[Anonymous July 1, 1998 at 9:31 pm Post count: 93172]

#1149132

Hi Debby

WOW, I really enjoyed reading your posting! Thanks for doing it for our benefit!

[Anonymous July 1, 1998 at 9:49 pm Post count: 93172]

#1050385

Hi, everyone!

The question of Graves’ disease and Graves’ ophthalmopathy *possibly*
being two separate diseases has caught my attention before. Everything
that I’ve read over the past years seems to show a direct association
between the two conditions, leading me to consider Joanne’s thought of
“same disease, two routes.” We all get on the “Graves’ disease train,”
maybe make some stops (remission) along the way, and possibly have to
change cars enroute (symptoms progress to include eyes, thyroid, skin,
whatever) to get to our final destination (wellness). Even though some of
us took longer to get there, because of stops and route changes, we all end
up at the same station in the end. It’s a silly analogy, but it helps me
visualize the idea of Graves’ disease encompassing both conditions – and
in fact all the symptoms.

To answer this question for myself, I dug through my bookmarks last night
and copied pertinent quotes from the websites that discuss this unsolved
controversy. I also emailed my ophthalmologist from Mayo Clinic and asked
him two questions: Are there different antibodies that affect the thyroid and
the eyes? Are Graves’ disease and Graves’ Ophthalmopathy two separate
diseases? The following is his response and the quotes that I have collected.
Add this info to Bobbi’s quote from Dr. Wall for today’s food for thought.

In my opinion, this subject remains a mystery. To be fair and to represent
us Graves’ disease warriors as a whole, our national spokesperson better include
ALL aspects of the disease!

Wishing you all health and happiness, Debby
(Sorry this post is so long)

Mayo Clinic ophthalmologist specializing in Graves’ disease:
“The entire subject of antibodies is controversial and I don’t think it
is settled by any means. There are a bunch of antibodies detected – the
real question is what is the target? The other question (Is Graves’
Ophthalmopathy a separate disease?) is also quite controversial. Since
most people get the eyes and the thyroid at the same time, it is thought
to be different expressions of the same process. But then how can one
explain the people that get the thyroid and then many years later get
the eyes or vice versa? No easy answer here either.”

***http://www.mayo.edu/Mayo_Ophtho/Graves_info.html
***http://www.mayohealth.org/ivi/mayo/pted/htm/graves.htm
“In Graves’ disease the immune system mistakenly attacks the thyroid gland,
eyes, and skin of the lower legs, causing symptoms of the disease. . .
When Graves’ disease affects the eyes it is called Graves’ Ophthalmopathy.”

***http://www.ngdf.org/faq.htm
“The leading cause of hyperthyroidism, Graves’ disease represents a basic
defect in the immune system, causing production of immunoglobulins
(antibodies) which stimulate and attack the thyroid gland, causing growth
of the gland and overproduction of thyroid hormone. Similar antibodies
may also attack the tissues in the eye muscles and in the pretibial skin
(the skin on the front of the lower leg). “

***http://home1.pacific.net.sg/~choco/tnh.htm
“The relationship between activity of thyroid disease and TAO is poorly
understood. Eye disease may progress despite good control of hormonal
levels. Management is even more frustrating because the underlying
autoimmune process cannot be directly treated.”

***http://www.thyrolink.com/thyint/3-97/3-97int.htm
“Graves’ ophthalmopathy (GO) or thyroid-associated ophthalmopathy (TAO)
is one of the remaining enigmas in thyroidology, for the basic scientist
as well as for the clinician. For, its immunopathogenesis is incompletely
understood and its management can be rather difficult. . .

GO is usually but not invariably associated with Graves’ hyperthyroidism…
it has been argued that the vast majority if not all patients with
Graves’ hyperthyroidism also have GO. . .

Graves’ hyperthyroidism and GO are closely related disorders, and the
epidemiological data strongly suggest that the two belong to the same
disease entity. It thus comes natural to look for an antigen that is shared
between the thyroid and the orbit.”

***http://www.rnib.org.uk/info/eyeimpoi/thyroid.htm
“Thyroid Eye Disease is also known as TED, Dysthyroid Ophthalmopathy,
Basedow’s Disease, Endocrine Exophthalmos or Ephthalmopathy, Graves’
Disease, Thyrotoxic or Thyrotrophic Exophthalmos. . .

The thyroid gland lies in the neck in front of the windpipe and helps to
maintain normal body metabolism. Association between disease of the
thyroid gland and exophthalmos, an abnormal protrusion or bulging
forward of the eye, has been recognized for over a century but although
easily recognised the pathology is still unclear.”

