TED - feeling pressured to have surgery

[Guest guest]

Hey all!

I have seen both my endo and neuro ophth this week. My labs are the best I

have had since RAI Sept. 2001! I am on Synthroid .175 for the last 2 months.

TSH .7 (.35-5.5)

FT4 2.0 (.61-1.76)

FT3 3.4 (2.3-4.2)

This is my first ever FT3 test in 3 & 1/2 years of thyroid disorder and I

told my doctor I want it run every lab. I am sure that if I had not asked

for FT3 she would have lowered my dose of synthroid as the FT4 is high and

the TSH is low end normal. I don't think she likes me because I buck her.

Oh well, if she wouldn't readily agree to the tests I ask for, I wouldn't go

there anymore either. The staff there is horrible...it is like pulling eye

teeth to get a return phone call. Plus this time, I registered with one of

the receptionists, but she didn't write my name down on the list. So they

had me as a no show and my doc went to a seminar while I sat right in front

of her stupid staff. So my appointment was at 11:45 and I didn't get seen

until 1:30. I was so pissed that I had an anxiety attack and that upset my

parents who had driven me.....anyway, it was not good. Then when I was

checking out, I asked the other receptionist for a copy of my labs. She

said, " Well, the doctor has the file and I don't. " I said, " Well, then I

suggest you GET the file and make me a copy of my labs. " I am sick to death

of poor customer service in all aspects of the business world! It is

everywhere!

Ok, I way way digress here! Sorry!

Now I see the ophth today to recheck an ulcer on my conjunctiva and I tell

her I need a new prism. So she is measuring for it and tells me my double

vision, which used to be verticle, is now verticle and horizontal. So I

would have to have a verticle prism on one lense and a horizontal prism on

the other. Total blurriness! She doesn't recommend a ground in lens because

it would be so thick and my eyes are changing every time she sees me...her

words. Next breath, she wants to know why I won't have decompression.

Didn't she just say my eyes are continueing to change each month? Isn't

stability a prerequisite for surgery?

Endo had asked me the same thing the day before. I said, to both of them, " I

am resigned to the fact that I will probably have to have a series of

surgeries to correct the damage done to my eyes. But as long as my TSI's are

elevated, I have active eye disease. Since no one is willing to treat the

autoimmune disease that I have, I am not going to be chiseled on to try to

fix an autoimmune disorder. I am not willing to undergo 6 surgeries if I

need only have 3. "

Both agreed that it is an elective and that it is totally my call as my optic

nerves and vision are great. But both tried to explain to me that my hot

phase is over and I am on the decline from it and it would be safe for me to

have surgery....haven't seen a surgery ever have to be repeated, don't you

want to get on with your life, blah blah blah.

Now my poor mother who is so sad with my illness is wondering if maybe they

are right and questioning my stance on surgery....because she loves me and

wants me well. So I feel like I am getting pressured on all sides which of

course makes me doubt myself and all that I have learned and read on this

disease.

I don't want to be ugly! I don't want to walk around lookin like a freak

show anymore! But at what cost?

Well, friends, I thank you for allowing me to have a place where I know I can

come to write all of my feelings down, have them read, and know that somone

understands!

Thanks for listening!

God bless,

Hashi's, Graves, TED worsened by RAI Sept. 2001

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1

[Guest guest]

Oh ,

I'm so sorry your getting the push to surgery. To me it seemed as the push

to do radiation and surgery on the eyes was just like the push to have RAI.

The neuro-optho I saw sure downplayed any possible adverse outcome.

I think you are completely right in postponing the surgery. It's is so

obvious that anything that's done surgically won't be right for very long, as

long as your eyes are changing. Why aren't the doctors concerned about

that, if they're really trying to help? Also, isn't there some permanent

damage done each time they operate and shouldn't they be trying to limit that

as much as possible? I'm just afraid the opth would be just like the endo I

had, and not give a hoot how the patient feels after the procedure is done.

I know your mother must be heartbroken, and is desperately hoping to find a

fix. That is only natural. She hasn't researched this as you have, however.

Trust your own knowledge and gut reaction. If anything, we've learned that

doctors assurances aren't worth anything if you turn out to be one of the

unfortunate ones who doesn't have a good outcome.

Have you tried blocking off one eye to get around the blur? I can't think of

anything to help with appearance, except for the obvious sunglasses, and that

get stares too.

Bertta