TED? and update on labs!
Well, I saw the eye specialist today for my evaluation for TED. He is one that specializes specifically in thyroid eye disease. He lacked bedside manners and was so serious, it made the visit a little uncomfortable. I had all kinds of testing done with my eyes. First, the assistant had me read the letters from a distance with the right eye then the left eye. She then did a color blind test which I passed with flying colors... lol. After that, she took me into a darkened room and checked my field of view... this was a test where I had to push a button every time I saw a spark of light but had to keep my eye looking straight.... I think I passed that one also without any issues. I tried to tell her that I always see floating spots though so I wasn't sure if I was pushing the button for the test or just the usual spots that I always see from day to day. After that, I was taken back to my exam room where she placed a numbing eye drop in each eye which by the way was the most painful part of this whole process. It burned for a few minutes. She then placed two more other drops to dialate my eyes and left me sitting for a few minutes. My eyes felt very tired and she did mention that they would feel heavy. After a few more minutes, another assistant to the doctor came in and ran a few other tests, checked my eye pressure with this weird instrument, and measured my eyeballs. I was then left again for a few more minutes. This time, the doctor with no bedside manners entered. He was all business. He looked thru my file, looked over the results from the assistants, did a couple "hmmm's", then did a couple more other tests that I think the assistant before him did already. He asked me a few basic questions and then said "just one moment". He turned around to the desk, pulled out his recorder, and recorded is dictation. He then turned around and told me to come back annually for an evaluation or come back sooner if I noticed any changes. SO, I asked "Is this allergies?" "Is this transient?""Is this due to my thyroid being removed?""Is this graves attacking my eyes?".... and he answered that it may be transient due to the removal of my thyroid and there is a possibility that it won't get worse but it won't get better than it is and my eyes may remain puffy. I asked if there was anything that can be done to alleviate the puffiness and he said to just monitor it for now... ARGH! REALLY? Seriously? You have got to be kidding me??? And with that, I walked out with blurry vision due to the dialation, paid my copay, and drove myself home 20 something miles in a blur... OH wait.... he did mention some fat he saw behind the eyes but nothing to worry about.... ARGH again! So, here i sit, frustrated, upset, worried, anxious, but slightly relieved but entirely CONFUSED. So, I've decided I will schedule myself for an eye exam next week since I need one anyways and see what the optometrist says that has no clue about TED.... and then I will also get another opinion with another thyroid eye disease specialist the first week of November... and then I'll compare notes and accept what i'm told at that point. I'm no doctor but hello??? Can I get a steroid or an eye drop of some sort to decrease the puffiness??? Moving on... on a brighter note... my new Internal Medicine doctor called- LOVE LOVE LOVE that guy. He's awesome! Got my lab results back from Friday and they read as follows:Free T4: 1.2 (.8-1.8)Free T3: 2.4 (2.3-4.2)TSH: 4.30 (.40-4.50)Looking good aside from my Free T3's being low... I guess my Free T4 could come up a bit and maybe then I'd feel a little better but overall, I feel pretty damn normal ASIDE from the marshmallow eyes :). So, I'm thinking when I lab the second week of November for my endo that if my levels haven't changed much by then, I will request a small dose of cytomel to help bring those Free T3's up.
Replies
Scopiogirl, you just described my eye doc visit. I go every four months since I also have glaucoma. I\'m familiar with all those tests and they can hurt like hell. The problem is TED takes so long to develop and there is so little the doctor can do short of surgery to the eye muscles and you don\'t have that problem, hopefully you never will. Outside of steroid drops for inflammation nothing works.
My eyes are puffy and vampire red each and every day. I also have to use Xalatan drops each night before bed to keep my glaucoma in check, that hurts. I can\'t take a course of steroid drops (which do help with the inflammation) because it will push my glaucoma up. So treatment for one condition, makes the other condition worse.
This is what I do. I try to stay on the hyperside of normal, hypo makes the TED worse. Exercise your eyes by looking up, down and side to side to keep the eye muscles lose. Get an eye mask, put it in the fridge and whenever they feel really bad, the coolness of the mask will reduce the inflammation. Use good eye drops at night for dry eye and whenever they feel gritty. I now wear an eye mask to bed because of my lid lag from the Graves; my eyes do not close all the way and the fan or air conditioning can dry my eyes out so badly I\'d can\'t move my lids. With all that, I\'ve been told that my TED is a one on a scale of 1-10. OMG, I couldn\'t imagine it if they were any worse. They hurt ALL the time, my photo-phobia is intensive and it\'s difficult for me to drive many days because the tears just flow. I take Lutein and strong as I can get em eye vitamins twice a day and they do help.