***http://www.endocrineweb.com/hyper2.html
“There are actually three distinct parts of Graves’ disease: [1] overactivity
of the thyroid gland (hyperthyroidism), [2] inflammation of the tissues
around the eyes causing swelling, and [3] thickening of the skin over the
lower legs (pretibial myxedema). Most patients with Graves’ disease,
however, have no obvious eye involvement. Their eyes may feel irritated or
they may look like they are staring. About one out of 20 people with
Graves’ disease will suffer more severe eye problems, which can include
bulging of the eyes, severe inflammation, double vision, or blurred vision.
If these serious problems are not recognized and treated, they can
permanently damage the eyes and even cause blindness. Thyroid and eye
involvement in Graves’ disease generally run a parallel course, with eye
problems resolving slowly after hyperthyroidism is controlled.”

***http://brasil.silverplatter.com/physicians/digest/abstract/abst228.htm
“Summary: The two main characteristics of Graves’ disease are
hyperthyroidism with ophthalmopathy. It is a subject of debate as to
whether treatment of the raised thyroxine levels leads to a worsening of
the eye disease. This phenomenon that has been reported in particular
after treatment with radioactive iodine. This prospective, randomized
trial from Italy compares the effects of two different treatments for
Graves’ disease on the associated ophthalmopathy and also investigates
the effects of additional glucocorticoid therapy. . .

The results suggest that development or progression of ophthalmopathy
does occur five times as frequently after treatment with radioiodine
when compared to methimazole therapy alone. However, these eye
problems will occur in less than a fifth of patients, they will
spontaneously regress in two thirds, and can be abolished by a 3-month
course of oral prednisone following the radioiodine treatment. Treatment
with glucocorticoids also resulted in a significant improvement of
pre-existing eye disease. Prophylactic glucocorticoids should therefore
be considered in patients in whom radioiodine treatment is planned.”

***http://www.bcm.tmc.edu/oto/grand/51393.html
“Although the frequency of ophthalmopathy related to thyroid disease is
difficult to estimate, 80% of those patients with bilateral exophthalmos
will have Graves’ disease. The eye findings associated with Graves’
disease can occur before, during, or long after the thyroid disease has
been discovered or treated. While the orbitopathy is most commonly
associated with hyperthyroid states, it can be seen in both euthyroid and
even hypothyroid patients. Graves’ ophthalmopathy, or endocrine
ophthalmopathy is an immunologically-mediated inflammatory process
associated with one of three thyroid disorders: 1) Graves’ hyperthyroidism
(80%); 2) Hashimoto’s thyroiditis (10% to 15%); or 3) unclassified thyroid
immunologic abnormality (5%). The link between thyroid disease and the
orbital pathology involves both humoral and cellular immune reactions.
However, the exact mechanism remains unknown.”

***http://cpmcnet.columbia.edu/dept/thyroid/EyediseaseHP.html
“Graves’ disease and the associated eye changes (Graves’ orbitopathy)
are perplexing to the affected patient. The eye symptoms usually occur
at the same time as thyroid disease, however they may precede or
follow the obvious symptoms of the thyroid abnormality. Most patients
with thyroid abnormalities will never be affected by eye disease and
some patients only mildly so. Although the incidence of eye disease
associated with thyroid dysfunction is higher and more severe in smokers,
there is no way to predict which thyroid patients will be affected. In
addition, while eye disease may be brought on by thyroid dysfunction,
successful treatment of the thyroid gland does not guarantee that the
eye disease will improve as well, and no particular thyroid treatment
can minimize the chances that the eyes will deteriorate. Once inflamed,
the eye disease may remain active from several months to as long as
three years. Subsequently, there may be a gradual or, in some cases, a
complete improvement. While rare, reccurrence of the eye disease is
not unknown and may coincide with inadequate control of thyroid
hormone levels.”

***http://the-thyroid-society.org/faq/35.html
“The eye changes associated with Graves’ disease can be called either
Graves’ ophthalmopathy, Graves’ orbitopathy, or Graves’ eye disease.
Approximately 50% of the patients with Graves’ disease develop some
eye disease, but the eye changes may be so subtle that patients are
unaware of them. For most patients with Graves’ disease, eye involvement
is minimal. Severe orbitopathy occurs in less than 5% of patients with
Graves’ disease. . .

Graves’ eye disease is not caused by thyroid dysfunction. Graves’ disease
is an autoimmune disease that affects the eyes and the thyroid gland
independently of each other. Thus, the hyperthyroidism may improve
with therapy, while the eye disease stays the same or gets worse.
Even though the thyroid disease and the eye disease run independent
courses, it is important to treat the hyperthyroidism associated with
Graves’ disease.”

