Re: Re: Welcome to rai

[Guest guest]

Face it - I know that I for one come off somewhat forcefully when a

newbie contemplates RAI. (Look me up under the archives and you'll see a

message or two entitled " DON'T DO IT!! " ) ;-)

Not having internet access I'm not familiar with everything on the

website though I know I've saved a couple of classics (20 reasons not to

have RAI, questions to ask pre-surgery, etc.). Here's a modest proposal

for someone with time on his/her hands: how about a " ways to increase

success if you choose to have RAI " page, including gleanings from recent

posts from Simon and Jody. ( " If your dr. says....you're in trouble. " ) It

should include, but is by no means limited to, the following:

1. warnings - e.g. not to have RAI if TED is already present, with

appropriate annotated statistics; to take a few weeks before having RAI

to learn about GD. (These few weeks can be used for going on ATD's which

should be de riguer prep for RAI anyway.)

2. preparation - stabilizing on ATD's for several weeks prior to RAI,

studies on steroid treatment reducing the chance of post RAI TED etc.

3. an appropriate monitoring schedule and an introduction to the

different medications, info sources such as Shomon and thyroid lists

dealing primarily with hypo.

You know, the statistic that 80% of endos recommend RAI is bandied around

quite a bit. I would like to think - call me a naive dreamer ( " OK, you're

a naive dreamer " ) - that among those endos there are some who know how to

administer it and monitor; they can't all be the sort of lulus I

encountered so far (3 out of my 4 drs, or 75%). But twenty second century

medicine requires a degree of suspicion and preparation on the patient's

part that really takes a mental adjustment. I mean, when everyone,

medical professionals, relatives, relatives who are medical

professionals, tell you something you still have to look into it for

yourself. This was not easy for me to accept.

Take care and good night/morning/afternoon, Fay

________________________________________________________________

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[Guest guest]

Face it - I know that I for one come off somewhat forcefully when a

newbie contemplates RAI. (Look me up under the archives and you'll see a

message or two entitled " DON'T DO IT!! " ) ;-)

Not having internet access I'm not familiar with everything on the

website though I know I've saved a couple of classics (20 reasons not to

have RAI, questions to ask pre-surgery, etc.). Here's a modest proposal

for someone with time on his/her hands: how about a " ways to increase

success if you choose to have RAI " page, including gleanings from recent

posts from Simon and Jody. ( " If your dr. says....you're in trouble. " ) It

should include, but is by no means limited to, the following:

1. warnings - e.g. not to have RAI if TED is already present, with

appropriate annotated statistics; to take a few weeks before having RAI

to learn about GD. (These few weeks can be used for going on ATD's which

should be de riguer prep for RAI anyway.)

2. preparation - stabilizing on ATD's for several weeks prior to RAI,

studies on steroid treatment reducing the chance of post RAI TED etc.

3. an appropriate monitoring schedule and an introduction to the

different medications, info sources such as Shomon and thyroid lists

dealing primarily with hypo.

You know, the statistic that 80% of endos recommend RAI is bandied around

quite a bit. I would like to think - call me a naive dreamer ( " OK, you're

a naive dreamer " ) - that among those endos there are some who know how to

administer it and monitor; they can't all be the sort of lulus I

encountered so far (3 out of my 4 drs, or 75%). But twenty second century

medicine requires a degree of suspicion and preparation on the patient's

part that really takes a mental adjustment. I mean, when everyone,

medical professionals, relatives, relatives who are medical

professionals, tell you something you still have to look into it for

yourself. This was not easy for me to accept.

Take care and good night/morning/afternoon, Fay

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Something I forgot to mention concerning post RAI follow up: guidelines

in dealing with family (the toilet flushing, not sharing toothbrushes,

etc) - somewhat conclusive list as to exactly what and for how long.

Take care, Fay

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Something I forgot to mention concerning post RAI follow up: guidelines

in dealing with family (the toilet flushing, not sharing toothbrushes,

etc) - somewhat conclusive list as to exactly what and for how long.

Take care, Fay

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

In a message dated 10/1/2002 12:57:04 AM Eastern Daylight Time,

cfyoung2@... writes:

> 1. warnings - e.g. not to have RAI if TED is already present, with

> appropriate annotated statistics; to take a few weeks before having RAI

> to learn about GD.

Hi Fay,

This contraindication is clear....just wanted to point out that people that

DON'T have TED pre RAI take the same risk. The Bartalena study states that

RAI can TRIGGER or worsen TED. So you are right, every patient should be

given this very real information. Not only that, patients need to be told

by their doctors exactly what TED is, in detail, and shown pictures of

different levels of severity. Not a scare tactic, but a reality check.

