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in reply to: Finally scheduled for OD surgery! #1183051
I had the 2nd eye done on Monday. MUCH more difficult than the first and accompanied by severe double vision, which really threw me into a downside since the first one went so well. Follow up next week. In the meantime, resting, icing, and foggy tape on my glasses. My other concern is that my surgeon is leaving the practice to deal with family issues and does not know when he will be returning, if at all. Makes one feel very vulnerable.
in reply to: Finally scheduled for OD surgery! #1183044Please let me know how it goes! Prayers for you!
in reply to: Finally scheduled for OD surgery! #1183043My doctor said he would not do both eyes at once. Maybe because I’m so severe? I have a November appt. and have lots of questions. I’m bulged out 24mm, maybe that’s why?
in reply to: Need info about IV steroid therapy #1175891Hi all, had my 3rd IV treatment yesterday. It’s a bit of a roller coaster, I don’t get to sleep until around 3-4 am, and then only sleep until 11 am or so. I’ll be up late again tonight and probably cleaning like a maniac tomorrow. I usually crash around Tuesday or Wednesday and have slept for 14 hours straight. My good days are Thursday and Friday before the IV treatment. I applied for disability and filled out the FMLA paperwork at work until the treatments are complete. I realized I just can’t do both and my commute is 80 minutes each way. My eye specialist filled it out and I’ll be on disability until November 15th–two weeks following the last treatment. What a relief not to worry about work! My eyes have experienced some relief, much less watering, slight improvement in the redness, but it most likely won’t reverse what’s happened already if it’s scar tissue now. At least it looks like it’s halting the progression, which is what we want. I am ravenously hungry and have gained 4 lbs already. I demanded takeout at 1:30 am. Thank God I have the most supportive fiance in the world.
in reply to: Feeling OK but Looking Horrible #1180822Have you had your thyroid levels checked recently? When you go hypo it can sometime cause TED to develop. I’ve had TED since 2011, it went into remission but then came back and now I’m on high dose IV steroids for the next 12 weeks to stall it. The eye specialist told me to get my levels checked ASAP and my T4 was off so I went from 100 mcg of Synthroid to 125 mcg of Synthroid. An opthamologist would be a good place to start to diagnose the TED, if it’s happening. I know it’s scary but it’s better to find out right away–it can progress in a big way very quickly sometimes. Good luck and keep us posted.
in reply to: Need info about IV steroid therapy #1175889Well, confirmation that I am not sleeping, don’t feel sleepy at all and it is close to 1 am. Took a Xanax; no effect. I just made myself a cocktail and I’m hoping I’ll get relief soon. Hope you all are well.
in reply to: Need info about IV steroid therapy #1175888The IV went well this afternoon. The nurses were great and so very reassuring. Aside from a nasty metallic taste in my mouth, I’m feeling okay. While I was there the nurse told us that I wasn’t allowed to leave on orders of my primary doc to take my vitals and blood sugar and call him with that information. He wanted to make sure I was good to go home. I believe I’m being well taken care of. They said I may not sleep tonight, among other things, but it goes with the territory. Once I was all set up, it took about an hour for the drip.
in reply to: Need info about IV steroid therapy #1175886So today is the day I go for my first IV steroid treatment. My stomach is upset and I’m so weepy and scared. I miss my old, healthy self, but I know I have to do this to save my vision. I want to throw myself on the floor and have good old tantrum and I miss my mom. Thanks for letting me vent.
in reply to: HELP….. DOES THIS NIGHTMARE END #1180671Hi Mari, I’m so very, very sorry about what you’re going through. It’s so easy to feel very alone when suffering from Graves’ disease. I start a 12-week course of IV steroids tomorrow to try and stop the progression of the eye disease. It’s like being on the roller coaster ride from hell. All I can say is that there is alot of support here on this forum and some good information. I wish I’d found it when I was initially diagnosed. Since my eye disease began, I’ve had to go on anti-depressants and anti-anxiety medication. I didn’t want to get out of bed in the morning and still don’t like looking in the mirror. If only there were more studies. Keep posting and if you want, feel free to PM me your email address.
in reply to: Need info about IV steroid therapy #1175883In order to prep me for the start of a 12-week course of IV steroids (starting tomorrow, the 16th), I had to have some pre-surgical testing done, including a TB test. I stopped by my doctor’s on the way to work to have my arm checked, thinking it would be quick and I’d be on my way–no such luck. I reacted to the TB test. An absolute positive would be 10mm, my reaction was 7mm. Next thing you know I was given a face mask and sent for an HIV blood test and chest x-ray. The x-ray was clean and my doc gave me the go ahead to begin the IV treatments. I asked if, since Graves’ is an auto-immune disorder, if that could create a false positive on the TB test and he said it was a good question, but couldn’t answer it. Does anyone know if that’s possible?
in reply to: Hypo and worsening TED symptoms #1180609Wow, this really threw me for a loop. I had a similar story–TED not too bad, simple eyelid surgery to correct the retraction in one eye, stable for a bit and then suddenly back into high gear–left and right eye bulging, severe dryness/redness and a lot of swelling. I saw the eye specialist last week and he said it was time to think about IV steroids. Saw my internist the following day, bloodwork the following day, and saw the internist this morning–he upped my Synthroid from 100 mcg to 125 mcg daily. I had no idea the two could be related. I’m supposed to begin IV steroids this Friday, August 16th for 12 weeks. I guess levels should really be checked much more often when battling with TED.
in reply to: Need info about IV steroid therapy #1175881It’s IV steriods–once a week for 12 weeks. Yes, I was probably typing too fast and my vision isn’t what it used to be
.in reply to: Need info about IV steroid therapy #1175879Hi all,
I’m at the point where my doctor has prescribed high doses of steroids to alleviate the progression on my disease. When my medical doctor looked at the script, he said “this is a whopping amount of steroids” and that scared me. It was 500 ml of mg for 6 weeks and then 250 for 6 weeks. As long as my blood work comes back fine, I plan to go ahead with it. Does anyone else have experience with these high dosages and what are the side effects? Thanks to all. This disease is tough to deal with. So little information.in reply to: Orbital Decompression and Anesthesia #1177199Don’t worry about writing a novel–I feel so ignorant about what’s going on with me. The reason I had the eyelid surgery first is because the doctor believed I had stabilized, and since my swelling was so minor, we felt that dropping the eyelid was the only surgery I needed. But about a month after the surgery the eyelid was retracted farther back than ever and my eye was out another 3mm. So I went from cold to hot. No way to know if the surgery caused it to flare up.
Thank you so much for telling your story. I look forward to reading your blog.
in reply to: Need info about IV steroid therapy #1175877Thanks everyone, it’s been awhile since I’ve logged onto this site. Although my CT scan showed a marked increase in swelling, my vision is safe, there is no pressure on the optic nerve. My eye doc wants to continue monitoring me until he’s sure that I’m not in an active phase anymore and then we discuss surgery to make some space in the oribital lobe, etc. My term: make my eye look less wonky. For those of you who have had the surgery, what opinions do you have? Also, you get totally knocked out when they do this, correct? How long for recovery?
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