TED

[Guest guest]

Helen.,

My thoughts are -- better to be safe than sorry. Be sure you find an

ophthalmologist who specialized in TED. If not, they won't know how to

treat. I have TED. It is a nightmare. Stay calm. I have noticed when I

am stressed, the symptoms are worse. I have it mild but, if this is mild I

would hate to see severe.

Bottom line.---got to the eye doc. Stay calm. I wish you luck. Please let

me know what you learn about TED. Please feel free to contact me at

temk@.... I am happy to compare notes with you.

k.

TED

>Can anyone explain what the very beginning of TED might be. I am

>experiencing red, watery, slightly irritated eyes with, yes, a slight,

>very slight feeling of irritation. Have Graves'; have been on

>Tapazole for about a week. Are these symptoms enough to go on to call

>my ophthalmologist or primary care m.d? Thanks. Helen

>

>

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[Guest guest]

Helen,

There is really nothing they can do for it except to mearsure increases in

size and tell you to use eye drops and an eye ointment at night for moisture.

My one eye ended up 1 millileter larger than the other one so I use dark

eyeliner to balance them out. I also have eyes that water and burn etc. and

it seems my allergies are doing that so there is an eye drop called Patenol,

RX and it works great for that...could be your problem too. Sheri Lynn

[Guest guest]

Dear Helen,

Depending on how ticked of you'd like to get either your MD or

Opthamologist, or how little information you may be willing to receive, I'd

opt for someone who specializes in thyroid disease only. I didn't know I had

TD when I started having TED symptoms, and I doubt anyone would have taken

these symptoms seriously then, as they didn't take any of my others

seriously. Even having been dx'ed (diagnosed) the MD's are very reluctant to

take seriously anything they didn't discover themselves. It seems they go to

extremes, either thay take everything too seriously and want X number of

test with many consults, or they belittle our concerns and take a wait and

see attitude. I've been on Tapazole, the first time, 2mg. for secveral

weeks till it put my into hypo, and the second time when dx'ed with GD, 60

mg. for many months till I started 's suppliments a month ago Now 20mg.

Years ago I started having " cramps " in the eyes, so badly I couldn't drive.

Nobody knew what I was talking about and wanted to do a hundred tests. For

years they itched and teared and everybody said I had allergies. Prior to dx

of GD my vision become so blurry I could not see the tv or drive without

corrected lenses. My eye doctor only stated " no difference in prescription "

and was not concerned, as I was. Later, around the time of dx I experienced

intense pain in the eyes, so much so I couldn't open them. Eye MD stated,

" Photosensitivity " which I remember having for years, but never with this

psin whether there was light ot no. Now, eyes tear, hurt, and get red and

sometimes puffy. I think that only someone who is intimately involved with

this disease can make a jugement call about your eyes, especially since we

all seem to experience different symptoms at differnt times and to a greater

or lesser extent. I guess I want to warn you to not be complacent, nor

overly concerned as complacency may allow something to evolve into something

bad, unnececesarily. Excessive self-concern can be the author of un-needed

ills. Love and Light, '

[Guest guest]

I have TED. True to your advise, the eye doc gave me drops and ointment at

night. I used it religiously. The tearing was great. I decided to stop

the ointment at night and decrease the drops to just a bed time. Well-- the

tearing has decreased. Any advise on this??? Does anyone have suggestions

for tearing???

Thank you,

K

Re: TED

>Helen,

> There is really nothing they can do for it except to mearsure increases in

>size and tell you to use eye drops and an eye ointment at night for

moisture.

>

>

>My one eye ended up 1 millileter larger than the other one so I use dark

>eyeliner to balance them out. I also have eyes that water and burn etc.

and

>it seems my allergies are doing that so there is an eye drop called

Patenol,

>RX and it works great for that...could be your problem too. Sheri Lynn

>

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[Guest guest]

Hi Eliza,

Right on. We could blame events from every aspect of our lives on Graves' IF

we were so inclined. The latest research says that, using ultra-sensitive

techniques like imaging studies, nearly all of us with GD have some degree of

eye involvement. However, clinically significant TED is only present in

10-25% of GD patients " if eyelid signs are excluded " and 30-45% of GD

patients " if eyelid changes are included. " Fewer than 5% of GD patients

experience severe ophthalmopathy. Then there are the two types of TED, one

caused by excess thyroid hormone which is a spastic type which causes

staring, etc. Symptoms decrease as thyroid function improves. The other, more

serious type, is the congestive infiltration caused by inflammation, buildup

of glycosaminoglycogan etc.