***http://www.the-thyroid-society.org/med_letter5.html
“In 1835 Robert Graves, a British physician, described signs of thyroid
disease including exophthalmos (forward protrusion of the eyes), and his
name has become an eponym for an eye condition associated with thyroid
dysfunction. Although most frequently associated with hyperthyroidism,
this eye condition (Grave’s ophthalmopathy) can occur in patients with
no laboratory evidence of thyroid dysfunction. . .

The onset and clinical course of Grave’s eye disease does not usually
parallel that of systemic thyroid disease. Most thyroid patients will
never be affected by the eye disease, and if so, only mildly so.
Unfortunately, no test is available to predict which patients will be
affected. It has however been noted that the eye disease develops more
frequently and is more severe among women who smoke. While the eye
condition and the thyroid dysfunction are part of the same disease,
successful treatment of the thyroid gland does not guarantee that the
eyes will improve. No mode of thyroid treatment minimizes the chance
that the eyes will become involved. Once inflamed, the eye disease may
remain active for several months to as long as three years, after which
time there may be partial or complete improvement. After Grave’s
ophthalmopathy has become inactive for six months, recurrence of eye
disease is infrequent and may coincide with poor control of thyroid
hormone levels.”

***http://www.thyroid.org/patient/brochur3.htm
“Graves’ disease is the only kind of hyperthyroidism that is associated
with inflammation of the eyes, swelling of the tissues around the eyes,
and protrusion of the eyes. We do not know the cause of these problems. . .

Although many patients with Graves’ disease experience redness and
irritation of the eyes in the course of their disease, less than 1 percent
ever develop enough inflammation of the eye tissues to cause serious or
permanent trouble. The severity is not related to the degree of thyroid
hormone abnormality.”

***http://home.ican.net/~thyroid/Guides/HG06.html
“About 50% of patients also have significant eye signs (Ophthalmopathy).
The eyes, which bulge from their sockets are red and watery and the lids
are swollen. Quite often the eyes do not move normally because the swollen
eye muscles are unable to work precisely. The remaining 50% of patients
with Graves’ hyperthyroidism may have slightly bulging eyes because of
spasm of the muscle of the lids, giving them a staring appearance.”

***http://www.wvhealth.wvu.edu/Eye/thyroid.htm
“Thyroid-related problems, usually called Graves’ disease, are
unpredictable in their development and can progress despite successful
control of the thyroid problems. Overall, about 70% of people with
thyroid disease have some sort of eye trouble. Most develop the eye
disease within a year of developing thyroid disease. In some patients,
however, the eye changes may not appear until much later, after the
thyroid problem has been treated and controlled. Rarely, eye problems
can occur in patients who seem to have completely normal thyroid
glands, a condition known as ‘euthyroid Graves’ disease.'”

***http://www.healthanswers.com/database/ami/converted/000358.html
“Graves’ disease is one of most common causes of hyperthyroidism.
The production of thyroid hormone is increased resulting in an enlarged
thyroid gland and many changes within the body. The cause of the
disease is unknown but may be related to a genetic or immune system
disorder. Other disorders of the endocrine system may be present in
people with Graves’ disease. The symptoms of hyperthyroidism are
present and, in addition, the eyeballs may protrude (exophthalmos)
causing irritation and tearing.”

***http://www.healthtouch.com/level1/leaflets/tfa/tfa002.htm
“Associated with Graves’ disease in many cases is eyelid retraction,
making your eyes appear larger. About 5% of patients experience
more serious eye problems, in which the tissue around and behind
the eyes becomes inflamed and swollen. This may make your eyes
protrude, and it may be difficult to close them completely at night.
Rarely, there may be problems with double vision or diminished vision.”

[Anonymous July 2, 1998 at 1:50 am Post count: 93172]

#1149133

WOW – thanks so much Debby. Just got home from a Canada Day outing and decided to check the BB before watching the fireworks display from our balcony. You have been busy today. I printed your post and it just kept on printing and printing and…. I will add it to my file of informative posts from you and Bobbi. Boy, if any of my friends or family get this Graves disease I can certainly hand over an interesting file.

