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in reply to: After a long absence, back again! #1185102
There are internal dissolvable sutures, the glue only holds together the superficial skin. I had glue, no steristrips, after my TT and it healed with barely visible scar.
in reply to: GED/Eyelid Surgery #1185092If the eye disease teaches you anything, it is patience! So very frustrating and it seems all you do is wait. I feel your pain but eventually you do get to the other side. Hang in there. You are doing the smart thing by considering your options and getting a second opinion if needed.
in reply to: GED/Eyelid Surgery #1185090I have had three eyelid surgeries in order to adequately correct eyelid issues, all from a Graves oculoplastic specialist. These were after bilateral decompressions and strabismus surgery. Eight months is optimistic for thyroid eye burnout. I am a nonsmoker and it took about eight months after TT to stabilize., then six months of stability before first surgery. With thyroidectomy, it can burn out more rapidly, like within a year. Otherwise, 18 months to 3 years seems to be time to burnout. Lids are not painful to do, but they are difficult. The lid muscles are thin and can only be redone a limited number of times. Even after TT, when your hormone levels are dependent on your dose of levothyroxine, not your diseased and erratic thyroid, lids can vary for awhile. As Kimberly said, 6 months of no lid changes would be a minimum as well as normal thyroid values for those months. If your TSH has not returned to normal, I would be even more hesitant. Also, be aware that any facial or eye surgery can rarely activate or reactivate the eye disease so err on the side of caution if you can do okay without it. Lastly, choose a n oculoplastic surgeon experienced with Graves. Eyelids are delicate and difficult.
in reply to: Blast from the past #1185081I was on two rounds of high dose Prednisone this year for TED reactivation after lid surgery. First time was a six week taper starting at 60 mg, second time was two week taper from 60 mg. I did not change my levothyroxine dose and except for minor weight gain, had no problems. As I only get my labs done yearly now (unless I foolishly try to micromanage my dose), I have no idea if it caused a glitch in my TSH. I only noticed the steroids stopped the eye issue and helped my hayfever, but no systemic symptoms. If you are on steroid no more than six weeks, I would be tempted to leave Synthroid alone.
in reply to: Thyroidectomy after 7 years of resistance #1185070I had a TT four years ago, best decision I ever made. The only weight gain I have had was because of the high dose steroids I was on a few times for the eye disease. I keep my TSH between 1 and 2, the FT4 is unreliable for me so as long as it is in the normal range somewhere I ignore it for dosing. I feel exactly as I did preGraves. I take no supplements and follow no special diets except trying to eat healthy. I walk several miles a day, garden, babysit a toddler and do yoga and I am 68, so I have plenty of energy. You will be so happy to have your life back. It is hard at first to not blame every little headache or muscle ache or whatever on your dose, but you had those things occasionally before Graves I’m sure. Once your labs are at a good level, you are pretty much good to go. Congratulations!
in reply to: Graves eye disease reactivation warning #1185061Famotidine is generic for Pepcid and it is an H2 inhibitor (antihistamine). It will not interfere with levothyroxine. It is the proton pump inhibitors (PPI) like Nexium, Prilosec, etc that cause absorption issues.
in reply to: Pain after Methimizole #1185078There is antithyroid arthritis syndrome from taking methimazole but that occurs while taking it, getting better when the drug is stopped. I cannot think of any Graves related issue that would be causing your pain when your thyroid levels are normal. Maybe there is something else going on unrelated to Graves.
in reply to: Graves eye disease reactivation warning #1185059The eye disease was responsible for my anxiety and anxiety causes many symptoms, including palpitations, brain fog, malaise, weight gain/loss, etc. Not seeing well, seeing double, dry eyes and looking cosmetically different of course cause a great deal of anxiety and depression. Of course, hyper or hypo can do the same thing. Find a good oculoplastic surgeon and go from there.
in reply to: Graves eye disease reactivation warning #1185057That is a pretty big jump in levothyroxine from .112 to .175. I never went up or down by that much at a time. As far as reactivation, I had bilateral orbital decompressions, bilateral cataract surgery, strabismus surgery and one bilateral lid surgery without reactivation. It was the last two lid surgeries that caused problems and steroids rapidly stopped it. Chance of reactivation is really low. It does help if you have had decompressions in that it gives your eye muscles room to expand without compressing your optic nerve in case of reactivation with muscle swelling down the line. I am happy to say that after six eye surgeries, thyroidectomy and orbital radiation, I am pretty much back to preGraves status so if surgery is advised, I would go for it once your thyroid levels are stable again.
in reply to: Orbital Decompression #1185032Dr Douglas did my decompressions. My first experience with general anesthesia was my thyroidectomy. That would be the riskiest surgery due to release of T3 when removing thyroid and risk of thyroid storm, but they get your levels really low preop to prevent this. It was a piece of cake! The decompressions were also general anesthesia. Your preop testing includes, beside thyroid levels, an EKG. The only time I ever had T3 tested was preop. If you still have a thyroid, they will be really careful your levels are good. You are monitored very carefully throughout surgery. There are always risks with general anesthesia, but this is a relatively short surgery.