[Guest guest]

Hi,

I have not written in awhile but I checked my mail and would like to sahre

and ask questions.

In 96' I was diagnosed with Toxic-Multi-Nodular. No biopsy was done on the

cold nodules but I was put on PTU and a beta blocker for a few months (Had to

stop the beta blocker as it was causing more problems rather than helping..

did this despite doc's protests.) At any rate I had RAI in 96' and have never

felt good since. Had a bad reaction to the 15 millicuries was put back on

PTU and beta bloker and anti-inflammatory. I was hospitalized a week later

for signs of heart failure. Of course no one said it was because of RAI or

meds. The explanation was it was due to the previous many years of smoking

(had quit).

I never was diagnosed with being either hyper or hypo so the condition

floored me. I had eye symptoms for years which I always blamed on some sort

of allergy. Since RAI my eyes have gotten worse. My vision is double, my

eyes ache and become very irritated if I read or use the computer for more

than 15 minutes or so and I get a terrible headache. My lids are puffy

(improved since med reduced) and irritated.

My doc recently reduced my Levoxyl (I'm supoosedly hypo now) as my TSH went

to the basement when I stopped taking estrogen relacement two years ago.

Because it was still in the normal range .3 she never did anything about it

until my eyes became a real issue and other docs were involved. For two years

I have been a sweating, nervous wreck with insomnia and light headed. My

complaints went unheeded.

My new endo (referred by doc) did an thyroid anti-body which came back

normal. Here is my dilemma. She wrote me a letter explaining that even

though my test was normal, even though I was never diagnosed as having Graves

I could still have Graves and what she termed as Graves eyes? She claimed my

over medication had nothing to do with the problem. (I realize she is

covering the butt of my doc but I have had difficulty for years with my eyes

its just gotten much worse.) Is it possible I have or had Graves and what if

anything can I do to improve this terrible worsening eye problem. In the

letter the endo doc claimed the only recourse was having prisms placed in my

reading glasses. The problem is I cannot focus when I take off my glasses so

I see no help in this solution. The eye doc explained my condition as a

muscular condition which causes both eyes to move back and forth and the left

eye to also move up and down at will causing my inability to focus. Is this

and my other symptoms TED? Could the endo be correct in her diagnosis that I

could have Graves or had Graves? Gee whiz these docs confuse me.

Sorry my story is so long, and thanks for any input.

Joyce (MsSlipper)

[Guest guest]

Dear Joyce,

Maybe you should share your story at iThyroid.com, as many more people there

have experience with TED. Your story really makes me wonder--how many

patients had RAI and now have symptoms that their doctors attribute to

something else to cover their butts? This is a good example RAI not being

the " cure " doctors claim. You should be able to find lots of info at

iThyroid.com--I wish you the best of luck.

AntJoan

[Guest guest]

Hi Joyce,

Wow, you've been through a lot. It sounds like you originally had maybe

multinodular goiter or Graves' disease, both of which could cause

hyperthyroidism. I suspect your docs never did run antibody tests or bother

to find if you had both conditions. Was your nodular condition treated with

external radiation or did you have RAI-131, usually taken orally.

If it was RAI-131, it sounds as if you went into thyroid storm, which is a

definite side effect of RAI-131, causing your heart problems.

And RAI-131 could have exacerbated or worsened a pre-existing Gravesian eye

condition or induced it. TED isn't only seen in GD but also in Hashimoto's

thyroiditis, or it can be an independent condition with no eye involvement.

There are 5 or so different tests for thyroid antibodies. Some are only seen

in 50-70% of Graves' patients. Now that you have been treated, your antibody

levels could have declined. Most, but not all, TED patients have stimulating

TSH receptor antibodies or TSI.

