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In a message dated 6/13/99 9:30:27 AM Eastern Daylight Time, biomcs@...

writes:

<< I have been reading this group since its inception. My main interest is

to see if taking these supplements does improve the health of a thyroid

patient. I would be interested in seeing how many people are improving with

supplements alone, supplements with traditional medicine etc. As for the

group problems, , you are in part to blame. I have waded through

unbelievably long posts about your vacations, your partner, etc. Possibly we

thought it was okay to post about our personal lives as you did. I would

also be interested to see if the people on the board are getting their blood

checked to see what their TSH numbers are. >>

hi ,

Currently, every 4-6 weeks I am having TSH checked. Each time, 4 now, the

Dr. has upped the sythroid dosage. The next test is at the end of this month.

Seagale

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If you are taking Synthroid, you must now be hypothyroid.Are you taking the

supplements along with your Synthroid?

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:

I have been reading several of your posts lately and it seems to me that all

you want to contribute to this group is dissension and a continuous

motivation to stir the pot and upset people within this group. What is your

point and why do you keep on badgering with your troublemaking?

has shared only once of his situation with work and the troubles that

are going on there. I have known him for almost nine months and throughout

that period, he has shared excerpts of things here and there, but most of the

time, has a mission to reach out help others with thyroid disorders by

means of supplementation. He does NOT profess that everything will work for

everyone, but introduces a variety of options through his own use and

research.

Why are you on such a tangent to upset this group? ly, I don't know what

the rest of you think, but I would like to see leave if all she has

to contribute to this group is division and strife, or find somewhere else to

discharge your negativity. I am sick of your cannon ball blasts against

and others.

Sincerely,

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In a message dated 6/13/99 12:28:25 PM Central Daylight Time,

wick@... writes:

> ly, I don't know what

> the rest of you think, but I would like to see leave

has committed to keeping posts on-topic and screening out offenders. I

am sure he will do this given everyone's intense desire to find healing

strategies that work and to share that knowledge. While you may object to

's " attitude " , she has asked some relevant questions (e.g. who's

still taking meds, TSH numbers, etc.) The easiest solution, , is to

simply hit the delete key when you see a post (or poster) you don't care to

listen to. I don't think we need pubic shunning.

Now for my questions: 1.Regarding the timing of supplements: , at one

time I recall you saying that you sat down at breakfast with your boatload of

supplements and shoveled them down! I was discussing vitamins with some

friends of mine last night and there was some confusion about what should be

taken with/without food, should E not be taken with C, and so forth. , I

am NOT asking you to add this to your things to research; you have enough

going on right now. But is there a good resource to look this kind of info

up? 2. My major complaint right now is that I do well during the day, but

absolutely " run out of gas " by dinner time. Would there be some way to take

the recommended supplements in such a fashion that would help this? Ideas

anyone? (BTW, I am subclinical hypo). Thanks, Lydia

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...I am very interested in 's theories, but I find that the

Tapazol works best for me at this time. From time to time I take the copper,

but found that some of the other supplements increased my symptoms.

(calcium/magnesium and selenium). My TSH is normal but I'm sure it's because

of the Tapazol.

Every body is unique and perhaps there are different reasons why people

develop thyroid problems, as well as different " cures " .

(supplements/yoga/lifestyle changes)

I am hoping that several of the people on this board will find their symptoms

disappearing using just the supplements..that has been 's experience. I

think several others on the board are taking the supplements as well as PTU

or Tapazol.

In my opinion, RAI (radiating the thyroid) is barbaric! And yet most endos

recommend this procedure.

I personally believe that to fully heal ourselves, we must reflect on our

physical, psychological and spiritual lives. I don't believe that disease

or healing is generated by only one of these areas. Some of us live very

stressful lives and we pay a huge price in terms of our health. There is

lots to learn about ourselves for this illness. I suggest we follow 's

example and learn all we can about how our bodies work and how food,

exercise, and lifestyle affect our health.

Esther

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Dear Esther,

I totally agree w/what you said--that we are all unique, probably have many

different reasons for our disease, and each have our own path to healing.

