question

[Guest guest]

<He has been on the diet now for just about 4 weeks and I have noticed he

has become very aggressive.>

Kathy,

This may be a little withdrawal or toxicity coming out in your child.

I would advise keeping a detailed journal of daily events and a food diary

as well. You may be able to correlate these aggressive times with a certain

food; corn, soy, eggs, etc. You may need to then eliminate that food as

well.

Epsom salt baths can be relaxing as well as detoxifying. We use two

cups of Epsom salt for a full tub. Make the water as hot as the child will

stand and keep the child in it for 30 minutes.

Pat in Ohio

[Guest guest]

> He has been on the diet now for just about 4 weeks and I have

> noticed he

> has become very aggressive. Has anyone noticed this with their

> children

> and is there something that I should be doing different?

Yes, ours has been more so as well. Whacking me and the others a lot,

and pinching a lot more than ever. But the language and eye contact is

improved after only two weeks, so I'm hopeful and just hang in there with

the rest. had a taurine definciency, and my doc said that would

help him (supplementing, that is) a bit with the agressiveness. It

seems to calm him soon after I give it, 2 capsules, so I do it when I

think I'm approaching a tough time of day for him.

Good luck.

Beth R.

[Guest guest]

TJ,

What kind of clothes are you looking for? Casual? Pants? Shirts? Let me now.

Deanna

300lbs bmi 50 day of surgery 02-15-01

200lbs. bmi 32 as I sit here now !!!

THANKS GOD !!!!

Question

> Does anyone have any size 20/22 you want to part with? I will gladly

> pay shipping.Thank a bunch!

> TJ

> LAP DS 2/16/01

> Dr.Dennis

> Pre-op 32/34W

> Now 22

> 319.5/229/150(or less)

>

>

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

>

[Guest guest]

Hi Carole,

Some of the symptoms persist because many of us with GD are more sensitive to

change. In my case the symptoms you describe seem to flare when I'm

hypothryoid. I think it's the being out of balance or just tired and living on

sugar

that makes me irritable. When my levels are on the high side of normal, I

function best.

Overall, her symptoms should improve when her thyroid hormone levels are

optimal for her. You could ask for tests earlier to make sure she's not becoming

hypothyroid. Remember that TSH can stay suppressed so ideally you want to have

her FT4 and FT3 levels tested to make sure those levels aren't too low, even

if they're normal. Take care,elaine

[Guest guest]

Carole,

Anyone starting out on ATD's should be tested every month, FT4 at least,

with FT3 probably every other time--three months between tests is way too

long to be able to control this disease. She's so young, you can't expect

her to understand the relationship between her symptoms and her thyroid

hormone levels--but if she's under or over-medicated, she will be miserable

plain and simple, and her moods and actions will reflect that misery. You

MUST get blood work every month!

Terry

>

> Reply-To: graves_support

> Date: Sat, 5 Jul 2003 12:19:30 +1200

> To: <graves_support >

> Subject: Question

>

> Hi

>

> I have another question to ask. My daughter is 10 diagnosed in Feb of this

> year.

>

> I thought silly I may add when on carbimazole it would control her symptoms

> that she had before we found out about Graves.

> Lately her moods are all over the show when I asked about her moods I had been

> told that it was probably just her.

> Because I was under the understanding when you went on the medication the

> symptoms you have with Grave would be under control once they had the right

> dose.

> But lately her moods are all over the show she isn't due for another blood

> test until August but I don't mind going in earlier if I have to but her moods

> go from being happy as to as my sons name for her these days is the Tasmania

> Devil full on talking, angry as. You can't have a discussion with her if it is

> something she doesn't want to talk about she just won't listen yells and walks

> away. We are getting good at just letting her go and when she cools down she

> will then come back and talk about it.

> My question I suppose is do alot of the symptoms stay even though you are on

> the tablets. Or does it just mean the dose is still not right.

>

> Thanks for any help

>

> Regards Carole

>

>

>

[Guest guest]

Hi Elaine

Thank you for that. I hope to go to the GP in a day or two so will talk to her

about this.

I am amazed you thought Hypo that didn't cross my mind because she has only gone

Hypo once and she couldn't get out of bed I just thought if she went Hypo that

is what she would do again. I thought maybe Hyper.

She craves sugar and salt asks for sweet things all the time is that quite

common with people with Graves?

Take Care

Carole

Re: Question

Hi Carole,

Some of the symptoms persist because many of us with GD are more sensitive to

change. In my case the symptoms you describe seem to flare when I'm

hypothryoid. I think it's the being out of balance or just tired and living on

sugar

that makes me irritable. When my levels are on the high side of normal, I

function best.

Overall, her symptoms should improve when her thyroid hormone levels are

optimal for her. You could ask for tests earlier to make sure she's not

becoming

hypothyroid. Remember that TSH can stay suppressed so ideally you want to have

her FT4 and FT3 levels tested to make sure those levels aren't too low, even

if they're normal. Take care,elaine

[Guest guest]

Hi

She is booked in for the 21st of this month. It is the holidays here and she

said she will not go in the holidays I am not arguing with that one.

Her moods swing very quickly from being happy to angry.

She has always craved sweet things but even more lately

Bye Carole

Question--sugar and salt cravings

Hi Carole,

Being hypo can certainly make a person moody, as you described before. Are you

getting bloodwork done soon? Generally, people seem to crave sugar when hyper

and salt when hypo.