Fluctuations in the amount of congestive infiltration which you have could

account for your inability to focus properly. I don't know if you can ever

prove what caused what or what condition you originally had, but you'd be

wise to find the best ophthalmologist around who specializes in Graves'

disease. There are many more options besides prisms. Steroids are used to

bring the inflammation down, and there are several surgical procedures in

use. Good luck and let us know what you decide to do and how it turns out.

Elaine

[Guest guest]

Hi Elaine,

Thank you for the information. Yes, I had I 131. I was given 15 millicuries

as my then doc told me she did not want the nodules to grow back.

I really don't know what my true condition was as I was very ignorant of the

subject at the time and extremey ill. I do know I had been having sysmptoms

of both hyper and hypothyroidism since my early twenties. I was always very

thin but my then old family doc said my hormones might be a little " off " due

to childbirth but would even themselves out later.

I had all sorts of difficulties such as palpitations, swelling of my legs and

feet, severe stomach aches and gastroenteritis attacks, insomnia, extreme

hyperactivity and what was termed anxiety attacks. I also had periods of

spastic energy and sometimes I was too tired to lift a spoon. All this was

attributed to my being a busy Mom of four. I am now 57. The " problem " was

not discovered until 96'. What a horrible waste of years. I had a

hysterectomy (uterus only) when I was 28 because of uncontrollable bleeding

(no diagnosis found). My left ovary became cystic and had to be removed in

90' and my left had atrophied because of the way the blood vessels were tied

off after hysterectomy.

I tell you this not for drama but to share with you so hopefully these

experiences do not follow anyone else for a lifetime. Thanks again for your

help.

Joyce

[Guest guest]

Joyce,

Your symptoms sound like you may have once had Hashitoxicosis along with the

nodular goiter. In Hashitoxicosis symptoms of hyperthyroidism occur in

patients who have hypothyroidism. Let us know what happens with your eyes.

[Guest guest]

Hi Elaine,

I'm curious about hashitoxcosis. This is the first time I've heard of it. I'm

hypo but I've been experiencing hyper symptoms. Could you suggest a place to

learn more about this?

Thanks so much,

Penny

(looking forward to your book. when will it be out?)

[Guest guest]

When I was writing my book, I had trouble finding lots of info. Here's one

passage from my book along with the reference, " Hashitoxicosis is a disorder

in which symptoms of thyrotoxicosis occur in patients with Hashimoto's

thyroiditis. In Hashitoxicosis, the stimulating TSH receptor antibodies seen

in Grave's disease are more likely to be present than the thyroid peroxidase

antibodies usually associated with Hashimoto's disease. The presence of

abundant lymphocytes and Askanazy cells in thyroid tissue confirms the

diagnosis in patients with characteristic symptoms. " The reference I used is

McClatchey, D, Editor, Clinical Laboratory Medicine, Baltimore, MD,

& Wilkins, 1994, 1618-1619. I also found some medline articles on

antibody interference from Hashitoxicosis, and all the lab reference books

(Quest, Mayo, Specialty Labs, etc.) refer to it when they list what thyroid

antibody tests are elevated.

You might try a search on Shomon's about com site or 's

iThyroid site. On the Graves_support@egroups board, we discussed

Hashitoxicosis about a year ago. , one of our friends from Canada,

mentioned knowing several people who had it. I think it's more common than we

think particularly in those of us who have had Graves' disease and moved into

hypothyroidism due to RAI. Our autoimmune process, never being allowed to

normally resolve, appears to get confused.

Just as many people with hypothyroidism are never even told if theirs is an

autoimmune disorder, many of us who are hypo are never mentioned about the

possibility of Hashitoxicosis. Let me know if you find anything good.

[Guest guest]

Hi,

Thank you so much for all the information. Thank all of you for being here.

Will let you know where this journey takes me.

Joyce

[Guest guest]

In a message dated 10/17/00 4:18:04 PM Central Daylight Time, hkenton@...

writes:

<< Subj: TED

Date: 10/17/00 4:18:04 PM Central Daylight Time

From: hkenton@...

Reply-to: hyperthyroidismegroups

hyperthyroidismegroups

Hi all. Am writing to ask if anyone can give me info. on the possible course

of Graves related ophthalmopathy and/or give me a source to check this out.