When I got sick, I researched everything I could get my hands on, tried to

figure out what I had been doing or taking right before I got sick and

attempted to orchestrate my own cure while using allopathic medicine as a

back-up. I am sure I was not too popular w/my endo, but the Atenol and

Tapezol surely helped me while I was getting better. I also listened to my

own body--I am very in-tune w/it anyway, and always can tell when something

is " off, " if I'm getting better or worse, etc. As I said before on this

board, when I felt my metabolism slowing down and told my endo to decrease my

Tapezol dose, he didn't believe me. At my insistence he did bloodwork, which

confirmed that, on the Tapezol, my thyroid levels were now becoming low

(e.g., I had to decrease the Tapezol to bring them up to normal). We all

have to tune in to ourselves and really listen to what our body is telling

us--and trust that above what the drs. say. Our bodies will guide us as to

what supplements to take, what to eat, etc.--a process that we all have

witnessed w/ and others on this board. For each individual this process

is unique, and must proceed by trial-and-error; there is no " magic " formula.

With some patience, however, I believe everyone can improve, and perhaps even

heal.

AntJoan

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  • 1 year later...
Guest guest

Don,

I'm so glad to hear that you have fared well with surgery and are feeling an improvement. It is very true about being patient. I've been the thoracic route twice and one thing that definitely sticks out in my memory is taking it easy. If you don't mind me adding a few cents, the surgeon I had the first time (1984) told me to try eating sherbet. He was particular about not using ice cream because of the daily base. I don't remember why dairy was an issue but I basically did as instructed. You don't have to shoot me to take sherbet so it was actually a relief to be able to eat something that tasted really good. One point, and this may be specific to me especially after reading so many of others accounts, is unlike many I don't tolerate warm/room temperature things very well. For instance if I have a spasm, many on this list recommend warm liquid. For me that actually intensifies the problem. I have a several half frozen water bottles in the freezer at all times in addition to a stash of popsicles. With a spasm I swallow chucks of the popsicles and yes it only goes as far as the stricture but the cold does two things...1 - Seems to numb that area (usually) so the pain is more tolerable and 2 - The cold seems to dissipate the spasm sooner, rather than later. Anyway, glad to hear you're over the biggest hump and working toward recovery.

.

PS: Thanks for responding on the chat issue. In some instances I find chat very satisfying and was just hoping to find a group who also did so. Not a problem. This list alone has provided me with so much already.

This group

,Thanks for writing. I, too, have worked in the computer field for many years and until my sister-in-law found and directed me to this support group many months ago, I wasn't aware of it. It's been a terrific source of information and support. I don't chat with this group, but have found the email through the group (achalasis@...) to be really great. Usually, you see a response within a few hours. Don

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  • 8 months later...

Hi Elma,

I'm so sorry about your Dad. I'll be thinking of you and your family and

sending positive thoughts your way. I hope all goes very well with your

appointment today too.

Thanks for volunteering to run this PNWB group. Let me know if I can help in

any way.

Best Wishes,

Barb F.

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  • 3 years later...

hi claudia hope u r well i just wanted to say tht ppl from round the world are here.. like me from kuwait .. i am glad to hear u r btr .. God bless u and heal u on my expense.. amen Dutcher <@...> wrote: I can't tell you how happy I am to have found you all. I really thinkthat the fact that we are "together", from all across the country, isa minor miracle. We all have a common thread, yet each story isdifferent, and even in down times what you type really does helpsomeone else. I'd just like to add my welcome to the new members andthank all of you who share your ups and downs. You encourge me andI'm grateful for you. There are a lot of good thoughts and heartfeltprayers here. Thnaks!An update on me,

FYI. The cortisone shot seems to have helped my leg.I am not pain free, but I think it's kicked the levels back about ayear or so. It does take a while after the shot to see if there is adifference and I am happy to report it's better. The cyst still makesmy leg go numb, but the sciatica bites a lot less often. That's aminor miracle too.

- Helps protect you from nasty viruses.

