Maybe By Monday...

[Guest guest]

Well Monday came and went. For many things I still

have no answers. I'm not sure any of us ever will.

But, there are still dishes to do and homework to

finish and, let us hope, there will always be web

sites to code

But hopefully there will not always be an inner tube

around my neck! My appointment with a different endo

went very well. She spent more than an hour just

talking to me about my experiences with Graves' over

the past year. I received more information from her

in this one appt than I have with the other guy in a

year.

She relieved most of my concerns about RAI and

although I really wish there were other options, I

think this is going to be the safest, fastest way

towards " better " for me. Safest because my only other

option is surgery and based on the size of my goiter

my risk of complications has increased 20 fold.

Fastest because, again based on the size, she agrees

we need to do someting NOW! After several (6?) months

of no one really seeming to be concerned except me, it

was kind of refreshing to have an actual, real, live

doctor express some of the urgency I've been feeling

about all of this.

She gave me a referral to a neuropthamologist to have

my lid lag (lig lad) checked. Apparently I have it

and we need to make sure RAI won't aggravate it more.

I get blood drawn Friday and then again next week and

go back in on 10-9 to schedule everything.

As hesitant as I am about this I'm sort of excited

that something is actually going to happen. Or could

happen. Or might happen. I know that I won't wake up

the next day minus the inner tube but... I can dream

can't I

She did tell me that I should probably not sleep flat

on my back between now and then, just in case. And

asked me if I eat meat? I looked at her kind of funny

and she laughed and pointed out that if I was a

carnivore she would encourage me to chew that hunk of

steak really, really well before I decided to swallow.

I told her these days, with 3 kids, our life is more

Hamburger Helper than Filet Mignon.

The funniest moment came when she was sitting at the

little desk and I was sitting in the chair next to the

little desk and she was asking me questions and

writing down answers. She stopped writing, rubbed her

hands together and then jumped up. She looked over at

me and aksed, " Are you cold - oh, wait, you're hypo

now, of course you're cold! " and went running out of

the room! I was freezing but figured it was just me

because, I'm hypo now, of course I'm always cold! She

went out in the hall and made the appropriate

adjustments to the thermostat.

I asked lot's of detailed questions and she gave me

answers for all of it without being the least bit

condescending. She talked a lot about the ways other

endos handle things and why she likes to do it

different. Her differents and my differents were

about the same. One of the docs she used to work with

has a really high success rate with RAI because he

takes patients off ATDs for three weeks prior. Geez!

She says she usually tries 7-10 days. She's going to

talk to the nuclear medicine guys and see what is the

shorest amount of time I can be off and still get

usable results from the uptake.

She is concerned, because I did the whole storm thing

while on meds, that taking me off for more than a few

days could be very bad. I guess there was some type

of problem with getting my labs faxed over and she

didn't have any of the numbers but didn't say anything

for quite awhile. When I mention the storm she seemed

hesitant and I knew she was doubting that it was truly

a " clinical " storm. That was when I realized she

didn't have any numbers. She sat back sort of amazed

as I quoted 8 months worth of lab results to her out

of my head! Yea, the fog lifted at just the right

time! (Then returned a few moments later when I

couldn't remember the word for that other ATD, you

know, the one that's not Tapazole that I'm allergic

to, that's just letters!)

The inpatient lab results combined with other symptoms

and the fact that they really, really did say " Thyroid

Storm " on my discharge paperwork convinced her it was

actually that. So she wants to keep me on meds as long

as possible to avoid further complications. That

would really piss me off if I decided to do all this,

we started all this and the day before I take the

stuff I got all freaky again and they couldn't do it!

So here's your chance. I want to hear the success

stories and the horror stories. The good, the bad and

the ugly. Ya'll tell me anything you want to tell me

because I've only got about two weeks to change my

mind!

Thanks!

Gayla

__________________________________________________

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[Guest guest]

Dear Gayla

Your Dr sounds lovely. It is great to have someone who listens to you,

especially when you have been so ill. I can't

comment on RAI (except that many here will tell you to run a mile before taking

that little 'innocent looking'

pill), but I'd like to ask you about the size of your goitre. I had an enormous

goitre and have had success with a

subtotal thyroidectomy. I had months of choking sensations when I ate,

difficulty sleeping etc.