On another board, a woman who saw my post RAI TED picture has decided not to

have RAI, even though she wants to. My mug has traumatized her and I am

sorry she feels THAT way (hey, it has traumatized me too! LOL!)! But in my

mind, a picture speaks a thousand words......

God bless,

[Guest guest]

In a message dated 10/1/2002 9:48:17 AM Central Daylight Time,

LISAREYNOLDS64@... writes:

>> 1. warnings - e.g. not to have RAI if TED is already present, with

>> appropriate annotated statistics; to take a few weeks before having RAI

>> to learn about GD.

> This contraindication is clear....just wanted to point out that people that

> DON'T have TED pre RAI take the same risk.

That is true. Before RAI, I had no eye symptoms. The endo did not mention

that RAI might cause eye disease. In fact when I asked him if anything else

might be damaged by RAI, he said " No " . The jerk flat out lied.

Three months after RAI, the tearing, pressure and irritation started. I

dismissed those as just an allergy, though I'd never had that type of allergy

before. After a few weeks the irritation became less bothersome though it

has never gone away. Nine months after RAI, double vision started. The

double vision is strange in that it isn't constant. It's present every

morning, but some days it clears up. It's worse just about every other day.

It seems to be the muscle dysfunction described in some of the literature.

I've been to 3 ophthalmologists, the last was a professor of ophthalmology

and neurosurgery who wanted to do radiation treatments and muscle alignment

surgery. Walking out of his clinic, I truly felt like I had just escaped

from Mengle. At this point, I'm going to a very good D.O., who at least

seems to follow the " First do no harm " idea in his practice.

I really appreciate this list. I am so amazed at all the regulars who have

such an abundance of stamina and patience to answer questions from so many.

I barely can get the messages read, much less write anything. Thanks so

much. You all do a wonderful job.

Bertta

RAI July 2000, Armour

[Guest guest]

In a message dated 10/1/2002 9:48:17 AM Central Daylight Time,

LISAREYNOLDS64@... writes:

>> 1. warnings - e.g. not to have RAI if TED is already present, with

>> appropriate annotated statistics; to take a few weeks before having RAI

>> to learn about GD.

> This contraindication is clear....just wanted to point out that people that

> DON'T have TED pre RAI take the same risk.

That is true. Before RAI, I had no eye symptoms. The endo did not mention

that RAI might cause eye disease. In fact when I asked him if anything else

might be damaged by RAI, he said " No " . The jerk flat out lied.

Three months after RAI, the tearing, pressure and irritation started. I

dismissed those as just an allergy, though I'd never had that type of allergy

before. After a few weeks the irritation became less bothersome though it

has never gone away. Nine months after RAI, double vision started. The

double vision is strange in that it isn't constant. It's present every

morning, but some days it clears up. It's worse just about every other day.

It seems to be the muscle dysfunction described in some of the literature.

I've been to 3 ophthalmologists, the last was a professor of ophthalmology

and neurosurgery who wanted to do radiation treatments and muscle alignment

surgery. Walking out of his clinic, I truly felt like I had just escaped

from Mengle. At this point, I'm going to a very good D.O., who at least

seems to follow the " First do no harm " idea in his practice.

I really appreciate this list. I am so amazed at all the regulars who have

such an abundance of stamina and patience to answer questions from so many.

I barely can get the messages read, much less write anything. Thanks so

much. You all do a wonderful job.

Bertta

RAI July 2000, Armour

[Guest guest]

In a message dated 10/1/2002 9:48:17 AM Central Daylight Time,

LISAREYNOLDS64@... writes:

>> 1. warnings - e.g. not to have RAI if TED is already present, with

>> appropriate annotated statistics; to take a few weeks before having RAI

>> to learn about GD.

> This contraindication is clear....just wanted to point out that people that

> DON'T have TED pre RAI take the same risk.

That is true. Before RAI, I had no eye symptoms. The endo did not mention

that RAI might cause eye disease. In fact when I asked him if anything else

might be damaged by RAI, he said " No " . The jerk flat out lied.

Three months after RAI, the tearing, pressure and irritation started. I

dismissed those as just an allergy, though I'd never had that type of allergy

before. After a few weeks the irritation became less bothersome though it

has never gone away. Nine months after RAI, double vision started. The

double vision is strange in that it isn't constant. It's present every

morning, but some days it clears up. It's worse just about every other day.

It seems to be the muscle dysfunction described in some of the literature.