I did know from the beginning that there were many different symptoms of Graves disease and that successful treatment of the thyroid gland did not guarantee that my eyes would improve. My Endo who is associated with the Thyroid Foundation of Canada and my Ophthalmologist who is world renowned both told me I had Graves Disease and that my Endo would be treating me monitoring my levels and my Ophthalmologist would be looking after the eye problems. My Ophthalmologist told me right up front that the treatment of my eyes had nothing to do with how my Endo was monitoring me. They both work together and I often see them the same day because I have Graves Disease. That is why when I read “People Need to realize, graves ophthalmology is a separate disease from graves disease itself”, when I had previously posted I felt that any spokesperson should include information about eye symptoms and what can happen in any articles that are printed, I felt I had to clarify for newcomers that the two came under the same heading of Graves Disease in the NGDF – FAQ. My main concern was and is that the eye symptoms be recognized in any articles printed about this debilitating disease. It now turns out that it was a good thing this issue came up. We have all received a lot of informative information from you Debby, Thanks again.

Now I’m going to watch our fireworks. Most of you guys have to wait until next Saturday night – but enjoy. SAS

[Anonymous July 2, 1998 at 4:26 pm Post count: 93172]

#1149134

I have been diagnosed with thyroid eye disorder as of March. My vision is blurred and I no longer can drive. Underwent steroid (Predisone) & 10 days radiation to eyes. Vision still blurred. Leaving for Ireland August 1. Any hope that it might clear up?? Doctors don’t tell you much.

[Anonymous July 2, 1998 at 5:13 pm Post count: 93172]

#1149135

Joan,
I was diagosed with Graves eye disease in April. I did a month of
prednisone and had some relief until I stopped. Am back on prednisone
until I see the radiologist next Wednesday. I am ready for the
next step. Being new to BB it is nice to hear from others who
are going through like experiences. I have found it very interesting
to read about all the different symptoms. For 10 years I had just
accepted my Graves until it affected my eyes and then I decided
to start checking on the whole disease. It has been very
good learning process. I just wish I had started sooner.
Good luck.

Machell

[Anonymous July 2, 1998 at 11:54 pm Post count: 93172]

#1149136

To Machell:
Thanks for your reply. The predisone is driving me up the walls. It didn’t help clear up blurred vision – Dr. has reduced from 60 mg daily to 30 as of tomorrow. Also on PTU. Little sleep. Eyes are bulging now, so I will know July 8 when I see Dr. what happens next. Appreciate your input.
Joan

[Anonymous July 3, 1998 at 5:55 pm Post count: 93172]

#1149137

Well Done there Debbie I enjoyed reading that post–thank-you
little warrior Barb
have a good weekend
also if anyone who sees this and has had the mold made for the radiation treatments will you post or e-mail me and let me know what exactly they do,thanks

[Anonymous October 18, 1998 at 8:22 pm Post count: 93172]

#1149138

I would appreciate the names of any doctors on Long Island, New York or New York City who primarily focus on the treatment of Graves’ Disease.
You can either email me or post the name(s) here.
Thanks in advance.

[Anonymous October 19, 1998 at 3:55 pm Post count: 93172]

#1149139

Well, I just read the personal accounts on Diane’s home page. I was diagnosed with Graves’ 3 days ago, after trying to figure out what was wrong with me for the past 3 and 1/2 years. I’m more depressed now, after reading these personal accounts then I was when I first heard this news (actually I was relieved to hear it was Graves’ and not something awful). Maybe I’m naive, but I thought you had the Radiation or Surgery, were given and pill and went off on your merry way?? I think I’d just be better off to deal with the symptoms I have and forget the treatment options, they don’t sound like they work anyway. I’m really frustrated now…..

[Anonymous October 19, 1998 at 4:04 pm Post count: 93172]

#1149140

Amanda,

That is what we are here for. To provide support. Knowledge is power.
The folks on DC’s page were the folks who had a hard time (like me). It
is intended to show you that life goes on and it is good. No matter what
goes wrong we get through it with help from our friends.

Glad you found the page and our BB. Welcome and feel free to ask any questions
we are here for you and all others.

Jake
On-line facilitator
National Graves Disease Foundation

[Anonymous October 19, 1998 at 4:13 pm Post count: 93172]

#1149141

Dear Amanda:>}
Hi there and welcome to the BB. Trust me give it time it’s not all negative,or at least I have heard some story’s that are not too bad,but hey you have it,and your here so give us a chance.
Mind you I can’t say too many good things about it either to be honest but there is alot worse then :graves: that you could have instead.I think if you get yourself some good doctors and keep ahead of this disease then you should be alright,but it’s when you are having troubles with the doctors and your graves is very serious that you have problems ,so Amanda,if I were you I would get myself to an eye doctor right away and just make sure they know what they are talking about because you only get one pair of eyes,and thats if you even have the eye trouble,but goods luck to you and remember we care! Barb

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