Best wishes,

B.

[Guest guest]

In a message dated 7/9/2003 3:06:10 PM Central Daylight Time,

Toolman.@... writes:

> Hi

> She is booked in for the 21st of this month. It is the holidays here and she

> said she will not go in the holidays I am not arguing with that one.

> Her moods swing very quickly from being happy to angry.

> She has always craved sweet things but even more lately

> Bye Carole

Carole,

Has your daughter gained any weight now that she's on her medication? Did

she lose weight in the beginning?

Amy did crave sugar badly. In fact, we learned only a short time ago that

some two years before she was diagnosed she was sneaking into the kitchen at

night and eating just plain sugar from the cupboard!

We have to watch what Amy eats now. She went from losing 18 pounds in less

than month to gaining all that back plus more when she went hypO from the

medication. She's now able to exercise (something she was too weak to do for a

while) and we have cut way back on sweet things.

Pam

[Guest guest]

Hi Pam,

No she hasn't put on weight. She has always been very slim.

It amazes me what she eats and the size she is but she drives me crazy asking

for lollies and ice cream. Morning Noon and Night.

Bye Carole

Carole,

Has your daughter gained any weight now that she's on her medication? Did

she lose weight in the beginning?

Amy did crave sugar badly. In fact, we learned only a short time ago that

some two years before she was diagnosed she was sneaking into the kitchen at

night and eating just plain sugar from the cupboard!

We have to watch what Amy eats now. She went from losing 18 pounds in less

than month to gaining all that back plus more when she went hypO from the

medication. She's now able to exercise (something she was too weak to do for

a

while) and we have cut way back on sweet things.

Pam

[Guest guest]

In a message dated 10/1/2003 11:02:35 PM Central Daylight Time,

sweetandsassy_intx@... writes:

> I have a question to those of you who have had the RAI treatment. I

> am wondering how it is working for you. Also, those of you who are

> Pro RAI, i would love to hear from you. I have heard lots of people

> who are against it, and i am sure there are some who are for it, i

> would like to hear your opinions.

>

I had RAI in 1979 with little to no side effects. Back then they didn't even

make me use different bathroom facilities for two weeks like I understand they

do now. I have been stable since then, UNTIL a year ago. In fact, I wasn't

even told Graves wasn't curable, that I was just in remission. I have learned

a lot in the last year, but I can't honestly say I would have done things

differently There are problems with all three treatments (ATDs, RAI and removal

of the thyroid). But given how little information I had and how little people

seemed to know, I had no choice at the time. Being in remission for over 20

years is not a bad thing:-)

However, I do wonder what my life would be like now if I had done things

differently, or even had the option. Now, not only am I out of remission, but I

have serious TED and it appears I also have other autoimmune problems which may

or may not be related to coming out of remission with Graves involving my

whole musculatur system. There are days I can barely walk across the room

without pain.

Graves? Or something else. Still working on that one.

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Underwent

Orbital radiation June-July 2003. No change yet.

[Guest guest]

Sassy,

If you want to hear from the pro RAI folks, you might just have to visit

another group. While there are quite a few people here who've had it, for

the most part they are not the ones happy with the outcome. If you've read

the Top 20 reasons not to have RAI list on the home page, which is quite

well documented, and spent a bit of time with the eye disease pictures, you

will begin to understand why. Most of us who have NOT had RAI are happy we

didn't go that route. The 30% risk of bad results is jut too large, and I,

for one, can say that life on ATD's ain't that bad at all--in fact, mine,

for one, is pretty much " normal " .

I never have been able to understand why anyone would want to eat a piece of

nuclear waste!

Terry

>

> Reply-To: graves_support

> Date: Thu, 02 Oct 2003 04:01:33 -0000

> To: graves_support

> Subject: Question

>

> I have a question to those of you who have had the RAI treatment. I

> am wondering how it is working for you. Also, those of you who are

> Pro RAI, i would love to hear from you. I have heard lots of people

> who are against it, and i am sure there are some who are for it, i

> would like to hear your opinions.

>

> Thanks,

> Sassy

>

>

>

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

> 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 Sassy,

This question has me worried for you.

Have you not been treated for your hyper yet ? That must feel awful.

They should have you on meds by now. You poor thing.

You do get to choose what the treatment will be, BUT ... to do anything

permanent, while you are still hyper is a very bad thing. Hyper makes it

very difficult to think clearly. We all understand this because we were all

once too hyper also. That is why they all suggested using the drugs first.

That way you have a chance to find out all you need to know about the immune

system and our hormones. This IS what you MUST learn, to be in charge of

your own body.

Please, please never base such an important choice like killing the master

gland of your body, on anyone else's OPINION.

Lots and lots of people have opinions. That does not mean they are correct.

Once you have FACTS, then you will be able to judge opinions. But not until

then. And this can NOT be learned in only a few weeks.

The anti thyroid drugs do work. And if you change your mind later, you can

then have surgery or RAI. But those choices are one time only. No going back

Do you have copies of your lab results yet ?

We want to help you, but like they all said earlier, we need facts to be

able to help you.

There is unfortunately no person or doctor anywhere than can fix any of this

FOR you.

You now have an autoimmune disease for life.

What you do now WILL affect your entire future..... right up until the day

you die.

