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#1 March 22, 2012 11:53:01

tau
Registered: 2012-03-22
Posts: 1
Profile  

Graves Opthalmopathy

Hi,
I am Brazilian and I've found this forum today.
My father was diagnosed with Graves ophthalmopathy 13 years ago.
He has never had changes in thyroid hormones, they are always at normal level.
His eyes passed by an active phase for 3 years and, after that , they stabilized with a huge proptosis.

Unfortunately, last year, on July, the eyes became active again leading to an increase of the proptosis, which caused chemosis.
He started a treatment with metilprednisolona (steroid) and underwent surgery on right eye (most injured), which improved his condition.
But 3 weeks ago the treatment with the steroid ended, and the disease is still active: his eyes get worse every day.
He can't use more steroids, otherwise it will attack others organs.
Are there other therapies?

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#2 March 22, 2012 20:02:10

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3489
Profile  

Graves Opthalmopathy

Welcome - and thanks for being a great advocate for your dad. I'm sorry to hear that he is going through this.

Unfortunately, there aren't a lot of good options for the active phase of TED. Steroid use is only a temporary fix, and it does come with risks.

The following web site has some good info; look on the right-hand side under “What is TED”, and you will find some info on the treatment options that are available.

(Note on links: if you click directly on the following links, you will need to use your browser's “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroideyedisease.org/ [thyroideyedisease.org]

Wishing you and your family all the best.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 March 23, 2012 05:49:40

gatorgirly
Registered: 2010-02-23
Posts: 319
Profile  

Graves Opthalmopathy

Melissa and others:

Ask your endocrinologist and neuro-ophthalmologist about selenium. It helped my TED a great deal after I completed a brutal round of steroids. It is found in Brazil nuts (which are high in fat) or can be taken via supplement. My endocrinologist knew the Italian researchers who conducted the most recent study of selenium's affect on TED, and he and my neuro-ophthalmologist fully supported me using it. I started with 200mcg a day, and am now down to 50mcg per day and have not needed steroids since I finished them in October.

My moderate TED developed in July 2011, and I am already told I could be a candidate for surgery in the next few months. I see my neuro-ophthalmologist at the end of April and will know more then but I haven't had pain, pressure or double vision since before the steroids. July 2011-now: I know this is much shorter than the normal “hot phase” so I wonder if the selenium helped speed the process along…? Don't take anything without informing your specialists (and your PCP, if you see one) about all your medications and conditions, but selenium is found in many foods anyway. It's just the extra “oomph” my eyes got from the supplements that seemed to make the difference.

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#4 March 26, 2012 14:44:29

gemini52
Registered: 2012-03-17
Posts: 3
Profile  

Graves Opthalmopathy

Thank you to those of you participating in this forum; I already consider you friends.

True to her word, my ophthalmologist put in a referral for me to see an endocrinologist. That appointment is scheduled for May 17th. In the last 2 years, I have used steroid bursts twice and found relief - but not lasting relief - from the upper and lower eyelid swelling. I will talk with the endo about this, as well as use of selenium - primarily to assist the lower eyelid/orbital area swelling. Also want to say to snelson, that, yes, the wording on my orbital CT scan was “unremarkable” vice “normal.” Ditto to whomever gave the thumbs up to frozen peas!

To belldandy112 (et al). I have the upper and lower lid swelling (primarily lower right eye at this time) but limited eye strain. I have no compression of the optic nerve, dry eyes, nor noticeable protrusion. Thyroid function is normal and CT scan “unremarkable.” I do have retracted upper eyelids which make my brows/brow bones seem especially noticeable. My eyelashes have all but disappeared.

It's quite maddening. More thanks to all of you.

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#5 April 8, 2012 19:03:02

phuffman39
Registered: 2012-03-24
Posts: 8
Profile  

Graves Opthalmopathy

I guess this might be a dumb question…but once your have TED and go through cycle of hot phase down to inactive, can you get it again?

































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#6 April 9, 2012 08:27:04

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3489
Profile  

Graves Opthalmopathy

Hello - Not a dumb question at all!

I saw one stat that noted that in 95% of cases, patients do *not* see a recurrence once the eye disease has run its course. The authors of the text speculated that for the 5% that did have a recurrence, having thyroid hormone levels go out of balance again (becoming either hypER or hypO) might have been a contributing factor.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

Edited Kimberly (April 9, 2012 08:27:46)

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