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in reply to: Told “wait and see” while losing my health & job #1185348
I was not willing to wait and see. Six months on antithyroid meds was too long. I had my total thyroidectomy at six months after Graves diagnosis. If I had it to do over, I would have had the surgery the minute my hormone levels made the surgery safe to do. I felt normal right away. No regrets. I am over four years post TT, no problems at all. I had no nodules to worry about. If I had, I would not have messed around with biopsies. My TT was as complete as if I had had cancer, so I would not have wasted time and money with a preop biopsy. They would have done the pathology at surgery. See a good thyroid surgeon in consultation so you can decide what is best for you.
Used to leave part of thyroid years ago. Not a good idea. Object is to remove all of the thyroid, taking away focus of antibody attack, reducing chances of getting eye disease and making hormone replacement easy without a portion of the thyroid haphazardly producing hormone. In addition, the risk of thyroid cancer is eliminated. There are some studies correlating weight gain with thyroidectomy, but this may be a factor of not enough hormone replacement. I keep my TSH between 1 and 2. I did not gain weight related to the surgery but did gain some on prednisone for the eye disease. Be sure your surgeon does a lot of thyroidectomies every year and has experience with Graves. Travel to another center if you need to for an experienced surgeon.
in reply to: Daughter ( 16) surgery? #1185333Drey, you are technically hypo after thyroidectomy because you have no thyroid to make hormone; however, you take replacement hormone (like Synthroid) so you are neither hyper or hypo. With the correct amount of Synthroid, you would not experience either hypo or hyper symptoms. Your level of thyroid hormone remains steady and normal because what you supply via pill is what you get – no diseased thyroid chugging out erratic amounts of hormone that methimazole cannot always keep up with.
in reply to: Newly diagnosed and treatment options #1185294i went home a few hours after surgery, They check calcium levels and if okay, no reason to stay. My parathyroids remained intact and my recovery time was less than a week as far as how I felt. Surgery was 1.5 hours. My husband is an eye surgeon and one of his OR nurses scrubbed in so I know the info is correct. My insurance paid for all of it. I am hoping you are getting the worst case so you are pleasantly surprised! My surgery was really no big deal.
in reply to: “Euthyroid” but disabled by symptoms? #1185317Graves’ relation to stress is pretty well documented, the thinking being that stress and anxiety can trigger it. Those things certainly do not go away after you have been told you have an autoimmune disease with risks of thyroid storm, debilitating eye disease, etc.! Dizziness, tachycardia, fatigue, visual disturbances, can all be anxiety related. PTU, like methimazole, is a drug, not a hormone, and as such does have side effects, including muscle issues, but if your heart etc, check out okay and you are euthyroid, I would not rule out anxiety. Personally, I am euthyroid on levothyroxine and I feel normal as my TSH remains steady and normal. I did not feel great on methimazole due to the erratic hormone output of my diseased thyroid. If your TSH is too low to measure, you may have some day to day variation in your FT4. I do not even test FT4 as in my case it does not correlate at all with TSH and I could never dose hormone replacement using it. During my extended course of the eye disease, I certainly experienced anxiety. Do see an ophthalmologist even if your eyes seem okay so you have a baseline for comparison should changes occur later.
in reply to: Second go around w/Graves #1185312An ophthalmologist is an MD, went to medical school, did residency in ophthalmology and then usually a fellowship if he specializes. An optometrist is not a medical doctor, cannot do surgery, prescribes glasses but has had many years of training and oftentimes is as good as the ophthalmologist in diagnosing and treating general eye conditions. In this case, I would see the ophthalmologist. Exophthalmometry measures how far eyes protrude, and tests for dryness, color vision, muscle balance and pressure should also be performed. The eye disease is unpredictable. It can occur with normal thyroid levels and can worsen at any time. There are no guarantees so you really do need to be under the care of an ophthalmologist familiar with Graves or even an oculoplastic surgeon who would ultimately perform eye surgeries if needed. Watch for changes in color vision, especially if reds seem faded, any double vision to the sides, more exposure of the whites of your eyes, extreme dryness, pain, etc.
in reply to: Newly diagnosed and treatment options #1185292Thyroid antibodies mainly attack thyroid tissue, rarely attack eyes or skin. If you have no thyroid, antibodies can circulate all they want but if they have nothing to attack, they do nothing more than your antibodies to polio or measles, etc, do. Once you have no thyroid, you have no thyroiditis and your antibodies go down. There will always be a chance these antibodies will mistake eye tissue for thyroid and cause the eye disease, but they no longer can affect anything else. If you do not have celiac or gluten intolerance, eat gluten. If you are not allergic to dairy or have lactose intolerance, eat dairy. In other words, with no thyroid, nothing you eat can affect what isnt there. You will be taking by pill the hormone produced by the thyroid. You will have to wait an hour after taking levothyroxine to eat and avoid calcium and magnesium supplements for several hours as they interfere with absorption. Other than that, resume your normal diet and activities. The main reason I got a thyroidectomy was I had no patience with worrying about diet, thyroid storm, methimazole side effects, thyroid cancer, frequent labs, etc. I felt focusing on Graves was giving it too much power. Once the diseased organ is gone, things settle down pretty quickly.