And if you do the RAI and are near your children the first few weeks, it

will affect THEM for life.

You had better take all of this very seriously, and do NOT trust anyones

OPINION. Lets face it, half the people in the world are on the bottom half

of the intelligence scale. You have no way of knowing which half .

Here is a accurate site that should help you.

http://www.suite101.com/article.cfm/graves_disease/67961

and also

http://www.suite101.com/article.cfm/graves_disease/84431

Sassy... Please feel free to ask any specific questions, or tell us what

your concerns are. Between the group of us, some one will undoubtedly have

the answer. Or we at least know how to look it up.

-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]

***Being in remission for over 20

years is not a bad thing:-)***

Unfortunately that is NOT remission.

Remission is when we have no antibodies that cause Graves' AND a thyroid

gland that works.

RAI increases the bad antibodies. This is what puts the RAI patient at risk

in the years to follow.

RAI kills the thyroid gland. It causes Hypothyroid, which is a different

disease. The RAI patient now has both Graves' AND Hypothyroidism.

ATDS control the thyroid hormones while they also destroy the antibodies.

Since I did take the drugs, and now have not needed them for so long, this

is remission.

BUT, I now know MY genes are set up in such a way, that if I make enough bad

choices in environment and stress in the future, Graves' could return. I now

know my own weak point. It is my thyroid.

-Pam L- who firmly believes WORDS do matter.

[Guest guest]

In a message dated 10/2/2003 2:21:23 AM Central Daylight Time,

pladd@... writes:

> Unfortunately that is NOT remission. Remission is when we have no

> antibodies that cause Graves' AND a thyroid gland that works.>>

That's certainly a different take on things. I first heard the word

remission on this list and since I did have a thyroid that worked to some extent

(RAI

apparently didn't kill off all the gland, just part of it, I was still

producing some thyroid on my own) and during those intermittent years, all my

blood

tests tested negative for antibodies, or at least so low they didn't show up.

> <<Since I did take the drugs, and now have not needed them for so long,

> this

> is remission.>>

But there are many who still have trouble even while on the drugs, aren't

there?

> -Pam L- who firmly believes WORDS do matter.??

And how one uses them.

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Underwent

Orbital radiation June-July 2003. No change yet.

[Guest guest]

Terry wrote:

> Sassy,

> If you want to hear from the pro RAI folks, you might just have to visit

> another group. While there are quite a few people here who've had it, for

> the most part they are not the ones happy with the outcome.

Just as an FYI, I think the American Graves Disease Associate maintains a

bulletin board. They are very pro-RAI. In fact, they are so pro-RAI that

they remove any postings that express any reservations about it - and don't

tell the board participants that they are doing so. The poor souls who go

there to learn think they are on an open forum and that everyone there

thinks RAI is just GREAT. :-( (I know; I once posted a " stop, think,

research " post to someone who'd just gotten there and had a doctor pushing

RAI and my post just ... disappeared; I later heard that this is SOP over

there.)

Otherwise, I just want to say: some people have been very happy with the

results of RAI, and you will find such people if you look around. However,

others (as predominate here) have been deeply unhappy. Many people have

expressed profound regret for having " tried " RAI as a first treatment

option, to the point of saying that they " regretted it every day since

then " . However, I've yet to hear any such profound sadness/regret about

trying ATD's even once, not even from the small minority of people for whom

they ultimately didn't work out.

This push for RAI goes utterly against the usual conservatism that governs

medical treatment - the ethic that the less invasive, lower-risk treatment

option should be tried first. (Especially when it produces results as good

as *or better than* the more invasive option for most people.)

-Jill

[Guest guest]

Hi

I don't post often, but read them everyday. I was dx in Jan 1997, had RAI

in February 1997. My levels bottomed out in May--felt awful, headaches,

fatigue, weight gain, etc. Started on synthroid, spent over two years

trying to find the right dose for me, because of the bloodwork needing to be

done in 6week intervals. Just as I'm starting to think that I'm finally on

the right track, I get pregnant and there go the thyroid levels. I spent

most of my pregnancy (2nd child) changing my medication dosage every six

weeks because of all the changes your body goes through with pregnancy.

Then, after she was born, I had to go through the changes all over again.

It took two more years for everything to settle down--my daughter is 3 1/2

years old (my older daughter is 7) and I've finally been on the same dose of

levoxyl (generic) for about 15 months now. If I had it to do over again, I

would either skip the RAI and try the anti-thyroid drugs first, or skip

pregnancy after RAI. Pregnancy can be crazy enough on it's own, without the

added problems of thyroid hormones. Plus, I always wonder, what if they

come up with a cure for this? I'm going to be out of luck because my

thyroid is dead now, there is no going back.

I hope this is helpful and if you have any other questions about my personal

experience, feel free to ask. You're doing the best thing you can right now

by asking questions and getting all the information you can.

Take care,

Beverly

Question

> I have a question to those of you who have had the RAI treatment. I

> am wondering how it is working for you. Also, those of you who are

> Pro RAI, i would love to hear from you. I have heard lots of people

> who are against it, and i am sure there are some who are for it, i

> would like to hear your opinions.

>

> Thanks,

> Sassy

>

>

>

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

> 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]

Pam,

thank you for your responce and concern. Here is what i know, and

what i am thinking. Please everyone, don't gang up on me about

things. First of all, my t4 is 13.5 and my TSH is <0.1. I had

another test ran last week and i will go in and pick up my lab work

then. I belive the nurse told me it was still <0.1. monday i will

have the thyroid uptake done. basically they will do an ultrasound

of my thyroid and count something. not sure what, but am interested

in the ultrasound.

