Time,

AntJoan@... writes:

> Can you

> > tell me if alot went or have gone into remission?

>

> Dear Billie,

>

> People have reported getting better, but I'm sorry I don't know the number.

>

> I think a handful, but it may be more. Lots of people who got better might

> have just left the site. Maybe we can do an informal poll here, and ask who

> is

> better after using meds and alternative therapies. (I consider myself

> cured,

> not in remission.)

>

> AntJoan

>

>

> Ok, I normally just read posts, but this is where I have to comment. I am not

trying to flame here, but I think the statement that you consider yourself

" cured " is a bit misleading to someone who hasn't researched Grave's. Grave's is

autoimmune. By this statement are you implying that with meds and alternative

therapies, you have cured an autoimmune disease?

Ellie

[Guest guest]

I am in remission. This is after a second bout with Graves. I

do not consider myself cured although I sure am keeping my

fingers crossed that I am old enough that this isn't going to

happen again <smile>.

I was on PTU during the first bout (slightly more than a year in

duration), and on PTU, then Tapazole, during the second bout,

weaned from Tapazole about six months ago.

I don't consider myself cured, plan on having blood tests taken

in June to confirm that I remain in remission.

Elaine

To obtain a man's opinion of you, make him mad. --Oliver

Wendell Holmes

Hello ZOSO164

On Saturday, May 31, 2003, you wrote

> In a message dated 05/30/2003 8:42:00 AM Eastern Daylight Time,

> AntJoan@... writes:

>> Can you

>> > tell me if alot went or have gone into remission?

>>

>> Dear Billie,

>>

>> People have reported getting better, but I'm sorry I don't know the number.

>>

>> I think a handful, but it may be more. Lots of people who got better might

>> have just left the site. Maybe we can do an informal poll here, and ask who

>> is

>> better after using meds and alternative therapies. (I consider myself

>> cured,

>> not in remission.)

>>

>> AntJoan

>>

>>

>> Ok, I normally just read posts, but this is where I have to comment. I am not

> trying to flame here, but I think the statement that you consider yourself

> " cured " is a bit misleading to someone who hasn't researched Grave's. Grave's

is

> autoimmune. By this statement are you implying that with meds and alternative

> therapies, you have cured an autoimmune disease?

> Ellie

[Guest guest]

In a message dated 5/31/2003 7:01:31 AM Eastern Daylight Time,

ZOSO164@... writes:

> By this statement are you implying that with meds and alternative

> therapies, you have cured an autoimmune disease?

>

> Ellie

I guess I am implying that. I weaned myself off meds about 6 years ago, and

get my thyroid levels tested regularly. Thus far, they have been w/in the

normal range, and I am symptom-free. I don't intend to have another bout of

Graves, and maintain a positive attitude. If I do get sick again, I'll

re-evaluate.

I believe Graves is caused by an imbalance, which, if addressed, can allow us

to return to good health.

AntJoan

[Guest guest]

In a message dated 5/31/2003 7:01:31 AM Eastern Daylight Time,

ZOSO164@... writes:

> trying to flame here, but I think the statement that you consider yourself

> " cured " is a bit misleading to someone who hasn't researched Grave's.

> Grave's is

> autoimmune.

I am going to give you another answer to your nonflammable post.

You say my statement is misleading to someone who hasn't researched Graves.

I'm not sure what you mean. Are you saying that if someone has researched

Graves, then my post would not be misleading?

I am not sure what exactly an autoimmune disease is, and I don't think the

medical profession knows either. They can't explain what causes such an

illness, nor do they have any successful cures. Maybe these diseases are not

autoimmune at all, but in fact are triggered by some other mechanism, such as an

imbalance. I know has spoken of his thoughts along this line in past

posts.

As for the doctors--who someone on this list said know more than we do about

the illness--I think they don't have a clue what Graves is, or how to treat

it. They seem to want to render us all hypoT, maybe because they think it is

less dangerous and easier to treat than the hyper state. To do this, they

either encourage us to take RAI or submit to surgery, or they keep us on ATDs

for

so long that we become hypo.

In the years I've been on this list, I've heard lots of stories of patients

on ATDs for years, who have become overweight, sluggish, etc., and yet the

doctors keep them on high doses of ATDs. Or, patients are taken off ATDs all at

once, which precipitates a hyper crisis.

When I started to feel myself gaining weight, I told my endo I wanted to

lower the dose of ATDs. When he objected, I insisted he take my bloodwork,

which

would reveal that I was slightly hypo. He insisted this could not be so, but

took the bloodwork anyway, after which he said I was slightly hypo and could

lower the dose of ATDs (of course, I would have lowered it anyway, because I

could tell I was slightly hypo by how my body felt, and I REFUSE to gain

weight). After that, whenever I felt slightly hypo, I just lowered the dose

until I

was off meds.

Everyone else on this list seemed to be on ATDs forever. Maybe what I did

helped me to get well, and I would certainly recommend trying to wean off the

ATDs when one starts to gain some weight (as long as there are no hyper

symptoms). If one starts to go a little hypo again, the dose can always be

increased.