I hadn't heard that surgery would be out if the goitre was too big. I did have

some problems with my parathyroids

being damaged during surgery. Are these the complications you mentioned or are

there others?

Cheers

Caroline

[Guest guest]

Sorry I'm no help, Gayla, on the experience with RAI, but I am glad you've found

a helpful endo and I can understand your excitement about actually getting

something done so you can get on with your life! I wish you good luck and let us

know how it turns out. I'm sure there are many more here who can tell you about

the RAI.

Maybe By Monday...

Well Monday came and went. For many things I still

have no answers. I'm not sure any of us ever will.

But, there are still dishes to do and homework to

finish and, let us hope, there will always be web

sites to code

But hopefully there will not always be an inner tube

around my neck! My appointment with a different endo

went very well. She spent more than an hour just

talking to me about my experiences with Graves' over

the past year. I received more information from her

in this one appt than I have with the other guy in a

year.

She relieved most of my concerns about RAI and

although I really wish there were other options, I

think this is going to be the safest, fastest way

towards " better " for me. Safest because my only other

option is surgery and based on the size of my goiter

my risk of complications has increased 20 fold.

Fastest because, again based on the size, she agrees

we need to do someting NOW! After several (6?) months

of no one really seeming to be concerned except me, it

was kind of refreshing to have an actual, real, live

doctor express some of the urgency I've been feeling

about all of this.

She gave me a referral to a neuropthamologist to have

my lid lag (lig lad) checked. Apparently I have it

and we need to make sure RAI won't aggravate it more.

I get blood drawn Friday and then again next week and

go back in on 10-9 to schedule everything.

As hesitant as I am about this I'm sort of excited

that something is actually going to happen. Or could

happen. Or might happen. I know that I won't wake up

the next day minus the inner tube but... I can dream

can't I

She did tell me that I should probably not sleep flat

on my back between now and then, just in case. And

asked me if I eat meat? I looked at her kind of funny

and she laughed and pointed out that if I was a

carnivore she would encourage me to chew that hunk of

steak really, really well before I decided to swallow.

I told her these days, with 3 kids, our life is more

Hamburger Helper than Filet Mignon.

The funniest moment came when she was sitting at the

little desk and I was sitting in the chair next to the

little desk and she was asking me questions and

writing down answers. She stopped writing, rubbed her

hands together and then jumped up. She looked over at

me and aksed, " Are you cold - oh, wait, you're hypo

now, of course you're cold! " and went running out of

the room! I was freezing but figured it was just me

because, I'm hypo now, of course I'm always cold! She

went out in the hall and made the appropriate

adjustments to the thermostat.

I asked lot's of detailed questions and she gave me

answers for all of it without being the least bit

condescending. She talked a lot about the ways other

endos handle things and why she likes to do it

different. Her differents and my differents were

about the same. One of the docs she used to work with

has a really high success rate with RAI because he

takes patients off ATDs for three weeks prior. Geez!

She says she usually tries 7-10 days. She's going to

talk to the nuclear medicine guys and see what is the

shorest amount of time I can be off and still get

usable results from the uptake.

She is concerned, because I did the whole storm thing

while on meds, that taking me off for more than a few

days could be very bad. I guess there was some type

of problem with getting my labs faxed over and she

didn't have any of the numbers but didn't say anything

for quite awhile. When I mention the storm she seemed

hesitant and I knew she was doubting that it was truly

a " clinical " storm. That was when I realized she

didn't have any numbers. She sat back sort of amazed

as I quoted 8 months worth of lab results to her out

of my head! Yea, the fog lifted at just the right

time! (Then returned a few moments later when I

couldn't remember the word for that other ATD, you

know, the one that's not Tapazole that I'm allergic

to, that's just letters!)

The inpatient lab results combined with other symptoms

and the fact that they really, really did say " Thyroid

Storm " on my discharge paperwork convinced her it was

actually that. So she wants to keep me on meds as long

as possible to avoid further complications. That

would really piss me off if I decided to do all this,

we started all this and the day before I take the

stuff I got all freaky again and they couldn't do it!

