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in reply to: Newly diagnosed, reaction to Methimazole #1185432
Perhaps they could treat you with Lugols preop. I had it for a week prior but my levels were ok as i was on methimazole too. Here is an article explaining its use in Graves patients who cannot take methimazole.
https://www.ncbi.nlm.nih.gov/pubmed/28325735
TT is the one and done treatment. Short recovery from surgery and even in the few weeks of dose adjustment for Synthroid, for most people you feel better than on methimazole. I was put on 100 micrograms synthroid by my surgeon and am on 92 now. Not much change and I am nearly five years post op. You really feel better very quickly.in reply to: Still fluctuating after all these years #1185417Sue, I forget if we have already mentioned this, but I assume you have had a post TT ultrasound looking for thyroid remnant that could still be intermittently chugging out hormone? I know some studies suggest radiation after TT to be sure nothing at all is left of the thyroid.
in reply to: Still fluctuating after all these years #1185408How much does TSH fluctuate? Mine ranges between 1 and 2.5 or 3 and I leave the dosage alone as it is so minor, almost seems seasonal. I stopped getting FT4, just confused things, did not correlate with TSH at all. Seems weird you are up and down with the same amount of thyroid hormone in, unless something interfering with absorption, like proton pump inhibitors. Since they just figured out proton pump inhibitors interfere, wonder what else might affect absorption that they dont know about!
Here is a new article saying grapes and soybeans affect absorption! Who knew.
https://www.ncbi.nlm.nih.gov/pubmed/24610609in reply to: Allergic to PTU and Methimazole. #1185400There are several cases in the literature of plasma exchanges done to get levels down for thyroidectomy when agranulocytosis has occurred on antithyroid meds. These recent articles were mainly from European journals but I did find this one from the US.
https://www.hindawi.com/journals/crie/2018/4135940/
Sounds rather last ditch, not sure how often it is done here, but hopefully your surgeon has everything lined up to get your surgery done as soon as your levels come down.in reply to: Graves and IBS #1185404I have had IBS-D for years. When diagnosed with Graves 5 years ago, it maybe got a bit worse, but after thyroidectomy returned to its preGraves baseline. Every time I see my GI doc, he always reminds me of the “brain-gut axis,” and he is absolutely right. The gut is like your second brain, and there is communication between the two. Too involved and complicated to go into here, but if you research it, I think it will answer some of your questions. I trust my GI doc. I no longer even see the endo, my internist or her nurse practitioner manage my thyroid replacement.
in reply to: Allergic to PTU and Methimazole. #11853982to 3 months seems like a long time for iodine to be excreted. At any rate, make an appointment to see an ENT surgeon who does a lot of thyroidectomies. Neither my endo nor family doctor referred me to a surgeon, I went myself. A surgeon well familiar with Graves will have no prpblem deciding when you can have surgery. My surgeon actually set my synthroid dose and ordered my labs for six months postop. If no one in your area has the experience, travel to a nearby unversity or other center with an experienced thyroid surgeon, Antithyroid drugs can be toxic even above and beyond allergic reactions. The sooner you can get your thyroid out, the better.
in reply to: dealing with symptoms #1185392Are you back on methimazole? If so, consider thyroidectomy which is a definitive cure for hyperthyroidism.
in reply to: The RAI decision #1185387Levothyroxine has a really long half life, 6-7 days. That means half of it is still in your body 7 days after you take it. Takes about a month for it all to be gone. This means if you forget a dose, nothing will happen to you, you can just take two the next day. I took a double dose one day by accident, nothing happened at all, I just skipped the next day. Noncompliant patients can take all seven days worth at once with no ill effects. So even though you need this med, it is very forgiving, you can easily make up missed doses with no symptoms.