Now, here are my thoughts and concerns. It seems to me, that in the

groups there are a lot of people who are against the RAI. however,

in my church there are some people who have had it and think it is

wonderful. Some of them tried natural ways and after a few years did

the RAI because it wasn't working.

From what i understand, Graves disease (my autoimune system) is

attacking my thyroid and not letting it do its job. Well, to me, one

can't exactly get rid of the imune system, so the thyroid is the next

best option. So, if my body is not letting the thyroid do it's job,

then it is not really working currently now anyhow. now, with the

meds, it can lower your white blood count nad effect your bone

marrow. that scares me. with those lowered you have a much higher

chance of getting sick, even a cold can be much worse if you do not

have enough bone marrow. That is my major concern. and, i have

spoken (face to face) with so many people who did the meds and then

ended up doing the RAI anyway. to me, that seems to be a waste of

time, and money, on a chance that they may work. Also, the meds take

a lot of time, as they work slowly (could be both a pro and a con).

Now the RAI worries me about the eye stuff, and that is about it.

but again, the people i spoke with, said once they got on the meds

after the RAI and got to a normal level, the didn't have any eye

problems. basically, they were back to feeling good within 3

months. and going hypo and gaining waight is a concern, as i have

already gained enough weight if you ask me.

and, i don't feel that bad. i am tired. I am not irrational, i can

think just fine. From what many say, it sounds to me as if they are

jumping out of their skin being hyper and all, i am not. Since

getting the diagnosis a week ago, after tuesday (once it sank in) i

am feeling very calm, and better then i have in a long time, as i

feel i have an answer about this.

I have very stong faith as i am a very stong Christian. i have

prayed about this, and do feel i am going to be fine. i just need to

make the decision that is best for me.

So, these are the thoughts that have been going on in my mind the

past few days. I see pros and cons to both. there are side effects

with all of the treatment (but i am not concerding the surgery at

all) so i think i just need to decide which side effect is better for

me.

anyhow, hope this can explain a bit about where i am at.

thanks for listening,

Sassy

> Hi Sassy,

>

> This question has me worried for you.

>

> Have you not been treated for your hyper yet ? That must feel awful.

>

> They should have you on meds by now. You poor thing.

>

> You do get to choose what the treatment will be, BUT ... to do

anything

> permanent, while you are still hyper is a very bad thing. Hyper

makes it

> very difficult to think clearly. We all understand this because we

were all

> once too hyper also. That is why they all suggested using the drugs

first.

>

> That way you have a chance to find out all you need to know about

the immune

> system and our hormones. This IS what you MUST learn, to be in

charge of

> your own body.

>

> Please, please never base such an important choice like killing the

master

> gland of your body, on anyone else's OPINION.

>

> Lots and lots of people have opinions. That does not mean they are

correct.

>

> Once you have FACTS, then you will be able to judge opinions. But

not until

> then. And this can NOT be learned in only a few weeks.

>

> The anti thyroid drugs do work. And if you change your mind later,

you can

> then have surgery or RAI. But those choices are one time only. No

going back

>

>

> Do you have copies of your lab results yet ?

> We want to help you, but like they all said earlier, we need facts

to be

> able to help you.

>

> There is unfortunately no person or doctor anywhere than can fix

any of this

> FOR you.

> You now have an autoimmune disease for life.

> What you do now WILL affect your entire future..... right up until

the day

> you die.

>

> And if you do the RAI and are near your children the first few

weeks, it

> will affect THEM for life.

>

> You had better take all of this very seriously, and do NOT trust

anyones

> OPINION. Lets face it, half the people in the world are on the

bottom half

> of the intelligence scale. You have no way of knowing which half .

>

> Here is a accurate site that should help you.

> http://www.suite101.com/article.cfm/graves_disease/67961

> and also

> http://www.suite101.com/article.cfm/graves_disease/84431

>

> Sassy... Please feel free to ask any specific questions, or tell us

what

> your concerns are. Between the group of us, some one will

undoubtedly have

> the answer. Or we at least know how to look it up.

>

> -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]

Oh Sassy,

I am so pleased to hear you are doing OK.

I have worried about you.

I do hope you do not feel attacked here in our group. We have all been hyper

all at different amounts when diagnosed, so there ARE others here that will

be able to relate to your particular situation.

***Hey... I just checked. We now have 862 members !***

Your doctor sounds like she could possibly not be as horrid as some many of

us have seen. The truth is you never really know for sure until time has

passed. Same as meeting any new person. At least you don't feel pressured.

But do keep in mind IF she prefers one treatment over another , for what

ever personal reasons, she will simply phrase facts in such a way as to make

it seem like YOU are making the choice, not her.

So do continue learning as much as you can. Because IF you choose the RAI,

without enough time ( months) to learn all of the facts, I pray all goes

well for you, and this is the right choice for you. None of our choices are

great, and two are forever, with no way to change your mind if it does not

work out the way you thought.

No matter what you choose, please do say, or at least stay in touch with a

few of us that care what happens to you. I can cerainly understand that IF a

person chooses RAI, hanging out here is not the most healing environment.

