[Sue_Conard]

in reply to: Shingles Question #1062095

Thanks Ski & all…I actually thought I had researched this good on this site, but found a post below dated 2002 on the SAME EXACT ? that Jake had answered…looks like others have suffered as I have with this issue. I appreciate all the responses as I am on Tapazole as well…
by odette » Tue Apr 30, 2002 1:41 pm

Does anyone know of any connection between shingles and hyperT? I have been taking Tapazole for about six weeks now, and have broken out with shingles twice in one week (and they’re coming again). Doc said "no connection" and questioned whether it’s actually shingles. (I’ve been having it for 20 years and KNOW what it is! But I don’t have enough experience with Tapazole to know if there is any influence.)odette

[Sue_Conard]

in reply to: TED & Pain in head #1064952

Thanks Bobbi & all…I think you two are CORRECT, in that, I also have TMJ and a mouth guard to wear, but I ALWAYS want to blame EVERYTHING that happens with my eye changes, etc. on TED. Never gave it a mins. thought that it could be my TMJ kicking in. Time to put the mouth guard in and see what happens!! THANKS ALL!!

[Sue_Conard]

in reply to: Lost…. #1064985

Hello Lost…what I’ve learned from this site is that every person is "individual" on how this disease affects their daily living. What I can tell you, is that this is a MONSTROUS disease to endure and we are here to support, listen and help in any way we can. As you can tell, my treatment has been very different than Snelson’s on this site. When I was in my hot phase, my doctor was very aggressive and I allowed him to do whatever was necessary to take the pressure off the optic nerve and to help my vision. I believe, b/c he was aggressive, that my vision is "tolerable" at this point. My dr. also recommends strasbismus surgery, but I too have learned to turn my entire head on my downward gaze b/c of the muscles the antibodies have affected, to turn my head when driving and there are days, when I’m not tired, that I can control my dbl. vision by looking way up and then bringing my eyes back down. It’s exactly what Nancy says in her post.

It sounds crazy, but my dr. is amazed I have this much control and understands that surgery will be my last resort. The reason I don’t want to have surgery is b/c you can have several different surgeries b/f your vision is perfect again and given my lifestyle, I choose to work around the damage that has been done. What I don’t know, and maybe someone can answer this for me on this site, is how a dr. can tell how much damage that’s been done to the muscles once you’re in a cold phase. Would a CT scan show this or is this something that happens with the measurements b/c my measurements change every month, depending on what my eye muscles choose to do the day I’m at the GD opthalmologist.

I agree with SNelson too …you MUST obtain a CT Scan and find the BEST Neuro-opthalmologist in your area. I was blessed, in that, I found an eye specialist that specializes in GD patients too. He LOVES treating and understanding how each TED patient is different and marvels in the research for this disease. My eye dr. is WONDERFUL and his wife goes to the same endocrinologist I do in my area. Good medical care is very important with this disease…I changed endocrinologists 3 times b/f I found the right one for my treatment. Please keep us posted…no one wants to lose their job in this economy, but in order for you to maintain and keep your wits about you through this diagnosis, finding the right dr. in your area that understands TED and all the treatment available for you is so important!!

[Sue_Conard]

in reply to: Lost…. #1064979

Hello there "Lost"!! You’re not LOST any longer, you found US!! This is one of the most informative websites you’ll ever find for our common thread, GD and TED. I too have TED (thyroid eye disease). When I read your post, I relate. I was scared to death when I was first diagnosed b/c I love to bead, read and sew. I’ve been officially diagnosed since Aug. ’08. I remember days that I cried b/c I could not thread a needle and had to have my son thread it for me. I remember standing in my kitchen attempting to write a grocery list and every time I looked down, I saw 2 of everything and it was so blurry I couldn’t write on the paper and my heart would pound. I remember crying and the pain in my head got worse. I remember burning my hand with hot water when I went to make a cup of hot chocolate b/c I missed the cup and didn’t understand what was going on. I remember waking up in the middle of the night and closing one eye, opening the other and everything was GRAYED OVER in one eye and so blurry I couldn’t see.
Every morning I wake up with double vision and have since Aug. 08. What I couldn’t understand is "why" and what could be done. After understanding more about TED from this wonderful website, a lot of research, 22 months, 3 IV solumedrol treatments, 20 prism glasses, 10 days of radiation to my superior rectus and medial rectus muscles in my right eye, my vision is TOLERABLE. My GD TED specialist explained that the reason for the double vision in the morning is from laying flat in my bed at nighttime. Apparently the cranial area fills will fluid during the night while lying flat and until it drains from standing upright, I experienced the double vision.
Where I am now is "living with TED" the best I know how. There are surgeries available to correct your vision, but I’ve opted NOT to have that surgery. The other treatment my dr. recommended has personally helped tolerate my vision. I have double vision EVERY DAY, EVERY MORNING, but if I patch the affected eye for approx. 1 hr. per day, I have perfect vision (a little blurry now & then) where I can function to work, to bead, to sew, to enjoy life once more. The most difficult part for me has been "accepting" who I am now. I don’t like having anything control me, including a disease. I feel limitations with who I currently am now, but MUCH HAPPIER than I was 22 mos. ago!!
What I’ve gained through this disease on this website are FRIENDS, SUPPORT and some of the most knowledgable facilitators that have walked your walk and are HERE to tell you that things will get better for you with the right treatment. There were many nights of frustration and heartache when friends I’d never met before on this website lifted me up and made me feel whole again. Best wishes on your new GD/TED journey…we’re here for you!!

[Sue_Conard]

in reply to: Leukocyte Hyperplasia lesions?? #1065021

Interesting Bobbi and it does b/c the sun does cause me to break out more often. Do you know if her lesions "itch"??