in reply to: Newly diagnosed and treatment options #1185285I had no weight gain, no calcium issues, no lack of energy, no depression. Surgery was easy, home same day, out shopping three days postop. No hoarseness, very minimal scar. I felt like I did before Graves almost immediately after surgery. It has been over four years, on same thyroid replacement dose for years, managed by my internist now. Take a pill every morning and mostly forget about it.
in reply to: Newly diagnosed and treatment options #1185282Ask the surgeon how many thyroidectomies he performs every year, should be at least 50. Also if you will be getting nonradioactive iodine preop, which reduces bleeding. You might ask if he/she usually manages Synthroid dose for the first several months. My surgeon managed mine for six months and he was spot on with the dose. The ophthalmologist should measure eye protrusion with an exophthalmometer, check color vision, check intraocular pressure and do a Schirmers tear test for dryness, in addition to regular vision check. If normal, this will give you a baseline to compare results down the road should you start noticing change.
in reply to: Newly diagnosed and treatment options #1185277I had a total thyroidectomy nearly five years ago. I eat whatever I want, trying like everyone to eat healthy of course, but I certainly do not restrict seafood or anything else. No special diet at all. I did gain several pounds while on steroids for the eye disease but my BMI remains in the normal range. I am 69, I do yoga, walk my two large dogs a couple miles a day and watch my five year old grandson. Plenty of energy, no restrictions on activity. I get my TSH tested once a year. I am within 12 micrograms of my starting dose of generic Synthroid (levothyroxine) so it has not changed in years. The only medication I regularly take is the levothyroxine, one little pill every morning and that is it. If I had not had the eye disease, which left me with some dryness and residual double vision, I would totally forget I have Graves. I feel normal, exactly as I did preGraves.
There are studies that indicate total thyroidectomy may help your chances of avoiding the eye disease, but it happens in people who have had TT. You really cannot live in fear as it is still relatively rare. I would suggest seeing an ophthalmologist even if you have no symptoms just to get baseline values so it will be easier to spot early changes in your eyes. Stress and anxiety are not your friends in this disease, and if you are hyperthyroid you will be even more anxious, so the sooner you get your thyroid hormones in normal range, the better.
I had severe eye involvement that required steroid, orbital radiation and six surgeries on each eye. Today my eyes remain a bit dry and I need to waer prisms in glasses to drive, but even having had the worst case scenario, I am able to function normally visually and cosmetically I only have one very slightly lower lid. So even if the eye disease occurs, in many cases it can be mild with just some dryness and even worst cases like mine are fixable.
So yes, Graves is scary but it is manageable and things do return to normal. Choose your doctors carefully, those with experience with Graves. Have consults with endos, ENT surgeons, radiation specialists and an oculoplastic or even general ophthalmologist. Learn as much as you can and it will be easier to make decisions.
in reply to: Newly diagnosed and treatment options #1185274Diet is not going to cure your Graves. I fell into that trap initially because I really wanted to believe I had some control over the disease. I did the gluten free, selenium supplements, etc and watched the eye disease occur and progress to sight threatening disease. Not everyone has eye involvement but it can occur at any time, even years after your diagnosis and can recur. I had it and it is something you really really do not want to have. There is more risk with RAI but it can happen with thyroidectomy or methimazole too. I chose thyroidectomy as studies have shown the eye disease stops sooner after TT than other courses of treatment. Do not waste time with unproven therapies. This can be a wicked and life changing disease and it requires serious medically proven treatment.
in reply to: I don’t want to wait and see. #1185266I agree with AZGravesGuy. I had TT after 6 months on methimazole. Easy surgery, back to feeling like I did preGraves right away. No problems at all with levothyroxine. No regrets at all after five years. I had zero patience with feeling bad and messing around with frequent labs, changing doses, drug side effects, etc experienced on methimazole. I feel good, have been on same dose for years and get TSH yearly. Take one pill every morning and that’s about it! If you go this route, just be sure your surgeon does a lot of TTs so it is all removed.
in reply to: 3 relapse in 6 years – time for tt? #1185260My only regret is not having a TT sooner and I had it after 6 months of being on methimazole. Surgery was easy, home same afternoon, no pain, back to normal in two days. Immediately felt better and I am within 12 micrograms of my original starting dose of levothyroxine after 5 years, so not changing dose all the time. I get labs yearly, only TSH, and I feel like I did preGraves. I believe it did help stop my thyroid eye disease.
I had orbital radiation, I think I had 2 extra days in addition to the 2 5-days courses. I had severe ophthalmopathy and had completed IV steroids. The treatment itself is no problem and I was on oral prednisone during and for a couple of months after treatment. It stopped the progression of the diplopia and helped a lot with irritation. In my case, it did not return eyes to normal and I had orbital decompression and strabismus surgery the following year. I had optic neuropathy, which is why I had IV steroids and the radiation. It does need to be done like within 6 months of beginning of eye symptoms and I was at 8 months so the sooner the better. The fitting of the mask is a bit scary but being tied down via the mask to the table turned out to be not so bad. I had it done at Emory.
in reply to: Long term symptom questions #1185241I would say no to both questions. Hyperthyroidism could cause fine tremors in your hands and anxiety, but you are not hyperthyroid. Methimazole can cause muscle inflammation but you have been off of it for 7 months. Have you considered seeing a neurologist?
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