So here's your chance. I want to hear the success

stories and the horror stories. The good, the bad and

the ugly. Ya'll tell me anything you want to tell me

because I've only got about two weeks to change my

mind!

Thanks!

Gayla

__________________________________________________

Terrorist Attacks on U.S. - How can you help?

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[Guest guest]

Hi Gayla,

I don't have no stories to tell on RAI, but I will say that I am happy

you've found someone to listen to you. That is so important having a doctor

who listens, talks and explains things. I've found just like working that

you have to be happy with your doctor, just like someone needs to be happy

with their job.

I pray that soon you get the results that you need and can get rid of that

inner tube around your neck. Remembering the days when I had that

squeezing, choking effect going on with my neck. You couldn't lay down flat

on your back and it even bothered me to sit in the dentist chair. It isn't

fun!

Good luck and keep us up to date.

Debbie R.

[Guest guest]

Hi Gayla,

It's good that you're researching this so thoroughly. I didn't when I should

have and now I regret it. I had RAI. For me this was a mistake especially

since I had very mild GD at the time. My situation wasn't like yours so I

won't go into the details except to say that for me symptoms of hypoT have

been far worse than any hyper symptoms I had. And they continue to worsen

with time.

I wanted to mention though that I've read in several textbooks, including

Clinical Textbook of Endocrinology, that RAI is not recommended for

people with large goiters. The reason for this is because the gamma rays in

RAI kill cells at the end of their path length. For large dense goiters, a

smaller amount of cells are destroyed and sometimes the epithelial cells,

rather than the target follicular cells are destroyed. Several studies report

that large goiter size, rather than pretreatment with ATD's, is the main

reason some people need to have multiple RAI procedures and that surgery is a

better option when goiters are large.

You can probably also find some sources that say RAI is recommended for large

goiters, but it would be good if you researched the topic more before

deciding on permanent treatment. Best to you, Elaine

[Guest guest]

I spoke to someone who was referred to me as a lay expert in medical

referrals (specifically cancer) but who has two sons-in-law with GD.

While she kept to the party line about the amount of radiation being safe

she stressed the need to find an endo who would take a careful medical

history, callibrate the amount carefully, and medicate appropriately

afterwards. Unfortunately, such endos are few and far between. The endo

she referred people to in her area (metro NY) no longer practices and the

dr. who took over his practice doesn't follow her recommendations. While

I accept the possiblity that I may have to have RAI somewhere down the

road I would choose a dr. very carefully.

It sounds like you may have found one of those rare gems who knows how to

do RAI. Some things you want to look into are, will you have to face

multiple RAI because of your goiter? Also check out the research on

steriod treatment before RAI reducing the risk/severity of GO. And, is

surgery an option, as far as insurance and availabitlity of experienced

drs. go? I'm sure others will add to this list.

Take care,

Fay

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[Guest guest]

Hi Gayla-

I feel so guilty telling you this because I don't see how it will really

help and I can't pretend to know enough about your specific case. But I

will and you can decide how to use the information. From your post, you

really do want to know. Keep in mind as you're reading this that you don't

have to have the same experience after RAI that I have. I wasn't aggressive

enough about my care.

I think I've mentioned it to you before but I was 24 when I had RAI, I'm now

38. I've had trouble ever since. However, I was doing OK on ATDs (at least

much better than I did after RAI). Since then I've had trouble controlling

any hypo symptoms even though I'm taking almost twice the thyroid hormone

that normal people do now. Many symptoms are much better than they used to

be though.

I was told that I'd have some thyroid function of my own left after RAI. In

fact, they told me that I'd either have normal thyroid function or would be

a little hypo. But my thyroid finished completely dying 9 years ago. I was

told I had no choice and that I could die if I didn't have RAI.

That said. There is no question that I had a severe case of Graves'. I had

a waking HR of 150+ BPM, exophthalmus and a huge goiter. I soaked all my

clothes with sweat even in the middle of winter. I shook pitifully and was

so weak I spent most of the time laying on the couch. That was before I was

treated with ATDs.