Usually the double vision in Graves is caused by esotropia (eyes turning in) and/or it is vertical diplopia. This means you at first see double looking to the sides at distance, then in central vision at distance, not at near like when reading. Images can also appear vertically double or even at an angle. Eyes may look crossed all the time and as the double vision is caused by the muscles swelling and taking up space in the orbit, your eyes will actually bulge out of the orbits. I am no doctor but your eye symptoms could also fit myasthenia gravis which causes eye muscle fatigue or a neurological problem.
in reply to: RAI or surgery #1185370I had thyroidectomy nearly 5 years ago. Surgery easy, no problems, no issues with replacement hormone. I feel exactly as I did preGraves. I had severe TED so RAI was never considered. I had thyroid removed six months after Graves diagnosis. No regrets. If your surgeon is experienced, should be no laryngeal or parathyroid issues. I had surgery at 11 a.m., back home by 4 p.m. on a Friday, out to lunch and shopping with a friend on Monday.
in reply to: After the surgery.. #1185367Thyroid orbitopathy can recur. It is less likely with thyroidectomy than antithyroid drugs or RAI, but it can happen with any treatment. I chose thyroidectomy because I had the eye disease and surgery would stop it sooner than continuing on meds. So your decision to have TT was not misguided, was actually your best option but there are no guarantees.
I am not sure why you are not feeling well. I keep my TSH between 1 and 2 and I feel exactly as I did preGraves. You might try another endo (I am managed by my internist) or even look for another reason for your fatigue. Another factor could be if not all of your thyroid was removed and a remnant is intermittently chugging out hormone.
Lid surgery is generally the last surgery done on thyroid eye disease. Usually you would have orbital decompressions for bulging and/or neuropathy, followed by strabismus surgery if you have double vision, then lids. In your case, you were lucky enough to only have retracted lids and a year without further retraction or other changes would normally be long enough to wait to repair only retraction (assuming you had no bulging, pressure change or double vision).
Orbital decompression is also done so that should the orbitopathy recur, there will be room in the orbits so you do not risk compression of the optic nerve and further bulging. You should be under the care of an oculoplastic surgeon familiar with Graves. Are your lids just retracted or are your eyes actually bulging, causing lid retraction? I had one minor recurrence shortly after the final lid surgery (I have had 6 surgeries on each eye) and it was treated with high dose oral prednisone, which stopped it nicely. Other options might be IV steroids or ocular radiation (not RAI) if you do not need orbital surgery.
The best advice I can give you is to find doctors very familiar with Graves. If you are close to a center that specializes in Graves or a large teaching hospital, it might be worth the travel.
While you will have antithyroid antibodies always, with no thyroid to attack, they cause no problem unless in the rare case where they mistakenly attack your eyes. One attack is rare, recurrence even rarer.
If it is any help, I had my thyroid removed nearly 5 years ago, completed my last eye surgery 1year ago and except for some residual diplopia, my life has returned to normal. It does end. Sometimes retraction does get better on its own or with steroids but only a skilled ophthalmologist can determine what is best in your case.
In this disease, you really need to be proactive with your care. Research medical specialists and change doctors if you are not happy.
in reply to: Another mountain to climb. #1185360Barbra, my husband is a retina doc and did those injections (he just retired). The injections do work well and can result in restoring your vision. Hang in there!
in reply to: Newly diagnosed and treatment options #1185298I did not experience cough but I would call your surgeon, not because I think it is anything serious, but rather he can make you more comfortable. There should be someone on call for the practice who can help you out. It may be from the general anesthesia rather than the surgery. Dont feel bad about calling on a weekend. My husband is a surgeon and he would rather be called than have a problem with an easy solution turn into something more complicated because of a delay in seeking advice. Glad your surgery went well.
in reply to: COPING Strategies – Memory Issues #1185355As there does appear to be a correlation between the onset of Graves and stress, it stands to reason a diagnosis of Graves is definitely NOT going to alleviate the anxiety/stress that triggered the disease to begin with! As there is no mechanism of action (hormonal, neurochemical etc) to account for attention issues on the basis of Graves disease alone when euthyroid, and anxiety definitely causes memory issues, I could see the underlying anxiety being contributory.
in reply to: COPING Strategies – Memory Issues #1185353Memory problems? I have not seen any literature nor do I know any rationale for Graves affecting memory? Source? Not somethng I have even thought about in connection with Graves nor have I experenced it. Are you speaking of side effect of methimazole or maybe from anxiety? Cannot figure out what would cause memory loss if not hypo, hyper or anxious.
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