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Snelson, they have really improved on TT. Mine took 45 minutes, went home two hours later. Two days later, a friend came to help me out while my husband was at work, and we went shopping instead! I was totally back to normal in two days, and the first two post op days were mainly feeling tired, no sore throat, nausea, etc. Scar was tiny, glue came off quickly. My surgeon actually did my levothyroxine dosing first six months. Now my internist orders labs. Don’t really need endocrinologist for that.
Jeff, I was diagnosed with Graves and started on methimazole. Two weeks later the TED started. It progressed rapidly. I have several doctors in my family and I worked in a teaching hospital for years. It was pretty easy for me to do research and consult specialists. Recent studies indicate that antibodies decrease within a year of total thyroidectomy. This is not the case with methimazole. The dangers of agranulocytosis, hepatic damage and vasculitis with methimazole use factored in. Levothyroxine is basically T4 which your body makes, therefore without the toxicity. While I may always have Graves, without a thyroid there is nothing for the antibodies to attack now that the eye disease has burned out. They are, after all, antithyroid antibodies. They don’t attack random organs like liver, kidney, spleen etc. pretty much eye muscles and thyroid. Lastly, levothyroxine is easy to dose. You can never be hyperthyroid unless you really overdose on synthroid so no thyroid storm. It takes a few months to get the perfect dose, but I felt well right away. I had the TT six months from the start of the eye disease, and it burned out about nine months after the TT. There is some evidence that thyroid cancer is slightly more common in Graves patients, I think 17% increased risk. My pathology was clear and one less worry about an already beleaguered thyroid. Lastly, I already had a long course ahead of me with corrective eye surgery. I wanted to spend no time worrying about labs and triggers and whatever, no roller coaster. Those were my decision making points. I chose a surgeon used to doing thyroid cancer surgery because I felt getting all of the thyroid out was my best bet. Years ago they did subtotal thyroidectomies which don’t work out as well. That is my story. I feel well, follow no special diets, get labs every six months and am facing my final eye surgery at one of the leading Graves eye centers in the country. I am very lucky to have had experts help me with my decisions. Good luck with whatever you choose.
PubMed searches the Medline database which gives you access to at the very least abstracts from all research done in US and abroad, often full articles. To access the search page, it is easiest just to Google Pubmed and that will take you there. The actual government website is ncbi.nlm.nih.gov, but unless you are familiar with it, it is hard to navigate to the search page. You just enter key terms, like “thyroid eye” or “Graves treatment”, and it will list all relevant research, going back to the sixties sometimes. The Kellogg research is there, of course. You can access also by author. Obviously, a lot is pretty technical but most of the conclusions are easily understandable to no medical people. Happy researching!
Why isn’t thyroidectomy an option for you? It was a one and done thing for me. So much easier to adjust levothyroxine than methimazole, which has toxicities, and no radiation, lesser risk for eye involvement.
I had a 12 week course of steroid infusion for TED. I had double vision and optic neuropathy. It fixed the neuropathy within the first two weeks but sadly had no effect on double vision or irritation. Six weeks into the infusions, I had a total thyroidectomy. With TED, not a bad idea to have steroid coverage before and after thyroid removal. I had no side effects from the infusions, although I had to have a line put in as I have crummy veins! A home health nurse did the infusions. Within two weeks of discontinuance of the steroids, I got more lid retraction on one side. I did go on to try orbital radiation, which did reverse most of the retraction but it really should be done in first six months of disease if you hope to reverse diplopia and I was at eight months. The double vision progressed a little but everything basically stopped progressing by six months after thyroidectomy. The infusions did not cause any weight gain or the other side effects you hear about with steroids and it did the job to cure my early optic neuropathy. Hope this helps.
Lisa, I travel from Northern Kentucky to see the eye docs at Kellogg Eye at the University of Michigan. I have had two bilateral eye surgeries there so far and scheduled for last in February. The doctors I see specialize in Graves and have lots of experience. You are in great hands. They do a lot of research and are up to date on latest treatments and studies. I had a total thyroidectomy after messing around with methimazole for six painful months and I have never regretted it. You might ask about thyroidectomy in relation to the eye disease. Good luck! You are lucky to be so close to these specialists.