[Sue_Conard]

in reply to: So curious about how GD affects eyes. #1065100

Thanks Bobbi, I will and will let you know when I find out the difference…there must be some sort of difference, I’m sure!! Appreciate your response.

[Sue_Conard]

in reply to: So curious about how GD affects eyes. #1065098

Thanks ALL for your generous explanation, but, I have one question. I understand that RAI is still a "potential" treatment for me b/c the two diseases are independent, but "why" does everyone recommend that you DO NOT have IODINE contrast in the form of cat scans b/c of TED YET, it’s "okay" to have RAI which is "iodine" to destroy your thyroid? Isn’t "iodine’, "iodine"? This is "very confusing" for me.

[Sue_Conard]

in reply to: So curious about how GD affects eyes. #1065095

Hello All…it’s been quite some time since I’ve been on this site, but I’m currently 22 mos. into GD along with the TED. I went through 3 solumedtrol treatments as well as the radiation for the TED and was on tapazole for 20 mos. When my old endo dr. wanted me to have a thyroidectomy, I found another endo dr. that disagreed with him and took me off ALL my medicines!! Since he took me off all my meds, my vision has slightly improved (which is weird since the two are not related!) I’m thrilled, BUT, I’m scared too. My new endo dr. said that "if" I go back into hyperthyroidism, he will consult my TED dr. and consider giving me IODINE. I’ve ALWAYS READ that I should NEVER have IODINE b/c it could possibly make my TED worsen. Have you or anyone here heard of having IODINE for the GD when the patient has TED?? If so, was it a successful procedure and should I NOT worry or should I look for my third endocrinologist in the area?? Thanks so much for any insight into this since my dbl. vision is "tolerable" after 22 mos. into this monstrous disease.

Ski wrote:At the last conference, there was some talk of the antibodies being closely related, but up until then the conventional wisdom was that the antibodies were separate. In other words, things are still being proven as far as that goes. Still, there appears to be no connection whatsoever between GD and TED other than that they commonly happen together.

[Sue_Conard]

in reply to: strabismus surgery anesthesia-general or local with sedation #1065563

Bobbi: Do you know how many Strabismus surgeries Jake had to go through before he had "perfect vision".

[Sue_Conard]

in reply to: Surgery Complete! #1066277

Hey Kristi: I’m going tomorrow for a second opinion on how surgery will improve my quality of life with the thyroid gone. Can you enlighten me on the recovery time, etc. that your endocrinologist and surgeon has estimated? With the thyroid removed, the stimulator is gone, thankfully!! I wish you a speedy recovery and was wondering if you have TED as well. Thanks for any input and updates you can provide us. Also, is Levoxl and Synthroid in the same family or do you know what the difference is as a supplement??

[Sue_Conard]

in reply to: Advice Needed – Nursing Career & TED with GD?? #1066171

Thanks so much Ski for giving me encouragement when I feel there’s no hope. I’ll be going in April to get another opinion on treatment, in hopes that I can get my muscles back to feeling better. I don’t want to have a thyroidectomy, but it might be the solution to this monster, I don’t know. What I do know is that I’m tired of walking around, feeling like I have weights inside my shoes all day long…it’s wearing me down physically and mentally. ” title=”Sad” />

[Sue_Conard]

in reply to: Not going to do radiation or surgery…am I a minority? #1066573

Thanks so much James for your advice. I’m going for another opinion on surgery in April. I’ll let you know what I find out. Right now I’m struggling with the hot flashes, insomnia and muscle pain…argh!!!!!!!! You’d think after 18 mos. this monster would just go away…

[Sue_Conard]

in reply to: Not going to do radiation or surgery…am I a minority? #1066571

[quote:30wzdx9m] James: I would be curious to know if your physician has ever tested your TPO antibody count? Not that that would change your treatment, but would potentially give you and your Dr. better insight as to what is at play. I have a relative with a high TPO count. He is hypothyroid and probably will continue to become more hypothyroid over time because of the elevated TPO antibodies.[/quote:30wzdx9m]

Hey James: My TPO was taken 18 mos. ago when I was first diagnosed and at that time, it was 108 (normal 0-34). Your thoughts? Thanks, Sue

[Sue_Conard]

in reply to: Not going to do radiation or surgery…am I a minority? #1066559

THANKS SO MUCH KIMBERLY & BOBBI for your responses.

I’m currently starting to "level out" with my numbers. My TSI started at 584 and now it’s 125, my TSH has gone between 0.005 to 32.75 to currently 5.7. My T4’s are within, what’s considered, a normal range of 1.0 now.

Like I said, I’ve been fighting this monster for 18 mos. and fighting my endo dr. AGAINST surgery too. Now that my levels are coming within normal range, could I be going into something called REMISSION on my antithyroid drug?? My drs. said I could possibly "level out" in about 18 mos.!! Does anyone know yet if I can scream to the mountaintops yet?? Thanks for any input or encouragement you can send my way!!

[Sue_Conard]

in reply to: Not going to do radiation or surgery…am I a minority? #1066556

You’re NOT a minority, but this post can help me too. I’ve had GD for 18 months now and have on different dosages of Tapazole for treatment. Like James said, I’ve been a see-saw between hyper and hypo the last year and 1/2. I can’t have the radiation b/c I have TED.
My question to any facilitator that can answer this for me is WHAT HAPPENS to those antibodies that we are producing "IF" we have our thyroid removed?? Can the eye disease WORSEN?? Will it eventually affect my other eye?? What does those antibodies ATTACK "IF" the thyroid is not there for it to attack?? Does it decided to attack "other organs"?? I don’t know this answer and I’m so curious so if anyone could help me out here, I might would "reconsider" a thyroidectomy since I don’t know who I am anymore.

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