I've been to 3 ophthalmologists, the last was a professor of ophthalmology

and neurosurgery who wanted to do radiation treatments and muscle alignment

surgery. Walking out of his clinic, I truly felt like I had just escaped

from Mengle. At this point, I'm going to a very good D.O., who at least

seems to follow the " First do no harm " idea in his practice.

I really appreciate this list. I am so amazed at all the regulars who have

such an abundance of stamina and patience to answer questions from so many.

I barely can get the messages read, much less write anything. Thanks so

much. You all do a wonderful job.

Bertta

RAI July 2000, Armour

[Guest guest]

Bertta,

I am so sorry for what you are going thru. I am in the same boat with you,

although I had mild TED symptoms pre RAI. I was lied to by my doctor as

well. I said to him, " Will this make my eyes better? " He said, " Maybe,

maybe not. " He sure never said, " It could make them worse. " You can read my

entire thyroid journey at :

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1

If you ever need to talk, I am here or you can email me personally. I know

how devastating this eye disease can be and I am here for ya!

God bless,

[Guest guest]

Hi Bertta,

As you might know, I'm writing a book on thryoid related eye disorders. Early

on, diplopia (double vision) only occurs intermittently in the mornings. But

if your eye disease is active, this will progress to constant diplopia.

You might want to asky your doctor about prisms added to your lenses or see

about orthoptics therapy or occlusion.

During the active phase of eye disease, glucocorticoids and orbital

radiotherapy are sometimes used to halt the disease process. For some people,

these help, but in general, the effects are the same as in people who have no

treatment since it's a self-limiting disease.

Anything you can do to help calm down your immune system will help resolve

the active disease, which can last anywhere from a few months to several

years.

It's unfortunate that your doctor didn't caution you about the eye

complications related to RAI. A doctor I interviewed last week mentioned that

the eye problems can develop as long as 20 years after RAI because of the

immune changes. Jody developed GO 6 years after RAI. At 12 years post RAI,

I'm watching my eye changes more closely.

You might want to read emedicine's info on diplopia if you have time. You can

find it at www.emedicine.com/oph/topic191.htm Take care, Elaine

[Guest guest]

Elaine,

I have just had what seems to be a recurrence of the eye disease. Had levels

run (T3,4) which the doctor's office did not feel free to share with me but I'm

pretty sure that the dry, gritty etc. eyes as well as the rapid pulse with

ectopics means that I've gone hyper for me or more antibodies have been

released. Its been two years since RAI. This is possible right? I'm going to

see a new endo in a week or so. Should I ask for a repeat on the antibodies and

the ANA?

And for the rest of you guys who have been talking about the wonders of

alternative medicine.......I've just begun seeing an acupuncturist and he is

amazing. I don't care if what he is treating is the after effects of toxic

shock or if its addressing some of the Graves' issues. I feel better than I have

since last May. I guess sometimes its time for a leap of faith. Thanks for

putting the idea out there.

Laurel

Re: Re: Welcome to rai

Hi Bertta,

As you might know, I'm writing a book on thryoid related eye disorders. Early

on, diplopia (double vision) only occurs intermittently in the mornings. But

if your eye disease is active, this will progress to constant diplopia.

You might want to asky your doctor about prisms added to your lenses or see

about orthoptics therapy or occlusion.

During the active phase of eye disease, glucocorticoids and orbital

radiotherapy are sometimes used to halt the disease process. For some people,

these help, but in general, the effects are the same as in people who have no

treatment since it's a self-limiting disease.

Anything you can do to help calm down your immune system will help resolve

the active disease, which can last anywhere from a few months to several

years.

It's unfortunate that your doctor didn't caution you about the eye

complications related to RAI. A doctor I interviewed last week mentioned that

the eye problems can develop as long as 20 years after RAI because of the

immune changes. Jody developed GO 6 years after RAI. At 12 years post RAI,

I'm watching my eye changes more closely.

You might want to read emedicine's info on diplopia if you have time. You can

find it at www.emedicine.com/oph/topic191.htm Take care, Elaine

[Guest guest]

Hi Bertta,

I see you are on Armour now for just over 2 years. After I had started with

Armour, which really helped me a lot, I began having to deal with the eye

disease full time also.

I suggest you get a TSI antibody test, if it comes back elevated, you may

want to go back to synthetic with a T3 taken 3/4 times a day. It is

suspected that Armour can raise our TSI antibodies, and from the

experimenting that my endo and I have been doing this past year, this was

true for me.

Since I have gone back to levothyroid and have added a T3 SR

and this is making a huge difference. My eye doctor couldn't believe the

improvements from my appointment in June to my appointment last Sept...even

after they had gotten so bad with the hypOhell I was in for most of the

summer.

