[KathyG]

in reply to: Disability for Graves ? #1177252

Thanks to you both for the information. I know I cannot do anything now as I am working ( struggling) fulltime. I am done with eye surgeries, as I said, but eyes bother me immensely. I will check out the website and try to go forward with this. Graves itself is something to deal with, with added eye problems, makes it even worse. Will check out a few things and update later…thank you, thank you !! So discouraged at the moment. No one “gets” the eye problems, except my surgeon.

[KathyG]

in reply to: LAB TESTS #1073944

I have all my paperwork, questions, etc ready for my optha tomorrow, and then will see my endo in March. I just think maybe I need to ride this out as there seems to be nothing to do at this point but take prednisone and I did for almost two months. Seems to help some, but is hard on a person’s body I think and I will not take it for extended periods of time. And then, after weaning off…you go a couple of days and its seems to come back with a vengence, so was it worth it? All of you that have helped me with new info and support I thank you. I will present my case tomorrow and see what happens, as I still search for an optha that specializes in Graves and its eye problems. Kathyg

[KathyG]

in reply to: LAB TESTS #1073940

I don’t know if I am repeating this or not…….thought I opened a new topic by mistake, oh well here goes:

My lab tests are in:

TSH 0.628 range 0.300-4.000

Free T4 1.56 range 0.80 – 1.70

Total T3 129 range 60-181

TSI 492 !! range 0-129

TRab 4.2 range 0.0- 1.0 Borderline 1.0 – 1.5, Positive >1.5

NOW I NEED HELP WITH THESE PLEASE, AM WAITING FOR MY ENDO TO CALL TOO!

THANK YOU
KATHYG

[KathyG]

in reply to: LAB TESTS #1073939

I am going to bring it up to him again……..my numbers were out, and I go every three months like I said, so not sure when it happened but my eyes had gotten worse at the same time. Since I have a liver function test done every three months with my PC, I have them do the TSH the same time and its sent to my endo also. I have never spent alot of time with him, as if my reports look good and my synthroid is where it needs to be I am good to go. Not my opthamologist though, of course I see him way too much! I am going to talk to him about my levels and will have the new set to show him when I go in to see him. I am going to ask him about seeing a optha that specializes in TED as I think he is good, but like I said, I feel as if he has come to a place where he is not sure what to do with me next, thus the surgeon. I would probably have to go to KU med center in Kansas City, and will if that is all there is around. I may have told you that I was sent to one before, and seemed to be a waste of time. Where would I look to find an optha that specializes in TED? You have had how many surgeries? Now its been 13 years, how are you with your eyes? Mine has been since 2005 and seems like forever. My son is getting married in August, I can’t imagine the look in those pictures……yuck. ” title=”Neutral” />

[KathyG]

in reply to: blepharotomy #1074285

ELF: sorry, didn’t see your post at first. I have to look at home but I did have some eye ointment that I used, I will look at home and see what its called, I have not used it since I had the corneal abrasion (hope that is the right name) procedure done. Thank you for the info on the orbital decompression, I had not even heard of it. Guess I need to ask my doctor alot of questions when I go in. Right now I feel my eyes are not "right" for whatever reason and nothing I do seems to help. I appreciate all your information. Really nice to get on here and get such good information and know there are others willing to help out, and those that are still seeking help from this site, wish I would have jumped in a long time ago, but I am here now! I only have my TSH done but will ask about the others before my next lab in March.

Kathy

[KathyG]

in reply to: blepharotomy #1074284

DIANNE: Went to the website for the surgeons and the one I saw was on that website, Khan Eyelid and Facial Plastic Surgery, Overland Park, KS. At this point I am still doing my homework and see my regular opthamologist on February 16th. Has anyone you know of gone to the Mayo Clinic for their eyes. One of my friends insists I do that, so I was just wondering. I am interested in your surgeries you mentioned. My email address is klgreen53@yahoo.com if you want to email me, or anyone else that would like to reply. I so appreciate the help. Thank you. Elf?

[KathyG]

in reply to: blepharotomy #1074282

Elf: I have me TSH done every three months, even tho the doctor says once a year is enough. In October my TSH was 9.171 so they increased my synthroid dose to .112mcg. My count in December was 0.338, so I stayed at the increased dosage. I don’t know about the FT3 & FT4 levels…

Thank you for looking into the blepharotomy. I am seeing my opthamalogist in February and going to talk to him about doctors that should be doing the surgery. I do believe my looks could be improved some, but looking at some peoples eyes in pictures, mine are not nearly that protruding. And right now until my eyes are not ever present on my mind as they sting, burn, bloodshot (right) and tear, I am not going to do anything.

How is orbital decompression done? Is that just for people that have a severe protruding problem? The doctors have never mentioned that to me.

What, if anything do you use for your eyes? (drops?) I certainly appreciate your information and replies to me.

Kathy

[KathyG]

in reply to: blepharotomy #1074280

Elf: My eyes were bad before they ever diagnosed me with Graves, it was a mess. My eyes seem like they have never settled. After the RAI they were bad too. My corneal abrasion procedure was just done less than a year ago, only because like I mentioned, when I opened my right eye in the morning it would take a little piece off, a few days of eye drops would heal that. And it only did it a couple of times a month, but it doesn’t do it at all anymore, was alot of pain for about four days but worth it. I use restasis drops morning and night and just regular moisturizing drops during the day. My eyes have not moved out any further for quite a while, I always have them check that. My right eye is protruding more but nothing really bad. So I do not think the surgery would help that.
They said they would take the fatty pockets out from either side of the nose, turn the corners of my eyes up some, lower eyelids slightly and do something to the tendon I do not remember. Everyone says that their eyes settle, there was a time the beginning of 2008 they weren’t too bad except for the usual annoyances of wind, light etc. Now they start in each morning and seem to get worse as the days go on. I have decided to look seriously at the surgery thing as far as the physicians are concerned as there are no specialists in Topeka shorr of a couple that come from Kansas City. I could look into the KU med center there, I don’t know. For now, until I understand more about my eyes and more about surgery I will not have it done. I appreciate your input…I feel like there is a ton of knowledge out there I do not know and am floundering around and getting more and more frustrated. To elaborate a little further on the first start of all this…….it was my eyes that started looking horrible and was treated for other things before I realized that my last blood said I was hyperthyroid but I was never told, just to continue on my synthroid. It was brought to my attention when I called them about my eyes, it was then I was told to stop the synthroid and had to take other meds for heart rate etc until I could get the RAI done. thanks again.

[KathyG]

in reply to: blepharotomy #1074278

Dianne: I would like to discuss surgeries with you ……..do you want my email address or what? thanks, Kathyg

[KathyG]

in reply to: blepharotomy #1074277

This plastic surgeon does eyelid and facial surgery, and said he was doing a "Graves consultation" on me, I will see if he is reconstructive or not. I am seeing my regular opthamalogist Feb 16th…my right eye just won’t settle down and I am so tired of the pain. I will ask questions of him and see how he feels about the surgery. I don’t know that I feel it really even needs to be done at this time….not even so sure it would improve my looks much. I will look at the web for the other things you suggested. I feel like my doctor no longer knows what to do with me, and maybe so. After the steroid eye drops and oral steroids, he wanted to send me to the plastic surgery. Guess I need to keep researching as alot is up to the patient in todays time I think. There is no support group here where I live, I think that would help too. If I could just get my right eye to settle in a little I would feel alot better. I appreciate your help with this and if there are others out there with suggestions I would appreciate some input. kathyg

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