[Anonymous]

#1147407

Nancy,
This is my understanding of it. Graves Eye Disease can be by itself, in that one does not have the thyroid Graves. This is what Jake & Jan have said many times, along with many doctors. You can have both, or you can have either, or. You don’t necessarily get the eye problems with the thyroid, nor the thyroid problems with the eyes. Each disease is seperate in itself. (I am lucky (?), I have both!
I hope this helps. Her eyes have Graves, but her thyroid is ok. ok?
Ellie

[Anonymous]

#1049643

My sister has protruding eyes. Her eye doctor suspected Graves’ disease and sent her to her GP, who did thyroid blood tests. Came back normal. Now they are talking about non-thyroid-related Graves’ Disease, and she is having a CAT scan next week.

In my searches on the Web, I’ve found lots of information on Graves’ Disease, but it always refers to it as a form of hyperthyroidism. Anyone know anything about non-thyroid-related Graves’ Disease?

I’d appreciate any info.

[Anonymous]

#1147408

Hi, Nancy:

It is possible to have the eye disease without the thyroid being affected. In the past the eye disease was known as “Graves’ Ophthamopathy”, but recently the medical establishment has started calling it “Thyroid Associated Ophthamopathy”, because they do see it in people other than Graves’ patients, even apparently HYPOthyroid people. As researchers provide more and more information about something sometimes they find that their first assumptions were not totally correct. Anyway,. I would recommend that you find your way to the Mayo Clinic web site, because they have some good information on the eye disease. I’m sorry, but I lost that address when my computer went down, so I cannot give it to you.

Wishing you luck,
Bobbi

[Anonymous]

#1147409

I have had Graves’ Disease for 7 years and feel like I have gotten
nowhere. I dislike my doctor,don’t know what to do because I don’t KNOW
what kind of doctor I’m looking for in the first place! I have four children and
I am tired of being irritable,nervous,and a whirling dirvish:) Here lately,I feel
as if I’m slowly losing control. Is this normal? Also here lately,I feel
more tired,as if I CANNOT continue to do what I need to do in order to take care of
my children,myself,or anything else. I feel tired,but HYPER at the same time. It’s
very….WEIRD?!?!?! Thanks for listening- all of you!

Tammy

[Anonymous]

#1147410

Hi Tammy

Feeling tired but HYPER at the same time makes a lot of sense to me. I felt that way for a very long time. I define it as restless exhaustion! The explanation I got for it is that you feel tired because everything in your body is running in high gear. Good luck to you!

Cindy

[Anonymous]

#1147411

Hi,Cindy! You mentioned that you “felt like that for a very long time”.
Does it ever get better? Go away?? Also,if I’ve had Graves’ for 7 years,is this indicative that something is wrong?
As I said,I don’t like my current doctor and am seriously thinking of
finding a better (???) one. Thanks for your letter ~ and for your time.

Tammy

[Anonymous]

#1147412

Hi Tammy,

Has any Doctor mentioned RAI or is this something you don’t want to do? I know that is one cure for the Hyper. I had RAI 4 months ago and now just keep getting meds evaluated and hear that this lasts up to a year, but I remember well the exhaustion feeling like it was yesterday, the hypo feeling is diff. but at least you know they are working on getting you into a normal range. This is one strange disease, and staying up on information is very helpful, also getting support from this board is another helpful tool.
Best Of Luck to you!!!!
Blessings Sally

[Anonymous]

#1147413

Hi Tammy. I know how you feel. I actually cut my work week from five days per week to 3 days per week for a couple months. i started a pretty rigit health food diet and took vitamins. This is after RAI and then getting on a thryoid replacement hormone. It has been almost 7 months and now I am finally getting energy back–no more achiness–almost no feeling of losing my mind. Hang in there. It does get better. Have you had any treatment for your Graves? If so, what? I would suggest a different doctor if you don’t have one that will work with you.
I really hear the pain and frustration in your e-mail. Sometimes I read other peoples posted messages and I cry because I’m so happy that people out there understand and I’m not the only one feeling crazy or tired. But, like I said, it gets better–or it should. Find a doc that will work WITH you!

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