Just a thought for you,

Jody

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi Bertta,

I see you are on Armour now for just over 2 years. After I had started with

Armour, which really helped me a lot, I began having to deal with the eye

disease full time also.

I suggest you get a TSI antibody test, if it comes back elevated, you may

want to go back to synthetic with a T3 taken 3/4 times a day. It is

suspected that Armour can raise our TSI antibodies, and from the

experimenting that my endo and I have been doing this past year, this was

true for me.

Since I have gone back to levothyroid and have added a T3 SR

and this is making a huge difference. My eye doctor couldn't believe the

improvements from my appointment in June to my appointment last Sept...even

after they had gotten so bad with the hypOhell I was in for most of the

summer.

Just a thought for you,

Jody

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi ,

> You can read my entire thyroid journey at :

> http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1

Your story is so heartbreaking, but your telling it is an inspiration.

Surely there are and will be many many people helped by hearing your story --

the truth. It is so sad that doctors can so callously take away a huge part

of our lives, seemly without another thought.

Thanks so much for being there and so willing to help.

Talk with you later,

Bertta

[Guest guest]

Hi ,

> You can read my entire thyroid journey at :

> http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1

Your story is so heartbreaking, but your telling it is an inspiration.

Surely there are and will be many many people helped by hearing your story --

the truth. It is so sad that doctors can so callously take away a huge part

of our lives, seemly without another thought.

Thanks so much for being there and so willing to help.

Talk with you later,

Bertta

[Guest guest]

Hi ,

> You can read my entire thyroid journey at :

> http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1

Your story is so heartbreaking, but your telling it is an inspiration.

Surely there are and will be many many people helped by hearing your story --

the truth. It is so sad that doctors can so callously take away a huge part

of our lives, seemly without another thought.

Thanks so much for being there and so willing to help.

Talk with you later,

Bertta

[Guest guest]

Hi Elaine

Thanks for the link to emedicine. It's one I hadn't found before, so there

will be some interesting reading.

I do use occlusion sometimes - scotch tape covering the inside of one lens of

sunglasses works well and isn't noticeable. Prisms wouldn't work well since

my double vision is really variable, all over the place. The images are

usually spaced quite far apart, so I do pretty well just living with. I can

read one image and ignore the other, watch just one of the TV's .

Is orthoptics therapy the same as the eye exercises?

I've had the diplopia for almost a year and a half now. It's been pretty

constant. Present every morning and resolving every other day for part of

the day. Chiropractic cervical manipulation improved it somewhat, making it

clear everyday for about 3 weeks. But the chiropractic got to be rather

expensive and the chiropractor didn't think it was going to solve the

problem, so I stopped. Also I got a little leery of having cervical

manipulation done. I tried acupuncture and it didn't do anything.

The D.O. I'm using now thinks metals are a possible trigger for Graves' and I

tested high in mercury and lead, so I have started chelation. The eyes are

doing better right now, but it's probably too soon to be sure. I'll post

something when I'm more sure of what's happening and how it turns out.

I'm looking forward to your new book. I have Graves' Disease, A Practical

Guide. It's great and it was what brought me to this list. Thank you for

all your doing for us.

Bertta

[Guest guest]

Hi Elaine

Thanks for the link to emedicine. It's one I hadn't found before, so there

will be some interesting reading.

I do use occlusion sometimes - scotch tape covering the inside of one lens of

sunglasses works well and isn't noticeable. Prisms wouldn't work well since

my double vision is really variable, all over the place. The images are

usually spaced quite far apart, so I do pretty well just living with. I can

read one image and ignore the other, watch just one of the TV's .

Is orthoptics therapy the same as the eye exercises?

I've had the diplopia for almost a year and a half now. It's been pretty

constant. Present every morning and resolving every other day for part of

the day. Chiropractic cervical manipulation improved it somewhat, making it

clear everyday for about 3 weeks. But the chiropractic got to be rather

expensive and the chiropractor didn't think it was going to solve the

problem, so I stopped. Also I got a little leery of having cervical

manipulation done. I tried acupuncture and it didn't do anything.

The D.O. I'm using now thinks metals are a possible trigger for Graves' and I

tested high in mercury and lead, so I have started chelation. The eyes are

doing better right now, but it's probably too soon to be sure. I'll post

something when I'm more sure of what's happening and how it turns out.

I'm looking forward to your new book. I have Graves' Disease, A Practical

Guide. It's great and it was what brought me to this list. Thank you for

all your doing for us.