But you should find a few gals you click with , in the first few months here

and once you are more stable, might want to get back to real life and

continue being a Mom, wife, and community member.

But , please, even if you do the RAI, stick with us in case you run into

problems that come up. There is always someone around if something happens.

________________________________________________

Now, if I may.... I do want to be sure we are not confused on a couple of

things._____________

The drugs do have very rare side affects of low white blood count or liver

problems. BUT, be sure you understand that risk is at 1%, and you can find

this fact on any medical web site.

This is the reason we MUST have WBC and liver tests done as a base line

reading before the drugs are started. Because Graves' causes these same

problems all by itself... with no drugs.

Then we have these same tests done every 4 weeks for the first two or three

months.

IF we do have such a reaction, we stop the drugs, and our body returns to

what it was before.

_________________________________________________

Next,

You do still need more data.

The TSH number is normal for hyper, so do not be frightened.

IF that is a total T4 , keep in mind total labs are not accurate. They also

are measuring other things in your body, such as estrogen.

The Free T 4 is accurate, and is not expensive at all. It is the cheapest

test we have.

You DO want a clear diagnosis though, and I do not believe you have that yet

Since cost is a factor, I suggest you go physically to the book keeper, and

get all the prices of every thing ahead of time.

The uptake scan is very expensive. I believe an ultra sound is less so.

Get prices for everything you can possibly think of.

_________________________________________________

See the thing is Graves' is not the only reason we can be hyper. And without

the correct diagnosis, any choice is possibly incorrect for your particular

circumstances.

For example... IF you have a nodule making the extra hormone, and not Graves

antibodies, then the RAI can cause Graves' disease, which is not a good

thing at all, as then you have antibodies created that can go on to attack

your eyes . Then your legs are the most common next place they go.

________________________________________________

The fact that this many people that you personally know have had cause to

have RAI is a bit concerning. Do you live where there is an environmental

factor causing this cluster of thyroid problems ? If so, please, please be

positive there is no cancer ! A small cancer nodular in a thyroid, which may

or may not have Graves', should never be RAI'ed first. This causes late

diagnosis of the cancer.

_______________________________________________

Since these people had bad experiences with the drugs, please be sure you

are not being treated by their doctors. As obviously their doctors did not

understand how to use the drugs properly. These same doctors are NOT skilled

a adequately and properly prescribing replacement hormone.

Also, do be aware, it is very, very unusual for anyone to feel fine three

months after RAI. You can not plan on that. I do not want you disappointed

later.

I have not had RAI, but have been a member of many Graves' boards for a very

long time, and have watched everybody come through. So my observations have

been what set my mind to rest that for ME, the drugs were the correct choice

My initial response to the idea of radiation was horror. And I was very

pleased to find the drugs were the cheaper way to go. What a bonus I had

that day. But as time went on, I had time to question that choice. I

wondered if I should find a way to borrow the funds to do the RAI, if that

really was the best thing. THAT was when I started my education.

Sorry if you did not want to hear any of this, but I would not feel right if

I did not take the time to try to help you see some of the other sides to

this whole thing. For some reason, I am compelled to stay on sites like this

and hopefully help a few of the new folks that come along. But since I am

healthy now, I do get distracted with real life, and am not always here to

follow through , thus the group works best, as there is always some one else

to continue on with your next questions.

Please take good care of yourself right now. No extra stuff. You body is

loosing muscle, and any extra movement or lifting can cause painful problems

that will not heal right now. You need to get as much rest and sleep as

possible, and focus on real food. The additives in pre-made foods will cause

you unneeded problems you do not need right now.

-Pam L- who must rush off, and is suddenly aware there were other posts that

I was supposed to reply too. ~sigh ~

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]

Sassy,

Your thyroid IS working!!! Your antibodies are causing your thyroid to

overproduce hormone right now. If you ablate your thyroid, then it will never

work

again, and you will be put on a synthetic thyroid hormone that could never

replicate what your thyroid makes naturally.

There is a 0.2-0.5 % chance of developing agranulocytosis and liver problems

from ATDs, so your fears are unwarranted. I was NEVER sick with a cold or

anything while I was on Tapazole.

The scan you are having is not the same as an ultrasound....it is a small

dose of radioactive iodine (either I 131 or I 123) to your thyroid....and again

I

say it is unnecessary and they are only doing this test to determine how much

your ablative dose should be. Even tho they do this, there is no exact

science as to how much to give you so you will be euthyroid after. The theory

now

is to give larger doses of RAI to totally ablate the thyroid, ensuring

hypothyroidism and avoiding a second dose.

I am a Christian as well. You might want to do some more research and some

more praying on this. By your email, I can tell that there is so much more you

need to learn about this disease and its treatment options. Especially since

you say your only symptom is tiredness and you are planning on ablating a

vital gland? Makes no sense to me.

I am curious....how is it that you know personally so many people with Graves

Disease?

God bless,

[Guest guest]

Hi Sassy,

There are a few misconceptions in your post. I'll try to address the ones

obvious to me--but my first hope is that you become much, much more educated

before you make a *permanent* decision that will affect your quality of life

for the rest of your days.

First of all, my t4 is 13.5 and my TSH is <0.1. I had

> another test ran last week and i will go in and pick up my lab work

> then. I belive the nurse told me it was still <0.1. monday i will

> have the thyroid uptake done. basically they will do an ultrasound

> of my thyroid and count something. not sure what, but am interested

> in the ultrasound.