I can only say what I've learned from my own experiences, and from what I've

read here. I think we are all open-minded here, and just want to learn. When

we all compare notes, and think out loud here, we can help each other to

uncover the truths about this illness, whatever they may be.

Best,

AntJoan

[Guest guest]

In a message dated 05/31/2003 2:29:18 PM Eastern Daylight Time,

AntJoan@... writes:

> You say my statement is misleading to someone who hasn't researched Graves.

>

> I'm not sure what you mean. Are you saying that if someone has researched

> Graves, then my post would not be misleading?

>

>

Maybe my statement was too vague. I meant that someone who hasn't researched

Graves could get the impression that an autoimmune disease could be cured by

alternative therapies. I do believe you can get symptom control, maybe a long

period of remission, but cured? Someone who has researched Graves and other

autoimmune disorders would perhaps question that statement.

Ellie

[Guest guest]

AntJoan and Elaine,

Went to the ithyroid.com site.... terrific site. put one heck of a lot

of energy into putting it together. Thank you for telling me about it....

but........ my head is spinning with all the information.

I have been taking some great vitamins that I am supposed to take 3x/day,

with all the essentials... except that I realized just recently that there is no

iron in them, that I can tell, and I am notorious for not having enough iron

in my blood. But they also have iodine as potassium iodide 225 ug..... so I

probably should discontinue the minerals because of this?

I do not have heart palps... in fact I have no symptoms at all, except a

goiter, which I keep reading about with hypot.... is it normal to have a goiter

with hyperT?

I am heading to the health food store to check out vitamins.... do you know

if one can find a mineral supplement that excludes iodine?

I have many ?'s......

Billie

[Guest guest]

Hi Billie,

Glad you found 's site.

About 5 or so years ago, several large studies linked iron supplements to

stomach cancer. As a result, many multivitamins no longer contain iron. Some

companies make two identical brands, one with and one without iron.

A number of companies make multi-vites without iodine. Wal-mart has one and

there are others. Take care,Elaine

[Guest guest]

Dear Billie,

I hear your confusion, and sympathize. It's difficult to work for your own

health, but you're the only one who's going to do it.

I hope you still take ATDs while you are trying to figure out which

supplements work for you. I'm sorry I can't answer your specific questions, but

I'm

sure others here can.

Don't worry about retaining the info--just print it out, or look it up again.

I hope someone can answer your questions about goiter and iodine--2 things

w/which I have no experience.

Take care, and keep up the good work,

AntJoan

[Guest guest]

Elaine,

It seems that you are so knowledgeable on this subject. Can you tell me if

it's common to have a goiter with HyperT as well as Hypo? And is this from a

deficiency in iodine with Hyper as well? I'm still confused.

Is still on this site, perhaps he could answer these ?'s.

Thank you for responding, Elaine.

Billie

[Guest guest]

AntJoan ,

I am considering getting on ATD's... but don't really want to if I can deal

with this problem with nutrients and supplements.... accupuncture and body

work.

I appreciate your concern.... and your support.

I'm hoping someone can answer my ?'s too.

Best to you,

Billie

[Guest guest]

In a message dated 6/2/2003 7:35:36 PM Eastern Daylight Time, tngchrt@...

writes:

> I am considering getting on ATD's... but don't really want to if I can deal

>

> with this problem with nutrients and supplements

Dear Billie,

I've forgotten if you are allergic to one of the ATDs, and if this is why you

don't want to use them.

Getting well w/supplements and other alternative means is a process that can

take time. I think it is important to take the meds, including beta blockers

to protect the heart, while you deal w/the underlying imbalance.

Someone on this list said they couldn't take beta blockers, was it you? If

not, I would highly recommend the use of meds. Everyone on this list knows I

really believe in alternative medicine, but sometimes there is a need for

Western medicine, too.

Best,

AntJoan

[Guest guest]

One can not rule out TSI antibodies because they are hypothyroid.

TSI antibodies - are Thyroid stimulating antibodes - and are one

component of TSH receptor antibodies.

TSH receptor antibodies can comprise three types - blocking or

binding or stimulating.

whether you are hypo or hyper from these antibodies depends on which

one is predominating. blocking dominating can make you hypo...and

when the stimulating is dominating, you are hyper.

Hashi's antibodies are about inflammation...different animals than

TSH receptor antibodies.

About 1/3 of the folks with Hashi's have TSH receptor antibodies.

What Elaine is saying..and what would be important to a Hashi's

person with TSH receptor antibodies - is that excess iodine can

stimulate TSI antibodies.

This is Possibly why some hashi's folks have gone hyper with iodine

supplementation. They may have TSH receptor antibodies - and the

iodine has stimulated those TSI antibodies that were just laying

there quietly.

cindi

>

> Hi ,

>

>

>

> Thank you for the website on Graves. After reading the information

on that

> site, I can say no I do not have this.

>

> I am hypothyroid and do not have most of Graves symptoms. Thanks

though, I

> want to check out all possibilities.

>

>

>

> Joni

>