Re: My TED book

[Guest guest]

Elaine,

We are so fortunate to have you as resource for all of us. Thank-you for

writing this book. I have good news. I finally have an appointment to see

the thyroid ophthalmologist on Monday.

Hopefully he will order the antibodies specific to thyroid eye disease

and/or discover what else might be causing the eyelid retraction and vision

disturbances. I am relieved. I could not get the endo nor my GP to listen to

me. The endo just kept looking for systemic signs of Graves and, in the

absence of proptosis felt that the eyelid retraction was of no concern.

In contrast, the first ophthalmologist, though initially stating that

unilateral proptosis was not caused by TED (major red flags went up for me

immediately--oh no, I thought, I know more than he does!!) did measure and

find proptosis and believed that my blood tests indicated (after all) that I

had TED (after I told him that it was the leading cause of unilateral

proptosis).

Then the endo told me that though he didn't think I had TED, he would refer

me to the TED ophthalmologist because he also specializes in lid retraction

surgery. When I asked him what he thought was causing the lid retraction, he

said he thought it was an eye problem, which is why he was sending me to an

ophthalmologist. Though I stated that my vision was deteriorating, and the

first ophthalmologist agreed, the endo did not make the referral to the TED

ophthalmologist until I called back today and did not make it an urgent

request. GRRRRRR!!! Gnashing of teeth!!!

I called the TED ophthalmologist's office and asked the receptionist what

she suggested I do with my deteriorating vision. She told me to go back to

the first ophthalmologist. I went through the whole story and felt my

usually composed self melting as I related the chronology and the questions

that each visit had provoked, like 'is an ophthalmologist to be trusted if

he doesn't know that TED is the primary cause of unilateral proptosis?' and

'is an endo to be trusted if he doesn't appear to know that TED can occur in

a euthyroid-status patient and doesn't check for TSI antibodies?'

She miraculously found an opening on Monday at 10:25 am. This is good. I

would not want to be held liable if I were she and a patient was calling,

telling me that her vision was deteriorating and she had a retracted eyelid,

headaches and pain behind her eye and no one had requested the relevant lab

work or advocated for an emergency MRI.

I have training in how to deal with difficult systems, especially the

medical system. What do people do who lack information, don't know how to go

about getting it and experience these symptoms? Maybe it's not TED, but TED

hasn't been adequately ruled out and if it's not TED, it still warrants

urgent investigation in my opinion!!

Just to know what to ask for and to have the support of this discussion

group and some confidence in someone, somewhere that knows both what we are

up against and can point us in the direction of healing---in the face of

this kind of run around---is an absolute Godsend!!!

Appreciating you Elaine, and the rest of the team,

Sheila

My TED book

Hi,

My book on Graves' ophthalmopathy was just released. It will be soon

available at Amazon and and Noble, but for now the easiest way to get

it is

through the printer. My Publisher is Health Press, M. Rosenthal's

company and the printer is Trafford. Their website, which has a description

of

the book is <A

HREF= " http://www.trafford.com/robots/03-1280.html " >http://www.trafford.com/r

obots/03-1280.html</A> and the toll free number

is 1-.

[Guest guest]

Congratulations Elaine. I really don't know were you find the time.

Thank you for the help you have given. We are very lucky indeed to have

you.

Cheers

Caroline