Dr Douglas is leaving Kellogg for practice in California. In fact when I saw him last month, I did not realize he had another clinic at Kellogg. You might ask him for the name of an experienced surgeon near you if he thinks you need ODs. You can certainly trust his judgement on this. People come to see him from all over the world.
I was on Propanolol (beta blocker) for rapid and irregular heartbeat when I was first diagnosed with Graves due to hyperthyroidism. I was only on it a couple of months and have never had any heart issues since, so hopefully your heart issues were hyperthyroid related and will not recur.
Hope this helps.
in reply to: GD with TED #1184546Things do get better. I am finally on the “other side”, all corrective surgery done, and back to pretty much normal. A little dry eye, a slight lid asymmetry and double vision to the sides making me have to turn my head. Nothing that intereferes with daily life or appearance. You will get there but it requires so much patience!
in reply to: The thyroid, the eyes and the gut #1185026emmtee, makes me wonder how many of us had GI issues prior to onset of Graves. I had my first bouts of irritable bowel a few months before Graves. Had never been to a gastroenterologist before those episodes. Never connected it with Graves onset, although I did connect the stress triggering the IBS to Graves.
in reply to: Orbital Decompression #1185028Like you, I was really hoping I could avoid orbital decompression. The eye disease burned out in a year as I had total thyroidectomy and orbital radiation and steroids, which tend to hasten burnout, but I waited another eight months hoping to see improvement before I had bilateral decompressions. This surgery was rough but well worth it. It made a huge difference in dryness, bulging, intraocular pressure, appearance and muscle tightness. I had lateral walls done through excision in outer lids, not through nose, as this causes less double vision than the medial through the nose approach and my double vision had stopped progressing so I did not want to make it worse. I had both eyes done at once at Kellogg Eye Center at University of Michigan in Ann Arbor by an oculoplastic surgeon with a lot of experience with Graves. It was a five hour drive from Cincinnati but well worth the travel. If you are near a university medical center, you might check into that or a big city like Indianapolis, Chicago or St Louis.
Most of the time, intraocular pressure will go down when steroids are stopped. I had high dose intravenous and oral steroids. The enlarged muscles can also raise pressure. If your pressures are not in the danger zone (causing glaucoma) and you are off steroids, you can probably wait long enough to get another opinion or find a doc with more experience.
My double vision started with morning only but eventually did progress. You do get a bit more motility when they make more room for the enlarged muscles.
This surgery was the first step for me, was the scariest, but it was totally necessary. After that, I was able to get my double vision corrected and retracted lids fixed. My oculoplastic surgeon commented to me that the lids are actually harder for the surgeon as they are fragile and unpredictable!
So take some time to feel comfortable with it and even get another opinion or find a different surgeon. As long as you are not in danger of glaucoma or optic neuropathy, you have time; however, the sooner you get it over with, the better you are going to look and feel! While you may see some minor improvement, usually if you have moderate or severe TED, it will only stop progressing, not improve anywhere near what you would be happy with. It can take anywhere from 1-3 years for burnout.
Hope this helps.
in reply to: Symptoms lag behind tsh and Free T4 #1185011normandy, I have learned thru this process not to be so quick to blame thyroid hormones! Prozac of course works by inhibiting the uptake of serotonin, thus keeping it in your body longer. You need serotonin to avoid depression. Serotonin is made in the gut with the help of bacteria. You just wiped out a lot of your gut bacteria with antibiotics. Maybe a good probiotic along with the Prozac could help restore normal gut microflora and help with serotonin levels. Depression is characteristically worse in the morning and improves thru the day. Any illness can make you depressed and people with influenza often feel crummy for months afterward, with lingering cough, fatigue, muscle pain, etc. Big changes in your thyroid levels can get you into trouble, of course, but as you have been doing well for years and suddenly run into trouble after an illness would make me look for other causes beside changes in thyroid levels that are still within the normal range. My TSH varies a couple of points periodically (often higher in winter) but stays between 1 and 2.5. The normal range for no thyroid is 0.5 to 3, and I do not notice any symptoms at either end of the range. Everyone is different and you may be more sensitive to changes, but explore other possibilities too. I ended up chasing my tail the first year on levothyroxine because I attributed everything to thyroid levels, resulting in frequent dose changes, up and down, so take any increases slowly.
in reply to: GD with TED #1184542Sounds perfect, mojon. Three Graves patients strabismus surgery is a lot in a week so sounds like you are in good hands.
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