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  • 2 months later...
Guest guest

Welcome, . I hope you are finding the information and support

you need from this and other groups. It is wonderful to see so much

more help available now for people with flatback syndrome. At the

time I started this group six years ago, there was almost no

information available on the Web for people with problems related to

their Harrington rods. A few of us had formed an informal flatback

task force. We were trying to figure out what to do to help

ourselves and others. (Most of us had not yet been " revised " and

knew few others who had undergone revision surgery. A few of us had

SUPPOSEDLY had such surgery, emerging from the experience with

little more than horror stories. Where were the qualified surgeons?

At that time, we were only just beginning to find out. What was it

like to have such surgery, and what should someone know in advance?

We were yet to find out -- by having the surgery and sharing what we

had learned.) It was at the urging of this small group -- seven or

eight women with complex spinal deformities -- that I started this

group in 2000. Before I knew it, we had grown to 300, then 400, then

500 members -- and we seem to keep on growing.

You might be surprised at how much effort and time it can take to

manage and maintain a large online forum and website. During one

period in this group's history, I was handling the whole thing solo.

Now I am very blessed to have a fine co-moderator, Loriann -- who

also manages and maintains our group's calendar. Anyone else who

wants to volunteer will be welcomed with open arms. (To mention just

one unmet goal, I would be thrilled to get some help in reorganizing

and updating the resources available in the " Files " and " Links "

sections of the website.)

This group was initially with egroups, which was later subsumed by

groups. As you correctly note, the ads -- over which we have no

control -- enable to make this space available to anyone who

wants to start a group. But the ad revenue goes to -- not

to the people running the individual groups. For instance, you could

start your own group on any subject of your choosing and operate it

as a group. You would have access to 's servers and would

not have to pay for Web hosting. But you would be confined to the

format, complete with ads popping up in members' posts. And

you would receive none of the ad revenue yourself -- all of your own

time and effort in the service of your group would be uncompensated.

In the case of a small, relatively inactive group, this is no big

deal -- you might gladly volunteer the small amount of time

involved. As a group grows larger, archives a variety of resources

at its website, and develops the usual number of administrative and

member-related issues, the time and effort involved can become

overwhelming.

Recently I was amused to see a ad that was clearly targeted to

the people who do the work at these groups, i.e., group owners and

moderators. It was an ad from cafepress, suggesting that we could

raise money by selling group T-shirts. Believe me, I have considered

that option!

Best,

>

> I joined this group and the other flatback revision group early

last

> month. I admit I am pretty much just a lurker at this point. I was

> fused from T5 to L5 back in '77, and have been tilted forward

since the

> day they got me on my feet. I have learned alot from these sites

and am

> very thankful they are here for us to learn from and to meet

others

> going through many of the same things.

> My question, I saw that there was a request for monies to keep

this

> site going. Why? I looked through all the groups help site and

found

> this:

>

> How much does it cost to use ?

> is free to both members and moderators. Our service

is

> advertiser-supported and is partially sponsored by advertisements

> inserted into the email messages you receive.

>

> Were the adds taken off this site so its no longer free? I like

> because it is right in my price range...$0000.00!

> Just curious,

>

>

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this group is made up from people all over the world,with all different religions,colors etc. it amazes me the love and understanding of all here,that it takes a virus to do it.and ta beat it all its run by a group of woman lmao. joke!! our governments could learn a lot here. well blessings to all and I'm sure glad god woke me up today,cause he didn't have to.

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Messenger with Voice.

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  • 9 months later...

I

KNOW I couldn’t have made it without this group. I was so scared when I

was diagnosed in ’03 and these folks wrapped their hearts around me and

loved me through it all. That’s why I’m still here and trying to

do the same for others. That’s what we’re all about.

De

Re:

New Discussion Topic: Treatment - Yes -

No and Why

Hi group

here I am four weeks into tx its not been easy started paxil last week

it should help my head,

But I felt I had to try tx I was given a better than 50% chance so pray for me

as I pray for you guys

By the way dont know if I would have made it if not for this group

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You forgot to say that it is imposible not to love you.You accomplished a lot girl under your own steam.Look what you have accomplished.

