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  • jaqeinquotation
      Post count: 131

      Started out with 40g/day for 7 days now taking 30g/day for the next 7 etc. Honestly I noticed a small change for the first week in that I felt relief and my eyes weren’t so puffy. I actually felt I could walk around without sunglasses and felt a wee bit more confident.

      Less that 10days later my #$!&# darn eyes are red and swollen again; they feel exactly like they did before. And for some odd reason my neck feels funny. I don’t see my Endo again until mid-Aug, He took me off Tapezole and just said take the prednisone………and………. I’m thinking I should ask for a referral to another Endo.

      I feel like increasing the dosage of prednisone on my own…..maybe I should have been taking 40g/day for 2 weeks and then try to ween off. So confused..I feel like it is getting worse. I know how my eyes feel and how they should feel. I saw the optometrist last week..she claims the pressure in my eyes have not increased and are normal; that my peripheral vision is good. I swear she must be blind….

      I’m so anxious to have surgery but the Endo has no idea if I’m active or not!
      Are you kidding so if he doesn’t know…how will I know when I’m no longer active.
      Who can confirm this for me…Im assuming active is swelling, redness,blah blah blah but how how will I know when I am in the cold phase????

      I see an opthamologist this Friday but I already have plans to have that doctor refer me to a neuro-opthamologist.

      Kimberly
      Online Facilitator
        Post count: 4290

        Oh, no…sorry for this latest frustration! Given the side effects that can come with prednisone, I would not make any adjustments on your dosage without a doctor’s recommendation. Hopefully, you can get some additional guidance on this at your appointment on Friday.

        As for knowing when you are in the “cold” phase and ready for surgery, that is more art than science. Doctors will look at a number of measures to see if the disease has been stable over a period of months. Some docs will also do antibody testing as one measure (but not the only one) of when the patient might be stable.

        Also, was there a reason that your endo took you off the Tapazole? The normal course with anti-thyroid drugs is to take them for at least 12-18 months. The latest medical guidance recommends doing antibody testing (TSI, TRAb) before withdrawing these drugs, as patients with antibodies still raging are likely to have another hypER episode.

        If you are interested in a second opinion from another endo, there are some good resources in the “Looking For a Doctor?” post in the announcements section of the forum.

        Take care — and please keep us posted!

        gatorgirly
          Post count: 326

          I started out on 50mg and taped down by 10mg every three weeks. I’m obviously not a doctor, but 10mg every week seems like a big jump. My neuro-ophthalmologist’s (he was treating my TED, not my endo – another red flag, as your endo shouldn’t be the one treating your eyes) biggest concern was that even though the 50mg seemed to bring immediate relief, that the symptoms would return as we gradually lowered my dose, or when I stopped taking it altogether several months later. Fortunately, they did not.

          Go to the ophthalmologist tomorrow, but keep in mind not all ophthalmologists treat TED. He or she might, and you might not need the neuro-op (they are usually hard to come by and even harder to get an appointment with). Or, you might be told you’re fine, it’s allergies, etc. In that case, absolutely ask for a referral to a neuro-op because a lot of us were told we had allergies or infections when we actually had developed TED.

          No one “wants” to take a higher dose of corticosteroids given the side effects, but you might need to start on a higher dose or at least stay at the 40mg for a few weeks.

          My neuro-op did tell me that there was a chance prednisone would not help at all. For some people, it just doesn’t. He told me in that case, radiation would not help either. Maybe that it his experience, but you could always ask about your other treatment options if you are right and the prednisone is not helping. I forget from your original posts – is your vision affected?

          Good luck tomorrow. Bring a list of concerns and questions since it may be a while before you can get in to see another TED specialist.

          jaqeinquotation
            Post count: 131

            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.

            snelsen
              Post count: 1909

              I agree with all that gatorgirly said. Big points are:
              1. Your endo is NOt the doc to be treating or diagnosing TED.
              2. The eye doctor is. PROVIDED he/she is familiar with TED, and has treated it.
              3. The two are separate subjects. TED and Graves’.
              4. I had prednisone for TED, too. 60mgm for a month with a long taper. It helped a little bit, as soon as it was tapered, the improvement was gone. BUT it relieved pressure on my optic nerve until I could have surgery-which is done in the active phase if we are losing our vision. Otherwise, all surgery should be done in the cold or inactive phase.
              5. Repeat. Graves’ and TED are different. Treated by different doctors.
              6. Stopping prednisone is DANGEROUS. It has to be tapered, taking smaller and smaller amounts over many weeks. Usually 5 mgm at a time . Please do not stop it abruptly.

              Maybe our posts will help you with questions.
              Hope so. Do write again.
              Shirley

              Jules
                Post count: 85

                Def see a neuro opth. I felt relief only on high doses but issues returned every time I decreased.

                I ended up having the solumedrol infusions for 12 weeks last year during the worse of my TED. It helped while I was on the infusions but then my eye got worse after the infusion. I had surgery during the end stage of my active phase to save the sight in my right eye. Why endos believe they know everything, An Endo has no clue about TED.

                Just my opinion

                Carito71
                  Post count: 333

                  Hello. Hope your appointment went well.

                  I’m very new to all this but regarding your question as to who should be the person to tell you if you are in the active phase or out of it, well, I’m guessing the one who diagnosis it. It seems, by some of the responses given by the other forum members, that the person to do so should be your Opthalmologist. Anyway, just my $0.2.