I was on ATDs for 6 months when the decision for RAI was made. Both my

husband (a physician) and I (a biologist) deeply regret that we made the

choice for RAI. At that time, we really thought RAI was the best choice

since I was told I couldn't stay on ATDs (not true! I had no bad side

effects).

After RAI, I became even worse. I was violent and my exophthalmus became

severe. It took almost a year for things to start settling down for me.

Then I had a whole new set of problems. My goiter did, however, eventually

disappear.

If you do decide to have RAI, I think it's very important for your doctor to

carefully follow you because you have a history of thyroid storm. Having

RAI will cause a lot of thyroid cells to die off rapidly dumping stored

thyroid hormone into your system. So, initially after RAI, you will become

even more hyperthyroid if left untreated. Also, RAI tends to exaccerbate

TED so you should start eye treatments before RAI especially since you're

already showing signs of it.

If you do choose RAI, it'll take 2 or 3 months before you stop dumping

thyroid hormone at such a quick rate. Then it slows down since thyroid

cells aren't dying off at such a rapid rate. For most people, things start

to calm down after this time.

Anyhow, part of my problem may have been because no one really monitored me

after RAI so I had a chance to become pretty hypothyroid before I finally

went to an endocrinologist 11 years later. I can't blame the doctors that

much. My TSH was always kept at the mid-normal to high-normal range (many

doctors don't do this anymore-they keep it in the low to mid normal range).

My real problem was that I could no longer convert T4 (replacement hormone)

to T3 (active hormone) effectively and I had never had my T3 levels checked

before. When I finally went to the endocrinologist, he checked my FT3 and

Total T3 levels which were both very low. I don't how I would be now if I

had been properly monitored at the outset.

I do have to mention, that so far, I no longer have any antibodies that

suggest I have autoimmune disease. I haven't been completely tested for

everything but the ones I have had run are negative. So I've been kind of

bummed because I would obviously be in remission if I still had a thyroid

gland. And with the infertility, having no thyroid at all is just another

problem added onto it. In fact, there are a couple of papers that say

hypothyroidism induces PCOS.

Whew! That's my story. It doesn't help that I'm long-winded.

Take care,

-

> Well Monday came and went. For many things I still

> have no answers. I'm not sure any of us ever will.

> But, there are still dishes to do and homework to

> finish and, let us hope, there will always be web

> sites to code

>

> But hopefully there will not always be an inner tube

> around my neck! My appointment with a different endo

> went very well. She spent more than an hour just

> talking to me about my experiences with Graves' over

> the past year. I received more information from her

> in this one appt than I have with the other guy in a

> year.

> She relieved most of my concerns about RAI and

> although I really wish there were other options, I

> think this is going to be the safest, fastest way

> towards " better " for me. Safest because my only other

> option is surgery and based on the size of my goiter

> my risk of complications has increased 20 fold.

> Fastest because, again based on the size, she agrees

> we need to do someting NOW! After several (6?) months

> of no one really seeming to be concerned except me, it

> was kind of refreshing to have an actual, real, live

> doctor express some of the urgency I've been feeling

> about all of this.

>

> She gave me a referral to a neuropthamologist to have

> my lid lag (lig lad) checked. Apparently I have it

> and we need to make sure RAI won't aggravate it more.

> I get blood drawn Friday and then again next week and

> go back in on 10-9 to schedule everything.

>

> As hesitant as I am about this I'm sort of excited

> that something is actually going to happen. Or could

> happen. Or might happen. I know that I won't wake up

> the next day minus the inner tube but... I can dream

> can't I

>

> She did tell me that I should probably not sleep flat

> on my back between now and then, just in case. And

> asked me if I eat meat? I looked at her kind of funny

> and she laughed and pointed out that if I was a

> carnivore she would encourage me to chew that hunk of

> steak really, really well before I decided to swallow.

> I told her these days, with 3 kids, our life is more

> Hamburger Helper than Filet Mignon.

