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  • Liz1967
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    Post count: 305
    in reply to: Amazing Xiidra #1184893

    Kimberly, Dr Douglas is actually my eye surgeon. He did my punctal cauterizations, as well as my decompressions and lid surgeries. I travel to Ann Arbor to see him, although he will be permanently in CA soon.

    Liz1967
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    Post count: 305

    I had TT done six months after starting methimazole due to my rapidly progressing TED. TT appears to stop the progression of TED within a year, in my case six months. I was able to start the reconstructive eye surgeries sooner as it burned out rapidly after TT. The TT itself was easy, no problems and rapid recovery. I have been on levothyroxine for over three years, managed by my internist’s nurse practitioner, labs yearly. I feel totally normal. My residual eye symptoms are due to damage done early in disease and surgeries and are nonchanging i.e. I have no variation due to hormone levels, antibodies, etc as levels are stable and antibodies are no longer in play.

    Liz1967
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    Post count: 305

    Thanks, Kimberly. I had trouble today but clearing browser and restarting worked.

    Liz1967
    Participant
    Post count: 305

    Yes, you can note changes week to week. Sometimes sleeping with your head elevated, either with pillows or blocks under the bedframe at the head of the bed, will help the lid swelling. This allows some of the fluid in the lids to drain a little bit.

    Liz1967
    Participant
    Post count: 305

    Kimberly is right. You should see an ophthalmologist, preferably an oculoplastic surgeon. It is important to get measurements to see how your eyes are changing as well as to look out for any optic nerve changes, which can be subtle at first. Specifically look for color vision changes, particularly to the color red. I am surprised your eyes are not dry, given the retraction you have. At any rate, you do need to be evaluated. Hopefully your eye involvement will be limited to lid changes. I cannot tell from the photo if your eyes are actually bulging or the retracted lids just make it look that way. Another reason to get measurements of the degree if any of proptosis. I had severe eye involvement and I understand your fears.

    Liz1967
    Participant
    Post count: 305

    They have equipment that enables them to avoid nerve damage, which is something not available years ago. I did not have any hoarseness, but I didnt have a goiter so less to remove. Just regular intubation for anesthesia for any kind of surgery, however, can make you hoarse just from mechanical trauma, not nerve damage, during intubation. Garden variety simple laryngitis from allergies, virus, etc can last a few weeks.

    Liz1967
    Participant
    Post count: 305

    I didnt start levothyroxine until four days postop. You always release hormone with manipulation of the thyroid so they usually hold off on replacement for a few days. I didnt check my blood pressure during that time as I felt fine.

    Liz1967
    Participant
    Post count: 305
    in reply to: GD with TED #1184532

    There are studies indicating that removing the thyroid does decrease the antibodies within a year. The eye disease burns out faster also than on methimazole. It is also easier to keep your thyroid hormone levels stable on levothyroxine, especially because your TSH returns to a detectable level. If your eye disease has already burned out, it won’t make a difference, only in that recurrence of the eye disease may be less likely. There are several studies looking at thyroidectomy and thyroid eye disease. Here is just one of them.

    https://www.ncbi.nlm.nih.gov/pubmed/19848063

    I had severe eye disease and that was the main factor in my decision to have a thyroidectomy six months into the disease. The quick return to feeling normal again was also a big factor.

    Liz1967
    Participant
    Post count: 305

    If I didn’t have the eye disease, I would not be on this site. The actual thyroid part was no problem for me and I mostly forget about it except to take the levothyroxne each morning. The eye part, however, was a definite challenge and I hope after five eye surgeries, orbital radiation and IV steroids, in addition to all the complications of severe eye disease, I have some help to offer others facing TED, having gone through all of it.

    Liz1967
    Participant
    Post count: 305

    My thyroidectomy experience was a bit different than Shirley’s. I had surgery at 11, out of OR by 12:30, home by 4. Sleepy next two days, out at the mall for shopping and lunch the third day. No sore throat or hoarseness, scar just had glue on it. Hope it is as quick and easy for you.

