Viewing 15 posts - 16 through 30 (of 33 total)
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  • sheila
      Post count: 1

      This is the first time I have ever talked to anyone other than family or doctors about my graves disease. I also have the graves opthalmapathy and have been affected for the past five years. I have had orbital decompression both eyes, seven muscle surgeries, thyroidectomy and RAI. I have been on prednisone most of this time and had to endure not only the horrible changes in my looks from the graves but also side effects from the medication. No one really understands unless they have been there just how tramatic this disease is. I have had some wonderfull doctors but I am really getting tired of all of this. I hear patients talk about going into remission.. I must be one of the unlucky ones. I keep telling myself “this too shall pass” and I am still waiting.

      Kimberly
      Online Facilitator
        Post count: 4290

        Hello and welcome to the forum! There was some research done out of Shiley Eye Center a couple of years ago that showed that Thyroid Eye Disease absolutely has an impact on our emotional outlook. In fact, for many patients, the *appearance* changes are even more distressing than actual changes in vision! The good news is that for the majority of patients, surgical procedures are able to restore both eye function and appearance once TED has run its course. I’ve seen some truly amazing “before” and “after” pictures at our conferences and other events. Please check back and let us know how you are doing!

        jaqeinquotation
          Post count: 131

          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

          snelsen
            Post count: 1909

            To jaqeinquotation,
            I suggest to you that you may have Thyroid Eye Disease (TED) as well as Graves. Different, but related subjects.
            Your eyes are bulging out, probably, because the muscles in your eyes are swelling (called fibrosis) That leaves little room for them to stay where they belong. If your eyes feel dry and scratchy, get non preservative eye drops, and lubricant if you need it.

            If you do have TED, an eye doctor who is very familiar with TED is whom you should see. There is quite a bit in the forum about it, but first, I’d get a diagnosis, to see where you are with your eyes.
            Shirley

            Bobbi
              Post count: 1324

              Shirley, I just saw the question you directed to me a few days ago. Life has been a bit chaotic recently, and I have missed a few posts.

              Anyway, I think it was my regular opthamologist who did the field of vision testing on me, a year or so into my TED experience. He also ran a …sonogram I think it was … of the eye muscles. The Oculoplastic surgeon did measurements, etc., and used the data from the opthamologist’s tests.

              jansm
                Post count: 17

                In response to which physicians perform which tests, my oculoplastic surgeon did perform numerous vision tests, including vision field tests, and CT scans. Except for CT scans, most tests were performed in his office.

                About 3-4 months following my thyroidectomy, I began to experience the symptoms with which many of us are familiar — eye dryness, redness, gritty feeling, and other pain and discomfort. I normally wore my gas perm contacts 10-12 hours daily, and I could barely tolerate them for a few hours. I did not notice double vision, but something more like jumpy vision. It did feel sometimes like one eye was not moving properly. I attributed it to the contacts not fitting correctly, following my surgery. My eyes never protruded, though.

                My regular ophthamologist, who is familiar with TED and has other patients with TED, referred me to a strabismus specialist. He, in turn, referred me to the oculoplastic surgeon.

                I live in a large Texas city with many medical facilities. The strabismus specialist suggested bypassing the neuro-ophthamologist in my case. He felt this particular oculoplastic surgeon could, and would, perform many of the same tests as the neuro-ophthamologist. It can often take weeks or months to be seen by the neuro-ophthamologists in my area. The strabismus specialist felt I did not have that luxury. I underwent OD on both eyes about one month later, due to the risk of vision loss. I believe my oculoplastic surgeon may perform more vision tests than many in his field. However, since my experience, I have heard of other oculoplastic and oculofacial surgeons that perform, or have access to, some of the same testing as neuro-ophthamologists.

                pumphreyp
                  Post count: 3

                  hello Jaqueinquotation, I too had TED in 2002 with the swelling and bulging of my eyes so bad my poor husband got where he didn’t want to go out in public with me for fear of people would think he was beating me. The swelling was terrible It felt like I had golf balls for eye balls, my family doctor thought it was some sort of allegic reaction but was very good about listening to me and sending me to different doctors to find out what it was it took awhile but I was sent a ophthalmogist who was able to diagnose TED, I also had the double vison when ever I looked up or down and like you I wore sunglasses most of the time and it was very frustrating not knowing what was going on so just being diagnosed was somewhat of a relief and finding out what could be done, like everyone else on here I am no doctor and I know everyone is different but between my enco and ophthalmologist they agreed radation treatment on my eyes was the best way to go at the time. I had ten treatments which did stop the swelling and it did go down it is something that took a while but the whole time from start to finish my ophthalmogist kept measurements on my eyes to see the progress that was happening. I was told the risk of the radation treatments could cause eye cancer down the line but that was a risk that I was willing to take, the swelling does go down alot but never back to the way it was before the TED. I have seen alot of other people’s worst than mine so I feel blessed with my progress after ten years later, everyday I still finding myself checking for any swelling with my eye balls but so far so good, I hope you find the right doctor to help you with your case and helps to ease your frustrations with this. This forum is so awesome to hear that you are not alone I didn’t know back then that it was here it sure would have saved me a alot of grief had I known. Like the others have said, things will get better it is dealing with the right now that gets to you most. God Bless and good luck………..

                  jaqeinquotation
                    Post count: 131

                    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?

                    gatorgirly
                      Post count: 326

                      Sorry to hear about the prednisone but, in the end, it should help. Was it prescribed only for your eyes? I’m just curious, because my endocrinologist was the first one to finally tell me, “Yes, you had TED. Go to the neuro-opthamologist in town,” when my regular opthamologist told me it was allergies or an eye infection. So although my endo clearly could tell it was TED, he didn’t prescribe anything for it. Maybe he would have if I couldn’t get an emergency appointment with the neuro-op later that day. And you mentioned that you’re hypo, but didn’t say anything about starting replacement…will you begin taking it soon?