>

> The funniest moment came when she was sitting at the

> little desk and I was sitting in the chair next to the

> little desk and she was asking me questions and

> writing down answers. She stopped writing, rubbed her

> hands together and then jumped up. She looked over at

> me and aksed, " Are you cold - oh, wait, you're hypo

> now, of course you're cold! " and went running out of

> the room! I was freezing but figured it was just me

> because, I'm hypo now, of course I'm always cold! She

> went out in the hall and made the appropriate

> adjustments to the thermostat.

>

> I asked lot's of detailed questions and she gave me

> answers for all of it without being the least bit

> condescending. She talked a lot about the ways other

> endos handle things and why she likes to do it

> different. Her differents and my differents were

> about the same. One of the docs she used to work with

> has a really high success rate with RAI because he

> takes patients off ATDs for three weeks prior. Geez!

> She says she usually tries 7-10 days. She's going to

> talk to the nuclear medicine guys and see what is the

> shorest amount of time I can be off and still get

> usable results from the uptake.

>

> She is concerned, because I did the whole storm thing

> while on meds, that taking me off for more than a few

> days could be very bad. I guess there was some type

> of problem with getting my labs faxed over and she

> didn't have any of the numbers but didn't say anything

> for quite awhile. When I mention the storm she seemed

> hesitant and I knew she was doubting that it was truly

> a " clinical " storm. That was when I realized she

> didn't have any numbers. She sat back sort of amazed

> as I quoted 8 months worth of lab results to her out

> of my head! Yea, the fog lifted at just the right

> time! (Then returned a few moments later when I

> couldn't remember the word for that other ATD, you

> know, the one that's not Tapazole that I'm allergic

> to, that's just letters!)

>

> The inpatient lab results combined with other symptoms

> and the fact that they really, really did say " Thyroid

> Storm " on my discharge paperwork convinced her it was

> actually that. So she wants to keep me on meds as long

> as possible to avoid further complications. That

> would really piss me off if I decided to do all this,

> we started all this and the day before I take the

> stuff I got all freaky again and they couldn't do it!

>

> So here's your chance. I want to hear the success

> stories and the horror stories. The good, the bad and

> the ugly. Ya'll tell me anything you want to tell me

> because I've only got about two weeks to change my

> mind!

>

> Thanks!

> Gayla

[Guest guest]

Awwww man! Just when I think I have it all figured

out leave it to Elaine to come along and tell me to

read more!

I actually haven't heard that so I will look into it.

We did discuss the possibility of multiple RAI and I

still think that would be better than surgery. But,

I'll go back now and look at the issues you mentioned.

My inner tube and I thank you for the info!

Gayla

--- daisyelaine@... wrote:

> Hi Gayla,

> It's good that you're researching this so

> thoroughly. I didn't when I should

> have and now I regret it. I had RAI. For me this was

> a mistake especially

> since I had very mild GD at the time. My situation

> wasn't like yours so I

> won't go into the details except to say that for me

> symptoms of hypoT have

> been far worse than any hyper symptoms I had. And

> they continue to worsen

> with time.

>

> I wanted to mention though that I've read in several

> textbooks, including

> Clinical Textbook of Endocrinology, that

> RAI is not recommended for

> people with large goiters. The reason for this is

> because the gamma rays in

> RAI kill cells at the end of their path length. For

> large dense goiters, a

> smaller amount of cells are destroyed and sometimes

> the epithelial cells,

> rather than the target follicular cells are

> destroyed. Several studies report

> that large goiter size, rather than pretreatment

> with ATD's, is the main

> reason some people need to have multiple RAI

> procedures and that surgery is a

> better option when goiters are large.

>

> You can probably also find some sources that say RAI

> is recommended for large

> goiters, but it would be good if you researched the

> topic more before

> deciding on permanent treatment. Best to you, Elaine

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

Terrorist Attacks on U.S. - How can you help?

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[Guest guest]

Hi Gayla,

It sounds like you may have found a wonderful dr. who is going to encourage

your involvement in your care! That is a huge benefit!

I'm not going to pull any punches...I think I told you my tale of RAI not to

long ago (shortly after your storm I believe so it is in the archives)...I

have had thyroid storm before being diagnosed with GD, it is what eventually

led to my dx.