First of all, the T4 test is misleading. It counts lots more than the

thyroid hormone available to your body. You need a FREE T4, a FREE T3 and a

TSI Antibody test to confirm what's happening with your thyroid.

Second, it sounds more like they will do a thyroid scan and uptake

test--where you swallow a tiny amount of a more benign iodine isotope, and

then they can 'read' what's happening with your thyroid. This is a serious

test--some here have had reactions to just the little bit of radioactive

iodine and it's increased their symptoms of GD. It's preferable to get an

actual ultrasound of your thyroid, without going through this test.

Although, that said, I allowed it--didn't know any better when I was getting

diagnosed, hadn't been smart like you and found this group. I have to say,

it didn't have any noticeable effect on me. The PRIMARY use of the uptake

and scan is to calibrate the dose of RAI to offer you.

>

> Now, here are my thoughts and concerns. It seems to me, that in the

> groups there are a lot of people who are against the RAI. however,

> in my church there are some people who have had it and think it is

> wonderful. Some of them tried natural ways and after a few years did

> the RAI because it wasn't working.

>

You've already read a great comment on this--if the doctor monitoring

someone on ATD's doesn't know what he/she is doing, or weans the patient off

of ATD's too soon, or too rapidly, then they " don't work " . Most of the time,

doctors who have an agenda to promote RAI will do this. Also, ATD's " don't

work " if you don't take the medicine. Compliance, according to my endo, is

the #1 problem with ATD use.

> From what i understand, Graves disease (my autoimune system) is

> attacking my thyroid and not letting it do its job. Well, to me, one

> can't exactly get rid of the imune system, so the thyroid is the next

> best option.

Your logic here is really flawed! It's like saying you have an infected

fingernail, and if you can't cut off your arm to fix it cause it's

impractical, you might just as well cut off the finger and be done with it.

Are you aware, exactly, of the role the thyroid plays in your body? That it

RUNS your metabolism? That if you ablate your thyroid and then don't take

the supplement, you will slowly become comatose and die? We've had a couple

people here who had RAI whose doctors didn't seem aware of that fact, didn't

properly supplement for their dying thyroid, and came close to that result!

So, if my body is not letting the thyroid do it's job,

> then it is not really working currently now anyhow.

Huh? It's working overtime, producing too much thyroid hormone. All you need

to do is slow that production down, and you become normal again. Here's

another easy analogy: you have a factory, like the candy factory that Lucy

worked the assembly line in...remember the show? She couldn't keep up with

production, and everything went awry? Well, that was comedy, but in real

life you have this conveyor belt producing thyroid hormone...the gears get

stuck on super-fast, and the hormone gets dumped all over the blood stream.

Now, go back to the factory analogy--the manager can slow down the line, so

that the product can be controlled--isn't that a better solution than

blowing up the whole factory? Which, of course, would also " solve " the

problem...

now, with the

> meds, it can lower your white blood count nad effect your bone

> marrow. that scares me. with those lowered you have a much higher

> chance of getting sick, even a cold can be much worse if you do not

> have enough bone marrow.

If this is your major concern, you should become even better educated about

the statistical probability of lowered white blood count occurring. It's

<.5%. Nobody in this whole group of 800 plus people have had that happen. In

fact, when you're on ATD's you rarely get colds. I've never known anyone

with agranulocytosis (sp?), so I can't comment on the bone marrow part of

your statement, but it seems off to me. Again, if this is, as you state,

your " major concern " , you are putting your energy in the wrong place.

One concern with people with active GD is the possibility of osteoporosis.

This is because, untreated, your body processes nutrients so fast you don't

absorb much of them from what you eat. Once on ATD's, and with the GD under

control, this ceases to be a problem. I've been on ATD's for 9 years, more

or less--and my bone scan was high-normal everywhere they tested.

That is my major concern. and, i have

> spoken (face to face) with so many people who did the meds and then

> ended up doing the RAI anyway. to me, that seems to be a waste of

> time, and money, on a chance that they may work. Also, the meds take

> a lot of time, as they work slowly (could be both a pro and a con).

Did you know that the " proper " way to do RAI is to stabilize you on meds

first? Did you know that right after RAI ablation, your dying thyroid gland

" dumps " a huge amount of hormone into your system, and that if your levels

are really high before ablation, this can precipitate thyroid storm, a

life-threatening event?

>

> Now the RAI worries me about the eye stuff, and that is about it.

> but again, the people i spoke with, said once they got on the meds

> after the RAI and got to a normal level, the didn't have any eye

> problems. basically, they were back to feeling good within 3

> months. and going hypo and gaining waight is a concern, as i have

> already gained enough weight if you ask me.

I find it interesting that you gloss over the eye problems, which to me,

having known people up close and personally who are going through them, are

the absolute scariest part of GD. I am personally blessed--I don't (at this

point) have any. But a friend and co-worker does, and has had to take a long

leave of absence, since she's unable to work, drive, function at all with

the eye problems. " the eye stuff " is no joke!

