Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hello
I'm new to this site. I have Graves Eye Disease and I'm currently seeing an ophthalmologist or my double vision and trouble focusing. For the last couple of years, off and on, I get solumedrol intravenously since my body just does not handle taking the steroids by mouth well. Side effects are horrible. The solumedrol tends to correct my vision temporarily. I have not seen an endocrinologist in over three years. My internal medicine doctor treats my hyper thyroid with levoxyl but she only does blood test for TSH. I could kick myself because I think I have needed more blood work in order for her to treat my hyper thyroid. I have lost weight, and I eat all the time, grouchy, rapid heartbeat, hair will not grow, shedding a lot, puffy eyes, watery eyes, gritty and sand paper feeling. My ophthalmologist just ordered labs for my thyroid...about 6 different ones. Thank God. I'm looking for an endocrinologist so that I can get better care. Does anyone have problems with their double vision and/or trouble focusing know if this is permanent damage? If my thyroid gets in shape, will that help with this all. I've had the eye symptoms before but recently this started 9/2014 with gradual different eye symptoms. I hope someone will share their experience and offer some advice on if I'm headed in the right direction or what I should do. BTW, I go back to ophthalmologist this week for f/u on blood work. Comments welcome. "
I'm new to this site. I have Graves Eye Disease and I'm currently seeing an ophthalmologist or my double vision and trouble focusing. For the last couple of years, off and on, I get solumedrol intravenously since my body just does not handle taking the steroids by mouth well. Side effects are horrible. The solumedrol tends to correct my vision temporarily. I have not seen an endocrinologist in over three years. My internal medicine doctor treats my hyper thyroid with levoxyl but she only does blood test for TSH. I could kick myself because I think I have needed more blood work in order for her to treat my hyper thyroid. I have lost weight, and I eat all the time, grouchy, rapid heartbeat, hair will not grow, shedding a lot, puffy eyes, watery eyes, gritty and sand paper feeling. My ophthalmologist just ordered labs for my thyroid...about 6 different ones. Thank God. I'm looking for an endocrinologist so that I can get better care. Does anyone have problems with their double vision and/or trouble focusing know if this is permanent damage? If my thyroid gets in shape, will that help with this all. I've had the eye symptoms before but recently this started 9/2014 with gradual different eye symptoms. I hope someone will share their experience and offer some advice on if I'm headed in the right direction or what I should do. BTW, I go back to ophthalmologist this week for f/u on blood work. Comments welcome. "
{{{hugs}}}
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My doc didn't run it either I just started adding it myself to the lab slip. Instead is having it drawn in the office I always said I had to leave and to give me a slip and would go. Then I just added Ft3 and Ft4. Then in the comments section added please also fax to dr weiss (my fake doc) and my fax number. Guess who go the result first! ") I hate being deceitful but it was the only way I could get the labs I needed. My doc still absolutely refuses t3 for me because of a right bundle branch block I have yet others say I need it. It will always be a struggle with these endos. NJ has some of the worst. I wi be praying for you and hoping for the best. And as mmztcass suggested look at Elaine moore's site!
Blessings
Thank you for your comment. I'm praying that my TED symptoms go away soon. I'm at my wits end with this and the doctors....just praying things get resolved. After looking at copies of my medical records I have struggled with this since 1986. Sick and tired! :(
I hope your TED resolves soon also. I totally get it. Not sure why we still have to deal with it. I read things people post and blog about the condition but never see what a person has done to help resolve it. Other things I read say it will spontaneously resolve. I'm going to try going to a more fully veg diet. I'm getting there but gonna push for full and see if any changes. Since doing my smoothies regularly now and eating more veg again the past week... I have seen slight improvement. So who knows. I had exophthalmos of only my right eye when diagnosed 16 years ago.. After starting PTU it resolved in a couple weeks. I don't have the bulge any longer just lid lag but not enough that anyone else even notices. My guns and sister think nuts when I ask them if they see it... Lol science can do so much more with this disease they just won't "(
I need to try smoothies. Anyone that works best for you? Also, are you on steroids for TED? I'm currently on IV steroid for 3 days. I hope it helps but has returned on the past. I wish I could read that others TED went away.....feeling defeated, doomed. :(. Good to be able to vent.
Thanks big hug to you.
I find the green smoothies I do better with but my go to which sounds off but is palatable is kale, broccoli, cucumber, parsley, banana, wild blueberries, and if I have raspberries I add those. Water and blend the heck out of it. I use micro greens as well.
I have been recently eliminating meat as much as possible along with all sugar and chocolate.
No not on steroids for my eyes. Went to the ophthalmologist and she said I have no pressure in either eye no bulging (he measured ) but I am going to have my doc run TED antibodies. I just get annoying symptoms from time to time and when that's combined with normal aging and working on my computer 12 hours a day I'm sure it's a bad combo!
I will pray your TED resolves it self quickly. They say it will run it's course then resolve. Thankfully your doc hears you and is treating u in some way