Once I got to my first endo, she gave me my choices...surgery or RAI. She

had us watch a thyroid video which talked about all three treatments

available...but in her opinion I was way to sick for ATD's I needed

something permanent right away. Well I was like you, no way no how NO

SURGERY! I wasn't going under anyone's knife and take the chance I wouldn't

be able to talk again. So this wonderful video (a Time/Life video...and we

all respect and like Time and Life so it MUST be true) told us how safe,

successful and painless it all was...just take this little pill and let it

do all the work...the tape cautioned about the surgery...make sure you find

a surgeon who is well versed and does several thyroid surgeries a year (this

is absolute TRUTH) and it talked about the ATD's and how 'inconvenient' they

could be because one of the problems with us is that we don't always

remember to take our doses when recommended or something along that

line...they weren't of concern to me because I was told I wasn't a candidate

for them. (Note here...I don't always remember to take my pills now, at

least not on time some of the time)

Well hubby and I decided the RAI over the surgery, it would be the *easiest*

way for me...so the appointment was made. I didn't have a computer then, so

I never researched, only saw the video and read what the first endo gave me

and trusted docs in a blind faith sort of way. We went to Hamot Medical

Center in Erie, Pa because our very large hospital wasn't *allowed* to have

the kind of doses of I131 on premises. We went to the nuclear medicine

department, into a room with a lead door...in walks the doc, goggles on on

his face, a mask, his head covered, his body covered in a very long lead

apron, lead gloves up to his elbows, and something on his feet carrying a

small lead container, with a lead lid with a test tube inside that had a lid

and the little pill was in that. He handed me the lead container and told

me to take the pill out and swallow it with the water he gave me. Oh...I

forgot, my appointment was for 10 a.m....I didn't get ushered into a room

until almost 11 because the pill is special delivery at the appropriate

time, because even at that hospital, it couldn't be on premises for an

extended period of time.

It was at this time after removing the lead lid off the container and had

the test tube in my hand that I started wondering about things. But still I

continued, I took that innocent looking capsule out of there and held it in

my hand that I started asking the nuclear doc how *safe* was this

REALLY...talking with my hands of course...he kept backing away, telling me

to take the pill, pushed my husband out of the room and said TAKE THE DAMN

PILL! Oh wow, I ticked off the doc so I'll take it and then ask my

questions....<sigh>

Anyhow, that was my morning on June 7, 1996. On July 7 I went to see the

endo and have blood work done...all my numbers were still way to high and I

was still hyper, it could take 2/3 months and I might need another dose of

RAI in 6-12 mos. Oh...my dose was 13.9 milicurries, have been told, that is

low, that is high and that is moderate so I have no clue. Well on July

wither 21st or 26th (can't remember exactly) it was all I could do to get

out of bed and make it to the couch, I literally left the couch only 1 time

all day to crawl upstairs to go to the bathroom and get back down. Hubby

got home from work at 3:40 and called the endo, she had him take me down to

the hospital for blood work stat...she called back the next morning and said

I had to start my hormone replacement immediately as I had crashed into hypo

and even she had never seen anyone whose labs were still very hyper go to

very hypo that quickly...less than 2 weeks. Well I started synthyroid that

day, .75 or.075 however they do it, I don't take it anymore...but because my

TSH was in the normal range no one, not that endo, not the second endo and

not my primary EVER changed my dose until after I had gotten to this group

and started learning...then I got my primary to run the FT3 and FT4 and he

increased it to .088 and left me. I was hypo, I was depressed, my hair

continued to fall out, the weight continued to pile on, no one would listen

to my symptoms or complaints, said I needed prozac (tried it for 6 weeks

with endo number 2 for weight loss!)didn't like how it made me feel and got

off of it and will never take it again...last July I started with my new

endo. She ran the labs, increased my Synthroid to .125 and went back in

October...I told her I wasn't feeling much better and wanted a compound

script of T3/T4 geared for me...well we settled on Armour for over the

winter because we are both in the snow belt, and should I need her there is

always the chance of not being able to get to her office (she is in Buffalo

<g>). I have done relatively well on the Armour, I am 100% better than I

was before starting it though I am not 100%...I feel okay, but not great,

really not even *good* but okay...my hair isn't falling out, the weight has

stabilized (though not leaving)...I still have terrible muscle and joint

pain, my feet hurt so bad in the mornings when I first get out of bed I have

tears walking to the bathroom and now my eyes are definitely gravesie and

that scares me more than anything.