Gail

RE: this group

I KNOW I couldn’t have made it without this group. I was so scared when I was diagnosed in ’03 and these folks wrapped their hearts around me and loved me through it all. That’s why I’m still here and trying to do the same for others. That’s what we’re all about.

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of GoolsbySent: Sunday, February 04, 2007 11:03 AMHepatitis CSupportGroupForDummies Subject: Re: New Discussion Topic: Treatment - Yes - No and Why

Hi group here I am four weeks into tx its not been easy started paxil last week it should help my head, But I felt I had to try tx I was given a better than 50% chance so pray for me as I pray for you guys By the way dont know if I would have made it if not for this group

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Thanks,

Gail. I know I’ve accomplished a lot, but y’all

kicked me in the ass when I wanted to give up and didn’t let me!

De

Re:

this

group

You forgot to say that it is

imposible not to love you.You accomplished a lot girl under your own steam.Look

what you have accomplished.

Gail

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hey group I pray all well or at least getting wellerI need to ask something ,Is it normal at night to go to pass water about every hour thanks for the answers that I know are forth coming Motley <dmotley@...> wrote: Thanks, Gail. I know I’ve accomplished a lot, but y’all kicked me in the ass when I

wanted to give up and didn’t let me! De Re: this group You forgot to say that it is imposible not to love you.You accomplished a lot girl under your own steam.Look what you have accomplished. Gail

Everyone is raving about the all-new beta.

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Hi ,

Are you taking any water pills for fluid or have any swelling?

This is also a sign of high blood sugar. Does anyone in your family have diabetes?

Do you drink and coffee or tea late at night?

I would tell your Doc next time, make a note so you don't forget.

I have to write everything down or I will forget.

RE: this group

hey group I pray all well or at least getting wellerI need to ask something ,Is it normal at night to go to pass water about every hour thanks for the answers that I know are forth coming Motley <dmotleybellsouth (DOT) net> wrote:

Thanks, Gail. I know I’ve accomplished a lot, but y’all kicked me in the ass when I wanted to give up and didn’t let me!

De

-----Original Message-----From: Hepatitis CSupportGroupFor 5:29 PMHepatitis CSupportGroupForDummies Subject: Re: this group

You forgot to say that it is imposible not to love you.You accomplished a lot girl under your own steam.Look what you have accomplished.

Gail

Everyone is raving about the all-new beta.

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.17.29/673 - Release Date: 2/6/2007 5:52 PM

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You aren't a quitter girl.Sometimes you just get overwhelmed until you sort it all out.

Gail

RE: this group

hey group I pray all well or at least getting wellerI need to ask something ,Is it normal at night to go to pass water about every hour thanks for the answers that I know are forth coming Motley <dmotley@...> wrote:

Thanks, Gail. I know I’ve accomplished a lot, but y’all kicked me in the ass when I wanted to give up and didn’t let me!

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of gailSent: Tuesday, February 06, 2007 5:29 PMHepatitis CSupportGroupForDummies Subject: Re: this group

You forgot to say that it is imposible not to love you.You accomplished a lot girl under your own steam.Look what you have accomplished.

Gail

Everyone is raving about the all-new beta.

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, I found it always depends on my fluid retention level, I don't get up tp pee alot if I'm not swollen up like the Michelin Tire Dude.... but, if for WHATEVER reason, I do start retaining fluid, my pills kick in and not only do I go often, but for duration, too.... Almost scary for so long, like it won't stop..and you don't have to push at all. It's one of things that make me have just a bit of a smile, from being more comfortable, and also happy that I know the swelling is going to go away. Believe it not, the more water you drink is mo' bettah' good. If you don't drink enough, your body wants to keep it, kinda' like go into ration mode, and thats why your peeing more but enjoying it less. Ask your doc about diuretics, and if they may be right for you. Remember.. ALWAYS follow your doctor's advise. Some side effects may be but not limited to, nausea,athletes foot, dryness of skin and mouth, hairloss, heartattacks, siezures, clucking like a chicken in public places, desire to drink from toilet bowls, (like FIDO), mental illness, bulemia, making funny noises in church, kidney failure, loss of direction, dizziness, unexplainable VD, and mild death. oh.....maybe just a little shortness of breath, too. Other than that...your gonna' be fine!!!! <kcpapa2@...> wrote: Hi , Are you taking any water pills for fluid or have any swelling? This is also a sign of high blood sugar. Does anyone in your family have diabetes? Do you drink and coffee or tea late at night? I would tell your Doc next time, make a note so you don't forget. I have to write everything down or I will forget. RE: this group hey group I pray all well or at least getting wellerI need to ask something ,Is it normal at night to go to pass water about every hour