I saw an ophthalmologist at the Wills Eye Hsp. in Phila. yesterday. While

dictating a letter to my endo., he stated I was Class IV Graves

ophthalmopathy. 'Course, I would prefer to be Class I, but does anyone know

how many " Classes " there are?

I have exophthalmus, double vision, blurred vision. Pain, of course.

After all the necessary poking and prodding yesterday, I awoke this morning

feeling as though I had a tennis ball in my one eye. The M.D. said we could

consider surgery in eight months. For this surgery, how do they reach the

muscles behind your eye? ho! ho!

I'm afraid to speculate on that one!

I know this is not going to be over with shortly. Would like to have

more info. as to what one could possibly expect as this disease runs it

course.

I have heard all the horror stories about taping eyelids shut, multiple

surgeries, etc., but have other questions such as, how impaired can your

vision actually become, what do you do for the pain, can't they intervene

BEFORE your eye protrudes to the point the lids won't close??????

Also, my eye is protruding, but the lid is lowering. Would think it

would be just the opposite. Do people actually recover from this disease

and

have a return of normal vision? How long can this take? THANKS SO VERY

MUCH. Helen

>>

Helen, I'm sorry you have it. I have it mildly. How long did it take to

get to this class? thanks Kim

[Guest guest]

Hi Helen,

To assess our eye signs, physician use a system called No specs with class 0

being No symptoms and class 6 being Sight loss, usually from optic nerve

compression. Class 1 is Only signs, no symptoms (signs limited to upper lid

retraction, stare, lid lag)

Class 2 is Soft tissue involvement with periorbital edema, congestion or

redness of the conjunctiva and swelling of the conjunctiva (chemosis)

Class 3 is Proptosis . 22mm

Class 4 is Extraocular muscle involvement, most commonly the inferior rectus

with involvement impairing upward gaze.

Class 5 is Corneal involvement

I have a 30 page chapter on all this in my upcoming book which doesn't help

you now although I have lots of info lying around. In general though class 4

means your muscles have gotten displaced and the fibers stretched from

congestive infiltration. You have an inflammatory substance consisting of

white blood cells and a compound known as glycosaminoglycogan (GAG) which are

taking up room and affecting your muscle. The normal range of extraocular

muscle is 3.0 to 6.8 ml, and of retrobulbar fat and connective tissue from

8.2 to 14.0 ml. In patients with GO, muscle volume has been reported to be as

high as 21.6 ml; fat and connective tissue volume as high as 22.6 ml have

been reported.

The extraocular muscles originate at Zinn's annulus, which is the fibrous

extension located at the back of the orbit that forms the posterior

attachment site of the muscles. The visual axis and the axis of the orbit are

not precisely parallel. Consequently, the superior rectus muscle elevate and

rotate the eyes inwardly while the inferior rector muscles lower and

outwardly rotate the eyes.

The extraocular muscles are encased by fibrous connective tissue that

separates the intraconal compartment from the extraconal space.

Anyway, there's a specific protocol for surgery. Orbital decompression is the

standar surgical approach for GO and is usually performed first, followed by

extraocular muscle surgery (or correction of double vision if indicated)

which is, in turn, followed by eyelid surgery if indicated.

Helen, hopefully and some of the other people who have had surgery can

help with your questions too.

[Guest guest]

Kim, when you say " mild " , what do you define as mild? I never noticed a

thing until I started with the double vision and blurred vision. That was

only two months ago. How could this have progressed so fast?

What symptoms do you have? (When you say mild?) Do you have double

vision, etc?

Thanks for the reply. Do you mind if I ask where in the country you

live? Helen

[Guest guest]

Thank you so much for your thoughtful and comprehensive reply. I am

certainly much more informed than before you answered my query.

I am hesitant to ask and take more of your time--you have been so kind

and thoughtful. Is there an easy answer for why they check your color vision

and why this is important? Optic nerve involvement?????

Pleeeeeeeze, no hurry at all here. You must get tons of e-mail. Thank

you again. Helen

[Guest guest]

Hi Helen,

Yes, loss of color vision is an indication that the optic nerve might be

compressed. I read somewhere that the color red is the first color lost. On

one board someone mentioned using a red coke can as an indicator.