Okay...end of story. Would *I* recommend RAI to anyone, not a snowballs

chance in hell...I would say RUN RUN RUN!!!! ... but then, I didn't have

very good docs who had any kind of clue on this disease. Nor were they very

honest about what they did know...they give the info they are taught in med

school I think...or were taught there. More and more docs are becoming very

very cautious about recommending RAI...mine does not do it EXCEPT as a last

resort, and then I believe it is for thyroid cancer (which we do have a

greater chance of getting once we have had RAI)...no one told me RAI would

make eye problems worse or even create them in those who showed no signs of

GO at time of dx.

Now, the jest of this all is, it is YOUR decision, and yours alone, not your

docs, not your partners, not mine nor anyone else in this group...you are

doing the research and you are making an informed decision. If you do have

the RAI we are still ALL of us, in this together and if/when the hypo stuff

starts in a few years, we ar still all here for you! I do know the fear of

the storm, I do know about having the choking feeling that large goiters

present, I was rushed into RAI so didn't have the frustration, once

diagnosed, that you have with how lousy you feel...though I and all of us

know that lousy feeling

Do yourself a favor though...see the ophthalmologist FIRST...one who is very

familiar with GO or TED or GED whatever they want to call it. Tell him to

be brutally honest with you about the eye disease. Visit Diane's home page

(Diane if your out there please post the url...or someone that has it, I

don't have that bookmark right now). The eye disease is scarier than GD, in

my opinion. If the doc says reconsider I hope you will.

Also, ask your doc if she is open to T3 therapy, compound scripts and Armour

thyroid treatment. If she is a *synthroid* kind of doc...please keep

searching for another doc. Print up the symptom list that we all worked on

and Terry ding worked hard to put together for us...if you need it, let

me know I keep it in a folder on my desk top...take that list in and ask her

does she agree or disagree that these are ALL symptoms of GD. Is she says

that most of them aren't, keep searching for a doc for your own sake. That

list does not mean that we all have all of those symptoms, only that all of

those symptoms are possible under the categories that they appear in.

I do have one question for you, if you are now hypo, have your ATD's been

cut back? If not, why? One other thing to think about, you had thyroid

storm not so long ago while on ATD's, find out from your doc how dangerous

RAI is going to be for another storm right now, and that maybe being on

ATD's with and getting your numbers in the normal range and keeping them

there for at least 6 mos. wouldn't be the safer thing to do?

I'm not trying to scare you, just to let you know my experience and what it

continues to be because of RAI. I want my old life back, I want my mind

back, which is much much worse with hypo than hyper, and the object of RAI

is to make us hypO...so if your doc is going to go ahead with this and you

decide that you want it, make sure she will monitor you closely for the rest

of your life, that she will be available when you need her...not in 3 mos.

or 8 weeks, but when you need her. And also, remember this please, RAI is

NOT a quick fix, there are no quick fixes with this...2 are permanent, one

can lead to remission and a healthier you.

Okay, done now, ttyl I hope

Jody

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[Guest guest]

Dianne's URL is http://netnow.micron.net/~deecee/

Jody, are you sure you don't need an increase? With every increase I always

have hyper symptoms for a while and then they taper off. If it's too much

they don't taper off. It usually takes about 3 months to know.

The reason I ask is that muscle and joint pain is characteristic of

hypothyroidism (muscle pain can be characteristic of hyperthyroidism too).

Now I don't have either muscle or joint pain and many endos would think I'm

on much too much thyroid hormone for my size (or anybody's size). For the

11 years prior, I had visibly swollen joints that were very painful and I

had severe muscle pain.

Anyhow, this seems to be hit and miss at best.

Take care,

> Hi Gayla,

> It sounds like you may have found a wonderful dr. who is going to

encourage

> your involvement in your care! That is a huge benefit!