    Liz1967
    Participant
    Post count: 305

    CT scan will only tell you how large the muscles are. If you had an earlier CT when eye was bulging, it will tell you if muscles size has increased. Eyes bulge because muscles get big and push eyes forward. Sometimes eyes look like they are bulging but it is actually the lids retracting. CT will not tell you if TED has burned out. Muscles that have enlarged and have fibrosis generally will not return to previous size. Only very mild TED can see any change in muscles. The only sure way is to not see any changes in your eyes for at least six months or so. Some people see improvement which eventually stops, but with moderate or severe TED, things just stop getting worse. I assume you are seeing an oculoplastic surgeon. If your eyes bulge more after you have lid surgery or you end up needing orbital decompression to put the eyes back in place ( make room for big muscles) and thus correct bulging, your lids would need to be redone.

    Liz1967
    Participant
    Post count: 305

    Yes, clinical trials have been done. Anti oxidants were shown in one study to hasten achieving euthyroidism in people on methimazole, but not such a great study. Selenium has been studied a lot. Most dietary improvement is in people with deficiencies and again, symptoms improve, not disease. I would ask to see your docs research, what he bases his claims on, as well as talk to his patients. I took selenium, anti oxidants like quercetin, resveratrol, vitamins A, D, C, gluten free all natural diet, dairy free, anti inflammatory diet and read a book by a lab technician who has never herself treated a patient. I got to watch my eyes go from irritated to bulging and double vision and optic neuropathy. I felt crummy and went from hyper to hypo on methimazole. If these alternative therapies worked well, you can believe some drug company would sell it for big bucks, like they do with the prescription fish oil for hypercholesterolemia. I don’t blame you for trying, I think everyone does. It upsets me to see people on methimazole for ten years taking handfuls of supplements and on diets so restrictive they actually need the supplements just to get minimum daily requirements. Everyone should do what they feel is best for themselves so best of luck with whatever course you choose. This is a frightening and difficult disease.

    Liz1967
    Participant
    Post count: 305

    My biggest mistake was wasting time with gluten free, dairy free, supplements, anti inflammatory pills and diets etc. at the beginning. I know of no good research indicating any of these things are going to fix your Graves disease. I think we all hope for some miracle cure that medicine is unaware of. The symptoms of this disease can wax and wane and if you happen to try some diet or supplement right at the time it wanes, you might make the mistake of believing your “cure” is working. As I said, I wasted six months messing around. If I had a do over, I would have the thyroidectomy at three months, as soon as my FT 4 was low enough, instead of six months. People with autoimmune disease often have more than one, so it would not be uncommon to have Graves and allergies or celiac or lupus, but getting allergy shots, for example, does not mean your Graves is then going to go away. Go with the science based research.

    Liz1967
    Participant
    Post count: 305

    Lower punctum cautery worked great for me. I have the eye disease and have had many corrective surgeries once the eye disease burned out, i.e. symptoms like double vision, lid retraction, inflammation had not changed at all in six months. You do not want to do lids if you might need surgery to correct double vision or decompression surgery for enlarged eye muscles. Lids are usually done last. The punctal occlusion is quick and easy and has helped me with dryness. That will not interfere with future surgeries if needed.

    Liz1967
    Participant
    Post count: 305

    I had a thyroidectomy three years ago. I feel the same as I felt before the Graves diagnosis. My thyroid hormone levels were in the normal range at first labs two weeks after surgery but took some months to fine tune the levothyroxine dose to get the TSH between 0.5 and 2.0, recommended levels for people with no thyroids. Even during that time, I felt good. I have been on the same dose of levothyroxine for over two years. As emmtee said, you do have to wait 30 minutes to an hour after taking it before you eat and no calcium, magnesium within four hours. Other than that, nothing special needs to be done. I hear people complain about having to take a pill every day, but most people take something, like birth control pills, estrogen, vitamins, iron, ibuprofen, etc. and as you get older, even more likely you will end up on some kind of medication. Taking the little pill is no big deal. It is chemically identical to the thyroid hormone made in your body. Methimazole is a drug, not made in your body, and as you know, has potentially lethal side effects.

    I am managed by my internists nurse practitioner. Labs yearly as I am stable. I had an endo at first, but saw no need to continue with her. You either take more or less levothyroxine until stable. Not like trying to adjust methimazole while your diseased thyroid is churning out hormone randomly.

    I did not gain weight. My scar is nearly invisible. The surgery was easy, did not even have sore throat. While you will always have Graves in that antibodies can attack eyes and rarely shins, they can no longer attack a thyroid that isnt there and therefore can no longer cause the symptoms created by a malfunctioning thyroid.

    Best decision I ever made. You will do fine with the surgery.

Viewing 15 posts - 151 through 165 (of 293 total)