Since the eye involvement runs its own autoimmune course, anything you can do

to balance (not stimulate) your immune system is likely to help you. You

might want to read my article on immunomodulators on www.themestream.com

just do a search for elaine moore.

[Guest guest]

Please give me symptoms of TED. I don't have bulging eyes, but I've begun

to experience some visual problems and swelling of my lids which may just be

the result of getting older and allergies. I KNOW I should be able to get

this information from 's site, but I get " balled up " when I go in and

just get frustrated. Thanks for your help!

=====

Bonner

[Guest guest]

Kim, I am so far behind with my e-mail, my head seems to be spinning. I am

not sure I answered your question back around the 18th or so of the month.

You inquired as to how long it took me to progress to Stage lV of TED. You

said you had it " mildly " . If you sent me a reply in the meantime, I

apologize. Gosh, I don't know what happened. I didn't have any symptoms

at all that I could recognize until all of a sudden last August I started

with blurred and double vision. No inflammation, tearing. Either I was

extremely obtuse, or just plain stupid? I mean, how could one miss the

beginning symptoms. But I swear, they were not there to any great extent!!

When you say you have it mildly, what are your symptoms and do they

interfere with your vision and the way you function?

This problem can be so depressing.

Thanks. Helen

[Guest guest]

Hi Marilyn,

I'm cutting in a bit here, but I wanted to ask you how long you were on ATDs

and vitamins before you stopped taking the Carbimazole? I think you (like

me) are impatient for change, but unfortunately treatment of this disease

just doesn't work quickly.

Maybe you know all this already, but I think I remember you from a couple of

weeks ago and was it only weeks you gave yourself before you came off your

ATDs. Maybe I'm wrong but I think this is worth bringing up again for

everyone.

I too was getting really frustrated about the lack of change (still am) but

it helps me to understand (ELAINE PLEASE CORRECT ME IF I'M WRONG:) the delay

comes from the fact that the pills, and even the vitamins (?) can only

effect the FT4; the FT3 which is the one which makes you feel the way you

do, the one that is in your blood already, that FT3 just has to get used up

before you start feeling better. The ATDs effectively cut off the supply of

iodine and so your FT4 will show a change FIRST and then your FT3 will drop.

I'm hoping that's all true anyway!

Hey... has anyone got any benefit from going to natural mineral hot pools -

I wondered if they would help replace lost minerals through the skin? There

aren't any near me, but they sound like a good idea to me (even if they

don't make any difference to HyperT!!!!!)

DAWN

>From: " Jocelyn Yap " <joy86@...>

>Reply-hyperthyroidismegroups

><hyperthyroidismegroups>

>Subject: TED

>Date: Sun, 10 Dec 2000 22:21:56 +0800

>

>Hi Mona,

>

>Thank you for your concern. I have many questions regarding the thyroid eye

>disease and this is my worst fear if I were to develop this problem. So

>here

>are some of my questions.

>

>Do all HyperTs result in TED? At what point (T4 or T3 level) would the

>pressure behind the eyes develop? If we're on ATDs will TED still develop

>after several years? If the eyes bulge is this irreversible or can it

>return

>back to its former beauty once we go into remission?

>

>I stopped my carbimazole for about a week, but continued with my vitamins

>and minerals, just to see if there is any change in my blood test and in

>my

>symptoms. However, my heart rate started to rise up to 90, so that gives

>me

>a good indication as to where I am now, tomorrow I'll have my blood test

>for

>confirmation and then it's back to ATD once again. I keep on looking at my

>eyes to see if there is any change... will puffy lids be an indication of

>TED?

>

>I hope I don't bother you much with all my questions...

>

>

>Marilyn

>

>

>

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[Guest guest]

Hi Marilyn, apparently most of us have some eye involvement but some

symptoms are noticed more than others. Only a very small percentage have

serious problems. The most important thing to do is to get your thyroid

levels stabilized. Don't expect overnight results.....it takes time. I've

been on PTU for four years and finally going into remission.