I read a story in the SF Chronicle last week, I'm going to put the URL here

so you can read it too. The part I want you to pay attention to, is how the

writer, who had a brain tumor, talked to someone who opted for the treatment

she chose. And got information that didn't come close to what the experience

was really like. And, read the part where she confronts the guy later, ok?

http://www.sfgate.com/cgi-bin/article.cgi?file=/chronicle/archive/2003/09/26

/DD217782.DTL

Yes, people gloss over their problems--they don't want anyone else to feel

bad! Also, post-RAI, doctors seem to have a habit of denying that the

patients' newly found physical problems, from rapid weight gain to arthritic

joints to lack of enough energy to get through the day, have anything to do

with their lack of a thyroid. I can't tell you how many people have come

through here saying that they gained huge weight, and the doc said that it

was because they were gluttons! Well, personally, I went accidentally hypo

for about 10 days--not even that hypo, just levels in low-normal ranges by

the tests--and I gained 10 lbs.! I didn't even have an appetite during that

time, and ate probably 1/4 of my normal diet.

>

> and, i don't feel that bad. i am tired.

You don't know what tired is, till you've been hypo! Tired to the point

where you think you have a mess of cotton candy where your brain was, where

the effort to walk to the other side of the room is too much to bear, where

your thoughts won't go in a straight line...

I am not irrational, i can

> think just fine. From what many say, it sounds to me as if they are

> jumping out of their skin being hyper and all, i am not. Since

> getting the diagnosis a week ago, after tuesday (once it sank in) i

> am feeling very calm, and better then i have in a long time, as i

> feel i have an answer about this.

You describe yourself as being mildly hyper thyroid. A simple course of

ATD's, such as Tapazole, will bring you back to normal.

>

> I have very stong faith as i am a very stong Christian. i have

> prayed about this, and do feel i am going to be fine. i just need to

> make the decision that is best for me.

Faith is wonderful, but what comes to mind is that old saw " G-d helps those

who help themselves " .

>

> So, these are the thoughts that have been going on in my mind the

> past few days. I see pros and cons to both. there are side effects

> with all of the treatment (but i am not concerding the surgery at

> all) so i think i just need to decide which side effect is better for

> me.

I would suggest that you TRY the ATD's first. Share your test results with

us--the Free T4 Free T3 and TSI antibodies--the TSH means virtually nothing

at this point--and keep reading and educating yourself. There is NO reason

to make a permanent decision without all the facts! Go to Mediboard and

follow the Thyroid 101 thread. Get Elaine 's book, Graves Disease, a

Practical Guide. Read our archives. Ask questions. Assert yourself with your

doctor and get the correct tests run.

>

> anyhow, hope this can explain a bit about where i am at.

> thanks for listening,

> Sassy

>

And thanks to you for listening to me--I hope I made sense to you. It's just

too hard, when I see people come through here after RAI, and I know from

experience that they didn't have to bring this mountain of problems down

onto their heads!

Terry

dx '94, Tapazole since. Came close to remission and got a bad batch of

generics. Currently on about 2 mg./day, levels normal (waiting on some lab

results right now). Life is good!

>

>

>> Hi Sassy,

>>

>> This question has me worried for you.

>>

>> Have you not been treated for your hyper yet ? That must feel awful.

>>

>> They should have you on meds by now. You poor thing.

>>

>> You do get to choose what the treatment will be, BUT ... to do

> anything

>> permanent, while you are still hyper is a very bad thing. Hyper

> makes it

>> very difficult to think clearly. We all understand this because we

> were all

>> once too hyper also. That is why they all suggested using the drugs

> first.

>>

>> That way you have a chance to find out all you need to know about

> the immune

>> system and our hormones. This IS what you MUST learn, to be in

> charge of

>> your own body.

>>

>> Please, please never base such an important choice like killing the

> master

>> gland of your body, on anyone else's OPINION.

>>

>> Lots and lots of people have opinions. That does not mean they are

> correct.

>>

>> Once you have FACTS, then you will be able to judge opinions. But

> not until

>> then. And this can NOT be learned in only a few weeks.

>>

>> The anti thyroid drugs do work. And if you change your mind later,

> you can

>> then have surgery or RAI. But those choices are one time only. No

> going back

>>

>>

>> Do you have copies of your lab results yet ?

>> We want to help you, but like they all said earlier, we need facts

> to be

>> able to help you.

>>

>> There is unfortunately no person or doctor anywhere than can fix

> any of this

>> FOR you.

>> You now have an autoimmune disease for life.

>> What you do now WILL affect your entire future..... right up until

> the day

>> you die.

>>

>> And if you do the RAI and are near your children the first few

> weeks, it

>> will affect THEM for life.

>>

>> You had better take all of this very seriously, and do NOT trust

> anyones

>> OPINION. Lets face it, half the people in the world are on the

> bottom half

>> of the intelligence scale. You have no way of knowing which half .

>>

>> Here is a accurate site that should help you.

>> http://www.suite101.com/article.cfm/graves_disease/67961

>> and also

>> http://www.suite101.com/article.cfm/graves_disease/84431

>>

>> Sassy... Please feel free to ask any specific questions, or tell us

> what

>> your concerns are. Between the group of us, some one will

> undoubtedly have

>> the answer. Or we at least know how to look it up.

>>

>> -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]

Hi Sassy-

I've prayed a lot about this and know RAI (I didn't pray about it then)

wasn't the right choice for me but hope God will use my experience to help

others.