100% Pure on the net makes a caffeine eye cream that I use when I get up to get rid of the puffiness. I will be interesting to read if you find an eye doc that can do anything at this point for your eyes. My doc will give me a small bottle of steriod drops when he sees I\'m at the end of my rope, but only a sample size since he doesn\'t want my glaucoma to get worse.
This sucks, take care, Susan
Oh wow.... Thank you for sharing your story. That is quite interesting... hmmmm... I bought some flaxseed oil and chamomille (sp?) tea yesterday to use... I heard the flaxseed oil helps tremondously if used early on in TED and the tea bags were recommended to put on my eyes to help with the swelling. I\'ve been researching my butt off since the puffiness showed up last week and today I went out and found an eye gel that contains cucumber and some other ingredients but is organic, paba free, and no sodium lauryl sulfate that I\'m going to give a whirl and see if it helps... This is so frustrating but I just KNOW that there is someone out there, some eye doctor, somewhere who has seen or experienced this and researched this and KNOWS what to do. It makes absolutely NO sense to me that the eye specialist can\'t do anything for someone until the symptoms are so bad that you are considered for surgery.... why not catch it early, treat it early, and prevent the need for surgery in the future? I\'m PRAYING really hard for an answer...
There is a doctor in our area (Central Florida, DeLand), Dr. Kropp, who is sent all of the Graves patients from all over Florida. I love him. He\'s wonderful. I used to see his partner for my glaucoma then insurance problems and they no longer took whatever company we had at the time. Dr. Kropp also does botox and it was thru this experience that I learned so much about my TED. He patiently explained what was happening to me and why and what I might expect as I went thru my disease process (drew pictures). Since I get botox about three times a year, I always make sure I use him because I get a Graves eye exam for the cost of the \'tox and he can see my disease progress. My current eye doc was doing all these graves tests a month or so ago and he asked, \"I might send you for a second opinion.\" I made some remark like, \"oh crap, what are you seeing?\" and he said, \"I want another set of eyes on you. Do you know Dr. Kropp?\" and I told him that he\'s my \"botox\" doctor. He laughed. I also told him that Dr. Kropp takes the time to look at my TED. I mean, I\'m not paying Kropp for a full blown exam but I always feel like I\'ve seen the best after Kropp. I\'m hoping that when I go on Medicare in three year\'s time he\'ll see me as a regular patient since I\'ve been using him for Botox. He isn\'t accepting new Graves patients right now because he told me he gets so many requests for second opinions and does so many TED surgeries and treatment. He did say way back when I was first dx\'d that TED is the most difficult process to treat, he said \"it truly is intuitive.\" The doctor has to notice the most subtlest of changes. He treats glaucoma too which can go hand in hand with TED since eye pressure can be pushed by the TED. He treats his Graves/Glaucoma patients differently then he would separately. He told me how to look up or down when pressures are being taken because most Graves patients pressures are lower on the \"up-gaze.\" I told my current eye doc this because he was \"doing\" the pressures on a straight gaze, he immediately told me to do an up-gaze and behold my pressures dropped. Dr. Kropp was insistent that he does not aggressively treat the glaucoma in his Graves patients and that I might try a different eye drop for my glaucoma to help with inflammation. TMI, I know, but sometimes you can get the best information that you weren\'t expecting. I will always see Dr. Kropp for my botox and my current treating eye doc is grateful. The botox, BTW, helps with my constant headaches as well as wrinkles, I wish my insurance paid for it. Oh, yes, Omega 3\'s and Flaxseed oils, both doctors recommended this; I take both and use flaxseed also on my cereal. Cucumber is soothing to your eyes, but a cream with caffeine will actually take the puffiness away. Check 100% Pure or google caffeine eye creams. Besides working, it smells divine.
Sorry to hear you\'re having these eye problems. Hopefully, your Internist that you like so much can shed some more light for you. He sounds perfect! It does help considerably when you actually like the doctor, doesn\'t it? :) I\'m having some issues with my eyes too lately, but not with puffiness. Do you eyes bother you or are they just puffy? Mine are red at times and get \"irritated\" easily. I chalked mine up to allergies, because of the time of year it is. The pollen and mold is really high right now. I\'ve never been diagnosed with allergies, but have felt over the last few years that they were starting. I had been to the eye doc a few times before even being diagnosed with Graves\' and was just told that I had \"dry eye\". So, I\'ve always dealt with that (can\'t have fans up high or be in really dry places for a long time). I think I will make an eye doctor appt. if it doesn\'t get any better in the next week or so. I\'ll be interested to hear what you find out and I\'ll keep you posted.
Hugs!