Each individual is different. Eye problems develop at different T3/T4

levels. I may be more comfortable at a lower level than you, it depends on

your body. TED can develop anytime!

My eyes bulged slightly and returned to normal. I think it depends on how

much the muscles are involved. Puffiness, dryness, tenderness (putting on

eye shadow was painful for me at one time), light sensitivity, moving the

eyeballs left to right, up or down, eyelid retraction or lid lag, headaches,

weird feelings around the eyes, eye pressure from behind the eyes, lid

twitching, vision changes. These are all symptoms. You can get one or some

or all or nothing.

If you've just started taking ATDs, you should give your body time to

adjust. Don't worry about your eyes, you'll only stress yourself out like I

did. Do what it takes to destress yourself; meditate, pray, yoga, soak in a

tub, etc. I'm a worrywart so I can understand your concerns. By the way

you can never ask too many questions. I'm not an expert at any of this but

I've experienced enough to share some information. I go to or Elaine

or one or two others who are the experts on medical and nutritional aspects.

Take care of yourself and keep asking questions....Mona

TED

Hi Mona,

Thank you for your concern. I have many questions regarding the thyroid eye

disease and this is my worst fear if I were to develop this problem. So here

are some of my questions.

Do all HyperTs result in TED? At what point (T4 or T3 level) would the

pressure behind the eyes develop? If we're on ATDs will TED still develop

after several years? If the eyes bulge is this irreversible or can it return

back to its former beauty once we go into remission?

I stopped my carbimazole for about a week, but continued with my vitamins

and minerals, just to see if there is any change in my blood test and in my

symptoms. However, my heart rate started to rise up to 90, so that gives me

a good indication as to where I am now, tomorrow I'll have my blood test for

confirmation and then it's back to ATD once again. I keep on looking at my

eyes to see if there is any change... will puffy lids be an indication of

TED?

I hope I don't bother you much with all my questions...

Marilyn

[Guest guest]

Hi Mona,

I'm very happy to hear that you're going into remission. It's a cause for

celebration!!!

When I saw my T4 to be very much lower than what I've expected, I became a

bit shocked and absent minded, I couldn't believe it. I know that I'm not

well yet, but if I succeeded in lowering the T4, I think I can adjust it up

again slightly to a more normal level, and I HOPE remain there..for good...

he-he. Anyway, thank you so much for the info on the eyes, I know I'll have

more questions coming your way if ever I overshoot my target. I've

experienced the eye involvement but it just disappeared after a while though

am not so sure if in the future I'll experience it again.

GOODLUCK and MAY GOD BLESS US ALL!

marilyn

[Guest guest]

Marilyn, I think it's common for most folks to have some symptoms of TED.

However, there is a small percentage that become serious. TED can worsen at

any time but I've been told chances are you won't get much worse if you

haven't already....just need to keep the thyroid levels stable!

Also it has been proven that RAI can worsen the TED, that is the primary

reason I never had RAI....thank goodness because now I'm in remission.

Someone posted on this BB they didn't like the term remission but preferred

" healed " or " cured " . I agree, I'd like to think I've recovered completely

from this problem!! Take care of yourself, and please continue to ask

questions, Mona

Re: TED

Hi Mona,

I'm very happy to hear that you're going into remission. It's a cause for

celebration!!!

When I saw my T4 to be very much lower than what I've expected, I became a

bit shocked and absent minded, I couldn't believe it. I know that I'm not

well yet, but if I succeeded in lowering the T4, I think I can adjust it up

again slightly to a more normal level, and I HOPE remain there..for good...

he-he. Anyway, thank you so much for the info on the eyes, I know I'll have

more questions coming your way if ever I overshoot my target. I've

experienced the eye involvement but it just disappeared after a while though

am not so sure if in the future I'll experience it again.

GOODLUCK and MAY GOD BLESS US ALL!

marilyn

[Guest guest]

Hi Arlene,

Thanks for the update and glad to hear things are finally starting to come around. It would help if your doc would test you for thyroid antibodies to see if you have Hashitoxicosis, which is characterized by both hypothyroidism and hyperthyroidism. Quite a few people move from GD into Hashitoxicosis. You'll find my article on Hashitoxicosis on suite 101. Take care, Elaine