I have had Graves with eye involvement for two and a half years. Began with rapid heartbeat and ankle edema. After Graves diagnosis, methimazole started and within two weeks eye symptoms began, beginning with dryness and rapidly progressing to protrusion, double vision and optic neuropathy. I was put on a twelve week course of IV steroid, in the middle of which I had a thyroidectomy followed by radiation on my orbits. RAI was never a consideration due to eye involvement. The eye symptoms stopped progressing within a few months and my TSH immediately became detectable and normal. My labs have remained normal since thyroid removal but there has been some minor adjusting of my synthroid levels. After the eye part burned out, reconstructive eye surgeries were begun this past spring and I have one more surgery to undergo. This is just my experience, but if I had it to do over again, I would have had the thyroidectomy immediately instead of waiting seven months and messing around between hypo and hyper on methimazole, which I felt did not help my eyes. At the first sign of diplopia, I would have gone for the orbital radiation instead of waiting nine months. I am not a physician and this is just my own experience with what helped me the most. I made my treatment decisions based on lots of research on PubMed, involving results of clinical trials and scientific studies, and consultations with physicians at major medical centers who see a lot of Graves patients. I tried diet changes and various supplements but found none helpful. At this point, I feel fine, my thyroid levels are always within normal limits and my eyes, while they will never be exactly the same, are not protruding, only slightly dry, not retracted or puffy, and double vision is correctable with prism until muscle surgery. My best advice to new Graves patients is to find the best, most experienced medical professionals you can and base your decisions on the most current, sound medical studies. What I learned in my journey may not apply to you, but this disease can move fast so don’t waste time finding expert help. Hope this helps. It does get better. I still don’t forget I have eye issues, but I no longer have to spend any time agonizing over my labs as they remain normal and I feel normal.
in reply to: daughters thyroid issues #1183915Tiredofitall,
“Tweaking” the Synthroid dose within normal range has made a huge difference for me. If TSH is at high end, I feel awful. Keeping TSH around 1, low end of normal, and I feel fine. As long as FT 3 and FT 4 are in normal range, I ignore them.
in reply to: to have ablation treatment? #1183950I had a total thyroidectomy because I also have the eye disease and the vast majority of docs will not do RAI on Graves eye disease patients. Trust me, you do not want to have Graves ophthalmopathy!
Some Graves eye patients do have increased intraocular pressure but first your pressures would be checked and if high, maybe an OCT would be done to see if you have any changes to the optic disc from longstanding glaucoma. I can’t really understand why that test would be run standardly for Graves. An orbital CT scan, however, which is totally different than an OCT, is standardly done to check the size of the eye muscles in Graves eye disease.
OCT is used mainly for retinal problems like cystoid macular edema, macular degeneration, macular pucker, etc. It does show problems with the optic nerve head like glaucoma and can show late stage optic neuropathy and a swollen optic nerve. I have thyroid eye disease and had optic neuropathy but did not have an OCT done to diagnose it. It is a benign test and there is no harm in having it. Hope this helps.
in reply to: Orbital Decompression #1183895I had bilateral lateral orbital wall decompressions with some fat removal. At the six week postop visit, my eyes were at their maximum regression, 5 mm each eye. I had some increased double vision which continued to improve three months out. Lid retraction improved somewhat and the chemosis went away immediately post op. You will see changes for at least a couple of months. The numbness took awhile, improves slowly and still have some numbness four months out.
in reply to: Post RAI – TSH levels too low #1183719I had a total thyroidectomy because I have the eye disease. In the hands of an experienced surgeon, the surgery is quick, easy and has a very short recovery time as well as a lower risk for thyroid ophthalmopathy initiation or progression. My TSH was normal at the very first blood test a couple of weeks post surgery. It had been totally suppressed on methimazole. I adjust my synthroid totally by TSH because I find the free T4 to not be as sensitive. Without a readable TSH, I would have trouble finding the optimal dose. You mentioned a T4. Most doctors use the free T4. I have never had a plain T3 or T4. Hope this helps.
in reply to: Double Vision #1183821SteveS, at 35 prism diopters on one eye, usually the nondominant eye, it cuts your vision pretty much. They say at that strength you are basically seeing with one eye, but for me, I could navigate much better than covering one eye. My case was complicated by the fact I have cataracts from the steroids and radiation, so my vision is already decreased without the prism. If you have good vision, I would imagine the 35 would work better. Yes, you can split the prisms so you are wearing them on both eyes. At one time, I had ground in 4 prism diopters on each eye, 6 stick on on left, 3 on right, giving me a total of 17. I will have strabismus surgery in September hopefully. Waiting for post orbital decompression changes to stabilize. I am wearing 15 prism diopters on one eye right now, slightly under corrected to force my brain to fuse images and maybe tug a bit on muscles. Also doing exercises to try to stretch muscles but don’t know how well that is working. With this disease, you will try anything.
Laura, I also traveled to Michigan for my orbital decompressions to a center specializing in Graves eye. Bet we are going to the same place! I had the bilateral lateral wall decompressions done on March 25 of this year. Diplopia not supposed to worsen but it did. The first few days, one eye was so far in corner could not wear prisms but that has improved pretty rapidly. I am now wearing a 15 diopter press on prism (Fresnel) and I was wearing a 9 diopter prior to surgery. This eliminates the double vision at least straight ahead and my motility has improved. I will not even see the muscle surgeon in Michigan until August 20, 5 months after OD and surgery will probably be a month later. They seem to want to be positive all changes have stopped and this seems reasonable as I have gone pretty rapidly from no prism to 35 all the way down to 15. I am not driving but that is due mainly to cataracts, probably from the steroid and/or radiation. Having cataracts done in July. Seems like all we do with this disease is wait!
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