                      Anyway, I started at 50mg/day, so a little bit more than you. It helped with the pain immediately. I remember I picked up the prescription after work on Friday last July and when I woke up Saturday morning, I was pain-free for the first time in weeks. The swelling and bloodshot look was gone the next morning as well.

                      I tapered down by 10mg every three weeks, so 50mg for three weeks, 40mg for three weeks, etc. I ended at 5mg and had no return of symptoms, which my neuro-opthamologist was really concerned about. If my math is correct, I was on the prednisone for about 18 weeks.

                      As for the side effects, mine were pretty severe but as he told you, everyone handles steroids differently. Mine didn’t start right away. But within a few weeks, I realized my weight had ballooned when nothing fit – not even close – and I had horrible stretch marks on my “love handles,” which weren’t love handles before the prednisone. Sure, I probably aided the weight gain by stuffing my face to curb the intense hunger that prednisone caused, so I recommend stocking up on lots of lean meats and high fiber foods so you will feel full more quickly. Drink a lot of water, too. I actually had to start taking an additional beta blocker in the afternoon to keep my heart rate under control. I also was advised not to exercise because of the heart rate, so I was pretty much doomed to gain weight. Once I stopped the prednisone, that’s when the acne began. It got so bad that I had 10-12 pus-filled, painful cysts on my face at any given time. Finally, after six months and a strict regimen of Cetaphil cleanser and moisturizer and Epiduo, I got it under control. I also cleaned up my diet a lot and drank a ton of water, so that probably helped. It’s now been exactly one year since I developed TED and started the prednisone, and my face is finally clear. I was given Retin-A for the stretch marks but I have very sensitive skin and it caused my skin to be so dry that it turned into sores, so I’ll deal with the stretch marks. I also haven’t been able to lose any of the weight in my mid-section so I really could care less about the stretch marks right now – I’m not wearing a bikini any time soon!

                      I complain a lot about the prednisone, but keep in mind that I understood the side effects were the lesser of two evils – saving my vision was NOT negotiable. It helped tremendously, and I am now ready for OD, so I’m glad I did the prednisone before things got so bad that surgery would’ve been off the table for another year.

                      Also remember that I had a pretty severe side effects. My co-worker was on them for symptoms associated with her colorectal cancer (not exactly sure why), and she had none of the side effects that I did.

                      The one side effect you mentioned that I did not experience was insomnia. Since I felt like I did pre-Graves diagnosis all over again, I was exhausted by the end of the day. I did need to take that second beta blocker or else my pounding heart would keep me awake, otherwise I was asleep as soon as my head hit the pillow. I did gentle yoga and took long walks with the dog, and that has always helped me sleep, even when I was prohibited from exercising.

                      Good choice on the sunglasses. I never turn my office light on. On very bright days, I wear sunglasses at my desk. I always wear them outside until about an hour past sunset. I have a second pair that has a weird tint so even if it’s dark and rainy or close to sunset, I have 100% UV protection but I can still see well enough to drive. Don’t feel embarrassed. And you don’t owe anyone an explanation. If you have fluorescent lights in your office, your eyes might bother you less if you unscrewed them. That’s what I did at my last job, and worked with a small desk lamp instead (since my cubicle had no windows).

                      I hope the prednisone brings you relief soon!

                      jaqeinquotation
                        Post count: 131

                        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!

                        gatorgirly
                          Post count: 326

                          The replacement would be levothyroxine or the brand name Synthroid. Did he say how he plans to treat you for the hypothyroidism? You were trying to achieve remission via meds, right?

                          I’m sure you can ask for a mild sleep aid if you find the prednisone causes insomnia but monitor your heart rate as well, as that may be the culprit to sleeping problems.

                          If your doctor gave you the OK to exercise, then that’s great and I would try to do as much as you can to combat weight gain. I was not allowed to exercise because of my heart rate and because I was taking several medications that temporarily increased my risk of bone fractures. Again, everyone is different but do what feels good and stop when it becomes too much.

                          Bobbi
                            Post count: 1324

                            We’re told not to exercise when we are hyPERthyroid because of the added strain on the heart and muscles. Once we get to normal, or subnormal, thyroid levels it becomes safe to exercise again. But do take baby steps to test things out: sometimes we pull muscles or get shin splints, etc., by trying to do what we did before we became ill. Build up gradually to make sure y ou are not stressing your weakened muscles.

                            You may find that you don’t need replacement hormone once the effects of the tapazole have worn off. It may have been what was making you hypothyroid, and without that drug, you may go back to normal levels of thyroid hormone for a while. Some of us do have the antibodies for both Graves and Hashimoto’s thyroiditis, so we do swing back and forth between hyper and hypo, but most of us that go hypo on the meds can stop them and have normal levels for at least a while. You need to keep being monitored.

                            kalkulatorkredytowy
                              Post count: 1

                              Hello,

                              I am really sorry to hear this. I would recommend you read a book called Thyroid Eye Disease: Understanding Graves’ Ophthalmopathy. There are a lot of useful tips that should help you.

                              I have had similiar problem and after applying few of the techniques I feel much better and symptomps slowly started to disappear.

                              Hope that helps :)

                              snelsen
                                Post count: 1909

                                Thank you, kal…………..!!
                                I have been looking for a good reference on Thyroid Eye Disease. I’ll definitely check it out!
                                Shirley

                                snelsen
                                  Post count: 1909

                                  I’ll get this book from the library. Just looked it up. This author has presented some questionable solutions for Graves’ disease. So I’ll see what was done with TED. Thank you again.

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