I had RAI long ago and have had nothing but medical trouble and heartache

since. For me, the worst has been infertility after RAI, both the inability

to get pregnant and the subsequent losses when I was finally able to. I do

have 3 children now (one 7 year old and 9 mo old twins) but I don't know if

I'll ever be at peace with how I ended up with the twins (they are beautiful

though and I love them with all my heart).

Fully 33% (according to studies) of people don't do well after RAI. If any

other treatment resulted in that kind of failure rate, it wouldn't be an

option. Perhaps they opt for that because they don't look at it as a

failure as long as the patient's thyroid stops overproducing hormone (due to

autoantibodies). After the patient is stabilized, they only see the doctor

once/year for bloodtests. The patient then has to rely on how the doctor

says they are doing, not on how the patient feels as long as blood thyroid

hormone levels are anywhere within the normal range.

And, I suppose some people don't think it's a big deal to take a pill once a

day for the rest of their lives. But when 9/11 happened I wasn't able to

get my drugs for 4 days. Since I'm also on T3, which has a very short 1/2

life, it profoundly affected my ability to function during that time.

Anyhow, you have to choose what will be best for you and regardless of what

you decide, we will be here to help you.

Take care,

dx & RAI 1987 (at age 24)

> Pam,

>

> thank you for your responce and concern. Here is what i know, and

> what i am thinking. Please everyone, don't gang up on me about

> things. First of all, my t4 is 13.5 and my TSH is <0.1. I had

> another test ran last week and i will go in and pick up my lab work

> then. I belive the nurse told me it was still <0.1. monday i will

> have the thyroid uptake done. basically they will do an ultrasound

> of my thyroid and count something. not sure what, but am interested

> in the ultrasound.

>

> Now, here are my thoughts and concerns. It seems to me, that in the

> groups there are a lot of people who are against the RAI. however,

> in my church there are some people who have had it and think it is

> wonderful. Some of them tried natural ways and after a few years did

> the RAI because it wasn't working.

>

> From what i understand, Graves disease (my autoimune system) is

> attacking my thyroid and not letting it do its job. Well, to me, one

> can't exactly get rid of the imune system, so the thyroid is the next

> best option. So, if my body is not letting the thyroid do it's job,

> then it is not really working currently now anyhow. now, with the

> meds, it can lower your white blood count nad effect your bone

> marrow. that scares me. with those lowered you have a much higher

> chance of getting sick, even a cold can be much worse if you do not

> have enough bone marrow. That is my major concern. and, i have

> spoken (face to face) with so many people who did the meds and then

> ended up doing the RAI anyway. to me, that seems to be a waste of

> time, and money, on a chance that they may work. Also, the meds take

> a lot of time, as they work slowly (could be both a pro and a con).

>

> Now the RAI worries me about the eye stuff, and that is about it.

> but again, the people i spoke with, said once they got on the meds

> after the RAI and got to a normal level, the didn't have any eye

> problems. basically, they were back to feeling good within 3

> months. and going hypo and gaining waight is a concern, as i have

> already gained enough weight if you ask me.

>

> and, i don't feel that bad. i am tired. I am not irrational, i can

> think just fine. From what many say, it sounds to me as if they are

> jumping out of their skin being hyper and all, i am not. Since

> getting the diagnosis a week ago, after tuesday (once it sank in) i

> am feeling very calm, and better then i have in a long time, as i

> feel i have an answer about this.

>

> I have very stong faith as i am a very stong Christian. i have

> prayed about this, and do feel i am going to be fine. i just need to

> make the decision that is best for me.

>

> So, these are the thoughts that have been going on in my mind the

> past few days. I see pros and cons to both. there are side effects

> with all of the treatment (but i am not concerding the surgery at

> all) so i think i just need to decide which side effect is better for

> me.

>

> anyhow, hope this can explain a bit about where i am at.

>

> thanks for listening,

> Sassy

[Guest guest]

I take 1 baby asprin a day because of history of miscarriage and the

MTHFR gene. I would not take 4-6 if you need something for pain or a

headache use tylenol. - Diane

> I just had my yearly appt with gyn and she gave the go ahead to

ttc. Said to start taking folic acid and because of my multiple

miscarriges she said to take childrens asprin. I will be seeing a

fertility specialist but my appointment isn't till Aug 12. My

question to those who take the asprin, how much do you take? The box

says 4-8 tablets a day.

>

> --

> Joy

> open RNY 6/5/03

> 290/180

[Guest guest]

will having a baby now stretch out the stomach pouch like " lgbelong " was told?

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

Moderator note: I had GBS 4.5 years ago and still cant eat more than 1/2 of a

quarter pounder or about 3, maybe 4 bites of a Big Mac. Nothing has changed

sizewise in my stomach since about 6-8 months post-op, even after pregnancy and

gaining 18#.

Sheila

[Guest guest]

take one 81 mg (children's is the same dosage) per day, that's it. it helps

with blood thinninga nd other things...make suer it is a low dose, 81 mg asprin

and only take one. jenn

>

> From: jdrsavon@...

> Date: 2004/07/14 Wed AM 11:06:12 EDT

> To: OSSG-pregnant

> Subject: question

>

>

[Guest guest]

Alison,

Being pregnant has nothing to so with your pouch. You carry the baby in

the uterus, which grows month to month. I made sure of this before I concieved

this second child.

D.

Texas

Lap WLS 4-18-03

-100 pounds

Pregnant with 2nd child! ;-)

~Home Interiors & Gifts Consultant~