                  Caro :)

                  jaqeinquotation
                    Post count: 131

                    Hi there,

                    So just an update after my opthamolgist appt. He confirmed TED, said the back of my eyes are dry…gave me some eye drops, said he would monitor me for a least a year before surgery and called it a day. I thought I was gonna reach out and grab him-because I’m not sure I can manage this double vision, swollen eyes for another year. The double vision as I’ve mentioned before is driving me up the wall. For example: I’m at work typing this now but everytime I look down at the keyboard then look back up, everything get doubled up for about 2-3 seconds. It sucks and I wonder how much longer I can fool my boss.
                    The opthamologist suggested I see a muscle specialist in 3 months but I made sure that appt was booked for the 3rd week in September. I will see the opthamologist in 3 months though. What I don’t understand is how can he tell me whether or not my eyes are in active or non active phase? I told him I have the swelling since last June and as far as Im concerned that’s been more than a year.
                    What I want to know is can I insist on the surgery? I really feel like I’m loosing my vision but according to the optometrist and opthamologist…I’m good.
                    I’m tapering off the prednisone now-should be done at the end of this week and I am not looking forward to symptoms coming back..The next visit Im going to ask for a referral to the neuro-opt…I’m sure the doc will ask why but Its my right

                    gatorgirly
                      Post count: 326

                      If I’m not mistaken, an MRI really tells the tale of hot phase (active) vs. cold phase (inactive). At least that is what has been used in monitoring my TED. I had an MRI at the onset of moderate TED. As you know, a neuro-ophthalmologist or an ophthalmologist trained in TED can diagnose TED most times simply by looking at our eyes. They usually want to look at our labs as well, because major swings can affect our eyes.

                      So when TED reared its ugly head in my life, I had an MRI within a few weeks. They also did a test – I completely forget what it was called – where they looked at the backs of my eyes…? It was done in the neuro-ophthalmologist’s office so I know it was legitimate. The MRI showed significant swelling in the orbit, so I started prednisone. It helped immediately, and I taped down by a few milligrams every three weeks. The symptoms never returned. My neuro-ophthalmologist told me I was in the cold phase when I finally finished the prednisone and there was no return of symptoms. Since MRIs are incredibly expensive even with insurance, he wanted to wait a full 12 months between scans to see what the difference was.

                      Now that I am preparing for OD, I had that 12-month followup MRI last month. I am no longer seeing the neuro-ophthalmologist because I moved from FL to MA and there are no neuro-ops on my side of the state. The OD surgeon is handling all the tests, and the MRI showed significant improvement and according to my surgeon, “confirmed” that my TED is in the cold phase and we are OK to proceed with OD in September.

                      Were you offered prisms or a patch for your double vision? I know that must be terrible and it’s a very real (50/50) reality for me after the OD, so I’m curious to see how yours will be handled.

                      Who is this muscle specialist you’re seeing? I know Shirley has mentioned her strabismus surgery(ies) was performed by a pediatric surgeon. Is that who you’re seeing?

                      You really don’t want to insist on surgery while your eyes are still changing unless you are about to lose your vision – and a visual field test and an MRI can determine that. You can ask for accommodations to help preserve your vision.

                      Kimberly
                      Online Facilitator
                        Post count: 4290

                        Hello – I agree with gatorgirly’s comments that you don’t want to have surgery while your eyes are still changing…unless it’s necessary to preserve your vision. The reason is that if you have surgery and your vision keeps changing, you could be faced with going through the same surgery *again*.

                        You mentioned concerns that you are “losing vision”. Are you having issues seeing colors? Are you losing some of your peripheral vision? If you could be more specific with your doctors, perhaps they would be better able to assist you in making a decision as to whether immediate surgery is warranted.

                        jaqeinquotation
                          Post count: 131

                          Hi there,

                          I can still see colors but the double vision is intruding on my main gaze-when I stare straight. Not all the time but more than enough and darn is it annoying.

                          Has anyone heard of Radiotherapy?…apparently it can help to reduce the inflammation and swelling/puffiness dramatically and is performed during the inflammed stage.

                          I am definetly interested and want to get this done asap….I’m so excited about this option
                          Would I speak to the Opthamologist or muscle Specialist or can I speak with the endo?

                          I have stopped taking the prednisone after 1 month as I don’t feel it worked much. I was experiencing serious fluctuations in my mood-I was mean, and extremely short tempered and I could cry at the drop of a hat…..I had to stop it.

                          gatorgirly
                            Post count: 326

                            Someone on this board had radiotherapy for TED not too long ago. I want to say it was runbarb.

                            My neuro-ophthalmologist told me that if the oral prednisone didn’t provide relief, neither would radiotherapy. He didn’t go any further than that, and didn’t need to since the prednisone helped, but I would ask if you are even a candidate for it. It’s a drastic measure but if will help you, it’s worth considering.

                            jaqeinquotation
                              Post count: 131

                              Apparently it can help those who don’t respond well to cortisone and was used to treat Mrs. Bush for the same problem. The info says that people with diabetes or poor blood circulation are more at risk for side effects with this kind of treatment. I have neither so I really hope Im a good candidate.

                              Kimberly
                              Online Facilitator
                                Post count: 4290

                                Hello – Following is some info on radiotherapy for double vision. I have heard the same comment as gatorgirly that patients who do not respond to steroids generally don’t have as much success with radiotherapy. This is definitely an issue to discuss with your doctor, though.

                                (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

                                Info from Int’l Thyroid Eye Disease Society:
                                http://thyroideyedisease.org/radiotherapy/

                                Presentation from GDATF 2011 Boston Conference:
                                http://www.youtube.com/watch?v=jy5y6gb2AHk

                                Take care!

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