Saw the Endo today on my TED

[Guest guest]

Hi everyone:

I finally got into an endo today in Springfield, MO. She diagnosed, as

expected, severe Graves Eye Disease. I have double vision nearly all the

time now, with my eyes visibly moving different directions. She also said I

had become hypo and did some additional blood tests, which results I won't

have until next week. But she said the blood tests she saw from February

show the T3 and T4 (free) as normal, but the TSH as high. As soon as she

gets the new tests back she will adjust my unithyroid accordingly.

She has referred me to an opthamalogist who specializes in Graves Eye

Disease. I see him next Wednesday. In the meantime she has started me on 80

mg of prednisone a day to try to help reduce the swelling of the muscles

behind the eye.

Just to recap, I had Graves Disease in 1979, was treated with (which was the

only option even discussed at the time). I turned hypo a few months later

and was started in synthroid. Then in 1982 I had a sudden onset of

exophthalmos. I woke up one morning and the swelling was dramatic and I

simply could not see. I was put in the hospital for a week on prednisone.

Since then, while I have protruding and dry eyes, things have seemed

relatively stable.

This new bout of TED started last August, which severe headaches, more

swelling, and double vision whenever I was tired. That has now progressed to

severe swelling (my upper eye literally is in contact with my glasses-- not

exactly my lid but the soft tissue above the lashes and under the brow) and

double vision pretty much all the time. I close one eye to drive:-)

My endo said what was basically happening was that for undetermined reasons,

my antibodies are literally attacking the tissues behind the eye, causing

severe swelling in the muscles, loss of elasticity, and compression of the

back of the eye ball. She said USUALLY that runs it's course in a few months

and then settles down again, quite often without treatment. What surprised

her was that she said it is very unusual to have Graves, then TED a couple of

years later (as I had), and then to go 20+ years and have the TED start

again. She said that does not normally happen.

She said the eye doc will discuss options after he measures eye pressure,

etc. She said radiation is an option, but she obviously doesn't like it (nor

do I). The prednisone hopefully will help with some of the swelling, but not

the double vision.

All I know is that I can't see worth a damn, the headaches are monstrous and

seem even worse on prednisone, and I am freeling frustrated as hell!! The

endo was kind and available for questions and genuinely concerned, but I got

the feeling from her that there aren't a whole lot of good answers.

Terri

[Guest guest]

Hi Terri!

I'm glad that your going to see an opthomologist ~ thats great news!

I hope the predisone helps you! I can relate to your headaches

because I too experienced those severe ugly monsters as a result of

TED.

Stay positive and remember your on the right track

Your in my prayers,

Jacque

> Hi everyone:

>

> I finally got into an endo today in Springfield, MO. She

diagnosed, as

> expected, severe Graves Eye Disease.