Bertta

[Guest guest]

Hi Elaine

Thanks for the link to emedicine. It's one I hadn't found before, so there

will be some interesting reading.

I do use occlusion sometimes - scotch tape covering the inside of one lens of

sunglasses works well and isn't noticeable. Prisms wouldn't work well since

my double vision is really variable, all over the place. The images are

usually spaced quite far apart, so I do pretty well just living with. I can

read one image and ignore the other, watch just one of the TV's .

Is orthoptics therapy the same as the eye exercises?

I've had the diplopia for almost a year and a half now. It's been pretty

constant. Present every morning and resolving every other day for part of

the day. Chiropractic cervical manipulation improved it somewhat, making it

clear everyday for about 3 weeks. But the chiropractic got to be rather

expensive and the chiropractor didn't think it was going to solve the

problem, so I stopped. Also I got a little leery of having cervical

manipulation done. I tried acupuncture and it didn't do anything.

The D.O. I'm using now thinks metals are a possible trigger for Graves' and I

tested high in mercury and lead, so I have started chelation. The eyes are

doing better right now, but it's probably too soon to be sure. I'll post

something when I'm more sure of what's happening and how it turns out.

I'm looking forward to your new book. I have Graves' Disease, A Practical

Guide. It's great and it was what brought me to this list. Thank you for

all your doing for us.

Bertta

[Guest guest]

Hi Jody,

> I suggest you get a TSI antibody test, if it comes back elevated,

> you may want to go back to synthetic with a T3 taken 3/4 times

> a day.

That's something I'll try soon, but right now want to see if and how much the

treatment for mercury will improve the eyes. I never imagined Armour might

be a culprit, because it helped so much when I first started it. The first

hormone I started on was Levoxyl, and that was pure hell. Of course it

didn't help that my first endo had me hypo while on Levoxyl. But if Armour

is a problem, I'd sure rather have good eyes.

Thanks for the suggestion.

Bertta

[Guest guest]

Hi Jody,

> I suggest you get a TSI antibody test, if it comes back elevated,

> you may want to go back to synthetic with a T3 taken 3/4 times

> a day.

That's something I'll try soon, but right now want to see if and how much the

treatment for mercury will improve the eyes. I never imagined Armour might

be a culprit, because it helped so much when I first started it. The first

hormone I started on was Levoxyl, and that was pure hell. Of course it

didn't help that my first endo had me hypo while on Levoxyl. But if Armour

is a problem, I'd sure rather have good eyes.

Thanks for the suggestion.

Bertta

[Guest guest]

Hi Jody,

> I suggest you get a TSI antibody test, if it comes back elevated,

> you may want to go back to synthetic with a T3 taken 3/4 times

> a day.

That's something I'll try soon, but right now want to see if and how much the

treatment for mercury will improve the eyes. I never imagined Armour might

be a culprit, because it helped so much when I first started it. The first

hormone I started on was Levoxyl, and that was pure hell. Of course it

didn't help that my first endo had me hypo while on Levoxyl. But if Armour

is a problem, I'd sure rather have good eyes.

Thanks for the suggestion.

Bertta

[Guest guest]

Hi Bertta,

I still need to do some research on the orthoptics therapy but it sounds

similar to eye muscle exercises. I've met a lot of people whose GD was

triggered by mercury, often from eating canned fish. If it's not something

you can eliminate from diet, chelation is really the way to go. I used to see

a lot of high lead levels in people who did crafts, particularly making

stained-glass. And people doing pottery or working with lead-base paints. Out

of curiousity, were you working with any crafts? Good luck with your healing

process, Elaine

[Guest guest]

Hi Bertta,

I still need to do some research on the orthoptics therapy but it sounds

similar to eye muscle exercises. I've met a lot of people whose GD was

triggered by mercury, often from eating canned fish. If it's not something

you can eliminate from diet, chelation is really the way to go. I used to see

a lot of high lead levels in people who did crafts, particularly making

stained-glass. And people doing pottery or working with lead-base paints. Out

of curiousity, were you working with any crafts? Good luck with your healing

process, Elaine

[Guest guest]

Hi Bertta,

I still need to do some research on the orthoptics therapy but it sounds

similar to eye muscle exercises. I've met a lot of people whose GD was

triggered by mercury, often from eating canned fish. If it's not something

you can eliminate from diet, chelation is really the way to go. I used to see

a lot of high lead levels in people who did crafts, particularly making

stained-glass. And people doing pottery or working with lead-base paints. Out

of curiousity, were you working with any crafts? Good luck with your healing

process, Elaine