Downsides of RAI article

[Guest guest]

Hi folks...

I had about 25 people's emails to me stored in a mail folder in order to

research for my " Downsides of RAI " article that I " m about to start

working on.

Of course.

You guessed it.

My email program just blew up entirely, and I lost it all...all my

stored email, people's names, addresses, etc. for the past 3 years.

Part of that was these emails, so if any of you had emailed me to be

part of this article, and still would like to be, would you mind

emailing me again with your RAI/hyperthyroidism story?

Ever so grateful, even while I sob over my dreadful computer... ;-)

[Guest guest]

Hi,

I had RAI in 1996. I believe it was the biggest mistake I made also.

I wrote several weeks ago regarding TED. I am extremely grateful to you for

your info yesterday on the stages.

My eyes have gotten very bad. The solution the opthamologist my primary had

me see was having prisms put in my reading glasses. Since I see fine with my

glasses on (but reading for more than 30 minutes causes severe pain) and I

see double and blurred objects at arms length and beyond; this to me is an

empty and uncaring suggestion.

I have asked for a referral from my primary to see a doc who specializes in

Graves eye problems at Massachusetts Eye & Ear Infirmary in Boston ( I live

in a suburb close to there). Whether she agrees or not I am going. My

appointment is Nov.1

I do not take lightly my inability to read or use my computer for longer than

a half hour a day. It has had a devastating effect on my everyday life.

If you can bear with me a little longer I would like your input on something.

When my eyes really started to act up of course my doc sent me back to the

endo. She did a thyroid anti-body test to see if I had Graves (before my

thyroid was nuked to hell with 15 millicuries) The test was normal. My

original diagnosis did not include Graves. The endo at that time noted no

Graves on her exam of the scan nor did the nuclear medicine doc mention it to

me. It was diagnosed Toxic Multi-Nodular Goiter

At any rate this endo believes just because the thyroid anti-body test came

back normal; it does not rule out Graves. Is this correct? Also, if I did

not have Graves how could I have TED?

Thanks for any input you can provide. I also want to say my heart goes out

to you. I wept for you hearing about your pancreas. You are in my prayers.

Joyce

[Guest guest]

Hi Joyce,

Actually, TED isn't only seen in Graves' disease. It can run a course all on

it's own, and it can show up in other thyroid disorders. I'm not sure offhand

of the percentage, but I'm thinking it's as high as 30% of non-graves' people

that have TED. It can also be caused by the use of Lithium carbonate.

There are about 8 different thyroid antibodies and only 1 is specific for GD.

The others may or not be there. Even if your doc ordered the specific one,

the thyroid stimulating immunoglobulin or TSI (also called the stimulating

TSH receptor antibody) a negative result doesn't mean you don't have Graves'

disease. You could have been tested at a stage where your antibody levels are

low or your level could be too low to be detected. Some labs also run a TGI

test (thyroid growth immunoglobulins). These labs say nearly 100% of GD

patients witll have either TSI or TGI antibodies.

But whether or not your have GD, you sound as if you do have TED and methods

recommended to mellow out your immune system may be of benefit to you. Good

luck and let me know if you have more questions, Elaine

[Guest guest]

Hi Elaine,

Thank you so much for your response and information. I do have another

question if you don't mind. I did not know what you meant by " methods to

mellow out my immune system " . Would be very grateful if you know about and

could share these methods with me.

Thanks again for all your help.

Joyce

[Guest guest]

Hi Joyce,

By mellow out your immune system I meant modulate or balance it, which keeps

it strong but not over or underactive. You can read my article on

immunomodulators (supplements) on www.themestream.com by doing a search on

elaine moore. I also have some older articles on there about healing

autoimmune conditions holistically.

The cells and chemicals of your immune system are affected by your emotions,

stress levels, aging, exercise, diet, and environmental exposures. Pretty

much everything your eat, breathe and feel has an effect. Exercises like yoga

and tai chi are very beneficial, for instance. Overall, dietary changes,

stress reduction, and exercise are some of the best ways of mellowing your

immune system.

[Guest guest]

Dear Joyce -- Today is Nov. 4th & I am just reading your post of 10/19 where

you mentioned you had an appointment with an eye specialist on 11/01.

Please forgive me if you have posted since your visit and I didn't see

it in my e-mail, but I was wondering how you made out, what you found out,

what recommendations/options were given to you?

As far as your previous statement that this disease has been

" devastating " -- Oh, HOW TRUE!!!!!!

I consider myself fortunate to be in an area of the country where we

have really good specialists in this disease (Phila.). However, after seeing

two ophthalmologists who specialize in Graves' related eye disease, I realize

the doctors (at least the ones I have seen) are very knowledgeable at what

they do, but no one is there to treat the " whole patient " . Your use of the

word " devastating " is so true. They see only the disease and not beyond to

how the patient is limited, psychically (?) effected.

We are left to deal with impaired vision, strange-looking eyes, MAJOR

life-style adjustments on our own.

Please let me know how you made out, how you are coping, and what course

of treatment was recommended for you.

Thanks. Helen