thanks for the answers that I know are forth coming Motley <dmotleybellsouth (DOT) net> wrote: Thanks, Gail. I know I’ve accomplished a lot, but y’all kicked me in the ass when I wanted to give up and didn’t let me! De -----Original Message-----From: Hepatitis CSupportGroupFor 5:29 PMHepatitis CSupportGroupForDummies Subject: Re: this group You forgot to say that it is imposible not to love you.You accomplished a lot girl under your own steam.Look what you have accomplished. Gail Everyone is raving about the all-new beta. No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.17.29/673 - Release Date: 2/6/2007 5:52 PM

Get your own web address. Have a HUGE year through Small Business.

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Ask your doctor to put you onsimvastatin 20mg if you are going to much.My husband was always in the bathroom so the doc put him on these meds and once he takes them for a year then he is normal for two years without them.He is on them again to get back to normal again after three years of being off them.Perhaps you are drinking to much and too close to bedtime.

Gail

RE: this group

hey group I pray all well or at least getting wellerI need to ask something ,Is it normal at night to go to pass water about every hour thanks for the answers that I know are forth coming Motley <dmotley@...> wrote:

Thanks, Gail. I know I’ve accomplished a lot, but y’all kicked me in the ass when I wanted to give up and didn’t let me!

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of gailSent: Tuesday, February 06, 2007 5:29 PMHepatitis CSupportGroupForDummies Subject: Re: this group

You forgot to say that it is imposible not to love you.You accomplished a lot girl under your own steam.Look what you have accomplished.

Gail

Everyone is raving about the all-new beta.

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You are strong and stubborn so you would have come around without us.You just needed time to sort it all out.Take care hon.

Gail

RE: this group

Thanks, Gail. I know I’ve accomplished a lot, but y’all kicked me in the ass when I wanted to give up and didn’t let me!

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of gailSent: Tuesday, February 06, 2007 5:29 PMHepatitis CSupportGroupForDummies Subject: Re: this group

You forgot to say that it is imposible not to love you.You accomplished a lot girl under your own steam.Look what you have accomplished.

Gail

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Hi Tony

If your drinking your gallon of water daily ...yes..

RE: this group

hey group I pray all well or at least getting wellerI need to ask something ,Is it normal at night to go to pass water about every hour thanks for the answers that I know are forth coming Motley <dmotley@...> wrote:

Thanks, Gail. I know I’ve accomplished a lot, but y’all kicked me in the ass when I wanted to give up and didn’t let me!

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of gailSent: Tuesday, February 06, 2007 5:29 PMHepatitis CSupportGroupForDummies Subject: Re: this group

You forgot to say that it is imposible not to love you.You accomplished a lot girl under your own steam.Look what you have accomplished.

Gail

Everyone is raving about the all-new beta.

I am using the free version of SPAMfighter for private users.It has removed 1749 spam emails to date.Paying users do not have this message in their emails.Try SPAMfighter for free now!

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Hi ,

For me I drink all of my required water during the

day. I stop drinking about 7:30 at inght so that I

only get up once during the night. If you are not

drinking alot of liquids at night then you will

probably want to ask a doctor.

Hugs from Southern California,

Jerri

--- Goolsby <anthonyegoolsby@...> wrote:

> hey group I pray all well or at least getting weller

> I need to ask something ,Is it normal at night to go

> to pass water about every hour

>

>

> thanks

> for the answers that I know are forth coming

>

>

>

>

> Motley <dmotley@...> wrote:

>

> Thanks, Gail. I know I’ve accomplished a lot,

> but y’all kicked me in the ass when I wanted to give

> up and didn’t let me!