>

> I'm not going to pull any punches...I think I told you my tale of RAI not

to

> long ago (shortly after your storm I believe so it is in the archives)...I

> have had thyroid storm before being diagnosed with GD, it is what

eventually

> led to my dx.

>

> Once I got to my first endo, she gave me my choices...surgery or RAI. She

> had us watch a thyroid video which talked about all three treatments

> available...but in her opinion I was way to sick for ATD's I needed

> something permanent right away. Well I was like you, no way no how NO

> SURGERY! I wasn't going under anyone's knife and take the chance I

wouldn't

> be able to talk again. So this wonderful video (a Time/Life video...and

we

> all respect and like Time and Life so it MUST be true) told us how safe,

> successful and painless it all was...just take this little pill and let it

> do all the work...the tape cautioned about the surgery...make sure you

find

> a surgeon who is well versed and does several thyroid surgeries a year

(this

> is absolute TRUTH) and it talked about the ATD's and how 'inconvenient'

they

> could be because one of the problems with us is that we don't always

> remember to take our doses when recommended or something along that

> line...they weren't of concern to me because I was told I wasn't a

candidate

> for them. (Note here...I don't always remember to take my pills now, at

> least not on time some of the time)

>

> Well hubby and I decided the RAI over the surgery, it would be the

*easiest*

> way for me...so the appointment was made. I didn't have a computer then,

so

> I never researched, only saw the video and read what the first endo gave

me

> and trusted docs in a blind faith sort of way. We went to Hamot Medical

> Center in Erie, Pa because our very large hospital wasn't *allowed* to

have

> the kind of doses of I131 on premises. We went to the nuclear medicine

> department, into a room with a lead door...in walks the doc, goggles on on

> his face, a mask, his head covered, his body covered in a very long lead

> apron, lead gloves up to his elbows, and something on his feet carrying a

> small lead container, with a lead lid with a test tube inside that had a

lid

> and the little pill was in that. He handed me the lead container and told

> me to take the pill out and swallow it with the water he gave me. Oh...I

> forgot, my appointment was for 10 a.m....I didn't get ushered into a room

> until almost 11 because the pill is special delivery at the appropriate

> time, because even at that hospital, it couldn't be on premises for an

> extended period of time.

>

[Guest guest]

Hi ,

I'm not sure if I need an increase...I take the 90 and 15 of Armour now...I

was on the 120 for almost 4 months though and the hyper kept getting worse

and I had a few palps...then I dropped back to just the 90 and after 6 weeks

added the 15 back in...90 is just to low. I am going to hang at this dosage

until I see her next month and get new FT3/FT4. I can't help but wonder if

my body is rebelling because of all the changes it has gone through this

past year and it just needs to settle in for a bit before making any more.

Saying that may not sound quite right, but my body is so sensitive to any

med changes and always has been but I think changing every 6-8 weeks, it

just doesn't know how to react and waits for me to screw it up again. I

think I am going to try staying on the same dose for 4 mos. at a shot before

increasing again.

The aches and pains are no where near as bad as they were a year ago, and

maybe for me changing doses a bit more slowly is the way to go. After not

having any dosage change for 4 years, I think changing slowly may be the way

to go for now. I do have my lists for her though And I am not willing

to try Thyrolar, as she brought up last visit if I'm not doing better when I

see her. I don't trust any of the synthetic meds, my body just doesn't

convert T4 to T3, and they don't have all the other things that our body

makes and Armour has. I am even hesitant to go with a compound script at

this time because they are only made up of T3/T4. It is the quality of

conversion that is lacking for me.

TTYL

Jody

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[Guest guest]

,

I forgot, thank you for Dianes web addie. It isn't working for me right now,

the server may be down.

Gayla,

When this site is up again, please go there and see what GO or TED or GED

whatever your doc is calling it can be like. Read all the stories about

it...if memory serves me right, the stories on Dianes page are all from

people that have had RAI...something to keep in mind before deciding on that

route. Especially if you have some eye involvement already.

I hope some out there that have gone through the mill with the GO will write

to you and tell you their stories. The GO is not fun! As I said before,

this scares me more than anything about GD.

Take care,

Jody

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