[jaqeinquotation]

in reply to: What my surgeon said #1173148

Can you explain how you had Graves 3xs…I didn’t know this was possible

[jaqeinquotation]

in reply to: I don’t think the Prednisone is working #1173200

My vision is definitely affected. Even more so because I wear my sunglasses 80% of the time instead of wearing my prescription glasses.
I’m hoping this appointment goes as well as to be expected tomorrow and I know that I probably need a higher does of the prednisone. But the side effects have me nervous. The end took me off Tapozole because he says according to recent blood work I’m now hyPO…he said that could be why my eyes are swelling but to me that makes no sense because I’m off them now and I still look horrible. I was Tapozole for less than a year.
I called my endo today to ask if I could stop the Preds and take advil for the pain and inflammation-they booked me in to see him tomorrow morning. Now even though I have the opthamologist appt in the afternoon, I’m thinking I should still see Endo to ask why he took me off the tapozole with antibody testing first. Can the opthamologist answer that? Who is going to tell me when I’m in the cold phase? Can I just request to have surgery-take out the thyroid and take out the fat around my eyes?

Im so confused because I don’t really not what the hell is wrong with me. I just know that I look like hell and no matter how much faith I try to have no matter how optimistic I try to be I’m still so messed up and theres no straight answers, This disease is killing me literally…Im trying but I dont know how much longer I can do this if I don’t get any relief. Please pray for me.

[jaqeinquotation]

in reply to: Orbital decompression is a go #1173113

gatorgirly_wishing all the best!!!!

[jaqeinquotation]

in reply to: thyroid and eye disease #1172300

I feel a bit more relieved now. I still haven’t taken them yet because I’m afraid to be up all night. But I believe it may be the best opt right now.
Hmmm, the endocrinologist did not prescribe a replacement (is that the beta blocker?) and actually said it would be ok to exercise. To be honest when I walked into his office, I told him that he was going to prescribe an anti inflammatory for me today and that I wanted to discuss surgery options. I was on a mission to take this disease by the horns. Considering that I had seen the endoc with swollen eyes from the very beginning and he didn’t prescribe anything until I was assertive today. But once I took off my glasses he didn’t hesitate with the referral and prescription at all.

I keep you posted!

[jaqeinquotation]

in reply to: thyroid and eye disease #1172298

Hi and thanks to everyone who took the time to respond to my posts especially pumphreyp and gatorgirly. The support in this forum is absolutely amazing and I wish I could meet you all. Truly no one else understands unless they have walked at least 20 miles in our shoes!

As I said I would come back with an update. I have been referred to an opthamologist and will be seeing the doc on the 27th of July. I met with my Endocrinologist today and he suggested that after recent results from my blood work that I stop taking tapezole. I am now Hypo. He gave me a prescription for Prednisone starting off 40g/dy. I filled the prescription but I am terrified to take it. I have heard all kinds of horror stories-I know that everyone is different but the majority sounds frustrating. He said it would help with the inflammation, redness and swelling of my eyes. He shared the side effects and I swear right then and there my eyes got wider; weight, mood swings, insomia, tremors, etc. He also said that this is short term and I hopefully won’t have to take them for too long. After viewing the changes with my eyes, he suggested I get to my optometrist right away and is trying to get me an earlier appointment with the opthamologist.

I wear my sunglasses while working as I use a computer most of the day and the lights in the office are way too bright for me. Thankfully my boss is supportive of whatever action needs to be taken so that I can still effectively perform. You can imagine now everyone in the office knows I have an eye problem cause of course they want to know why I’m wearing sunglasses inside.

I know that we are all patients but are there any personal stories out there about prednisone?

[jaqeinquotation]

in reply to: thyroid and eye disease #1172293

Hi again,

I have a question about my eyes again. Is it possible that my eyes can be drained? They seem to getting bigger by the days-LITERALLY. What if I tie a cloth around my eyes at night..will that help? Some days (like today) it seems like my eyes are going to fall right out of my head. I wish I could somehow post a picture so you all can see; the skin right underneath both eyebrows are terribly swollen. I started taking fish oil pills-someone told me that worked for them. I know they will not go back to what I know them to be but if should I be going to the emergency room? I know I have Graves but something isn’t right.
I feel weak yeah but not as much as I did before I started Tapazole. I can sleep no problem and once in blue moon I get the heart racing.

Graves is strictly affecting my eyes.

Help

[jaqeinquotation]

in reply to: thyroid and eye disease #1172282

Hi again,

Just wanted to post a bit of an update. I went to see my family doctor today and requested to be referred to an ophthalmologist. I told him that my eyes have never been measured and that I want to talk about other options that may be available.
He pretty much told me that “they don’t really measure eyes at this stage”, that my eyes will Never go back to normal and that an ophthalmologist won’t be of much help. I fired back (in a nice tone) that I am aware that my eyes may never go back to “normal” as I know them but that I strongly believe that the swelling will go down eventually; I’ll have to live with the “tired” look and learn to apply concealer. He said that he would refer me just to reassure me but that the main objective is to basically normalize the blood levels by controlling the hormones with treatment.

He was clear that surgery or iodine treatment is not likely to make a difference in the appearance of my eyes and that reconstructive surgery may help. My thing is this, we didn’t discuss the crazy double vision or the pain I feel when I look around without moving my head. He wouldn’t or couldn’t tell me if my eyes was mild, moderate or severe and stated that the level of severity is to be referred to the TSH levels. For example Hyper or Storm; storm obviously being severe.

I believe that an ophthalmologist will be able to give me a bit more insight. I need a specialist to observe and diagnose if I need to have emergency surgery due to this double vision I feel is getting worse. I must admit that the hardest part of dealing with this disease is not knowing if and when it will ever end.

Question:

If or when I have the reconstructive surgery, once the puffiness is gone will there be excessive skin left?

Ooh Lord I look forward to the inactive phase.

[jaqeinquotation]

in reply to: thyroid and eye disease #1172281

Thank you so very much snelson for taking the time to reply to my post. I will follow up with my doctor and post any updates soon!

[jaqeinquotation]

in reply to: thyroid and eye disease #1172278

Hi my name is jaQe and I too am new to this. I was diagnosed in about June of 2011. I have the bulging swollen ugly eyes and they have been this way for the past 6 months. I have double vision and have to wait a few minutes after waking up before I get out of bed. It hurts so much to look up down or side to side without turning my head; things I used to do with ease before. Sometimes my eyes feel like I have rocks in the sockets and other days it feels and looks good enough that I can walk through my apartment building hall way without a hat. I wear glasses now and am looking for a new style that will help to hide/or minimize the attention to my eyes because I absolutely hate them. Some days I feel as if I am starting to learn to live the way my eyes have changed but I’m sure most, if not all will agree that it is more than difficult. If I didn’t have to go outside most days I wouldn’t. I could tolerate more if I knew that the swelling would eventually go down but the doctors/endocrin I speak to says it may go down a little but that it may never be the same. I’m taking Tapozole 15mg a day. Blood work one month ago and levels were getting a bit low. Scheduled for more blood work this month. I pray every day to be in remission. I can’t believe how much my looks have changed. I just can’t believe it. I refuse to take pictures now and I dare not look at the ones I took before graves disease. I was never one to make up. Now I have to learn to do whatever I can to hide the look. Its gross and I don’t mean to sound negative but I’m venting because noone else knows what the hell I’m talking but you guys who share this disease with me. I’m sorry if I upset anyone I just needed to get some of these feelings off my chest.

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