>

> De

>

> Re:

> this group

>

> You forgot to say that it is imposible not

> to love you.You accomplished a lot girl under your

> own steam.Look what you have accomplished.

>

> Gail

>

>

>

>

>

>

>

>

>

>

>

>

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

> Everyone is raving about the all-new

beta.

________________________________________________________________________________\

____

Any questions? Get answers on any topic at www.Answers.. Try it now.

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  • 8 months later...

Hi Amy,

Don't worry, this topic comes up periodically and people who've chosen RAI

are well represented. While I agree that there's an anti-RAI slant in this

group, to me it provides balance to the pro-RAI propaganda hyperT people

hear whenever they walk into a doctor's office, at least in the U.S.

What it comes down to is that different treatments work differently for

different people, hyperT is a complex disease and there is no one size fits

all approach. I am very glad that people who have chosen different routes

feel free to share their experiences in this group so that I have as much

information as possible to make decisions that are best for me. If this

information sharing gets labeled " medical advice, " so be it.

Nissa

On Thu, 18 Oct 2007 21:41:16 -0000, " Amy " <AIMEECAKES@...> wrote:

> Many in this group are obviously very anti RAI.

> I almost died before I had RAI and I am not obese now from having it.

> AntJoan, be careful what medical advice you give.

> It amazes me what all I read here.

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In a message dated 10/18/2007 5:41:24 P.M. Eastern Daylight Time,

AIMEECAKES@... writes:

Many in this group are obviously very anti RAI.

I almost died before I had RAI and I am not obese now from having it.

AntJoan, be careful what medical advice you give.

It amazes me what all I read here.

This group was founded as a forum for exploring natural ways to treat

thyroid disease, in conjunction with medication under a doctor's supervision.

In that spirit, we all share our experiences, and the conclusions we have

drawn from them. In no way do I, or anyone else, give medical advice, or claim

to be doctors.

I joined this group after I was cured, purely in the spirit of sharing my

experiences and helping others to explore options available to them.

Why am I the one who's always getting attacked, when I joined this group

purely to help others? It's like they say, " no good deed goes unpunished. "

AntJoan

************************************** See what's new at http://www.aol.com

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Amy,

In July my PCP told me I had Graves' and via a Twilight Zone event, I got to

see an endoc in less than a month rather than in 6 to 9 it normally would take.

His nurse spend 1.5 hours examining me. Then he came into the exam room and the

first thing he did was introduce himself. The second thing he did was tell me

that the recommended course of action for Graves' was RAI with followup

medication indefinitely. Now, if it weren't for this and similar groups, I would

not have known that the SOP in the USA for Graves' and hyperthyroidism is RAI

though there are a number of other treatments which unlike RAI can be

reversed/stopped. Since I had been reading the exchanges here and elsewhere, I

knew what he was REALLY saying was, " I want to destroy your thyroid which means

you'll be hypo for the rest of your life and taking drugs for that for as long

as you live. " I also knew that there were a number of treatments that could be

tried first that could leave me NOT dependent upon

meds. So, I introduced myself and told the endoc that RAI was the LAST

treatment we would try. He tried to convince me that treating hypothyroidism is

much easier than hyperthyroidism but the number of people, mostly women, that

suffer with hypo on these forums is so numerous that I didn't think it was that

easy to get the dosage or the meds correct.

So, while RAI is an option, since it is non revers able and the consequences

so grave (pun intended), most posts here want our first time visitors to have no

confusion with regard to the logic to try anything/everything else before RAI is

administered.

Is that fair since if their only other source of info is an endoc and their

SOP? Even the web pages I've visited before joining this and other thyroid

forums are very clinical and cold/impassioned. They make RAI seem to be as

routine as getting a band-aid and that the sequence of treatment is optional or

of no consequence, which it is not.

--Bruce

Amy <AIMEECAKES@...> wrote:

Many in this group are obviously very anti RAI.

I almost died before I had RAI and I am not obese now from having it.

AntJoan, be careful what medical advice you give.

It amazes me what all I read here.

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