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in reply to: What do you think of this theory? #1185923
I realize total thyroidectomy is expensive for insurance companies vs ATD or RAI, but at least for me, it has been a blessing. My endo also did not present it as an option, but then after TT I no longer needed an endo, my primary care has managed my thyroid replacement very well for the past 7 years. It always bothers me when people with Graves think their only choices are ATD or RAI.
in reply to: What do you think of this theory? #1185920https://pubmed.ncbi.nlm.nih.gov/31482765/
2019 study, another perspective on ATD treatment. Note especially the “conclusion” section.
in reply to: What do you think of this theory? #1185912This makes sense. Mast cells, which secrete histamine, affect T3 and gluten intolerance also has a histamine connection. It could be the histamine levels and activation of mast cells that cause your problem. It could also be an absorption issue. Also there is a seasonal variation in TSH levels most people are unaware of, trends higher in winter and lower in summer, which might cause a seasonal, maybe unnecessary, shift in your dose – unnecessary because people with normal thyroids see this same seasonal variation. Certainly worth a trial of total gluten elimination.
in reply to: New TED diagnosis #1185889You still have a thyroid which could at any time randomly chug out more hormone, or less, overriding the dampening effect of your medication. Remember your thyroid is diseased and under attack from antibodies, which will continue to be active as long as they have something to attack. When you have no thyroid, as via thyroidectomy, you are producing no hormone so there can be no variation, no swinging between too much and too little. You take levothyroxine and what goes in is what you have, no surprises. There is one less organ to rile up the antibodies, although they do attack eye muscles too. Regulating by TSH is easiest and on PTU, you have to rely on free Ts for dosing. And after all is said and done, many people on methimazole etc end up having to take levothyroxine anyway.
in reply to: TED not getting better #1185879Tepezza, which is given as a series of infusions, does work. I have a friend whose TED course has been very similar to yours who had good results with it. It is very expensive, however, and may be a problem getting your insurance company to pay for it. If you are close to a teaching hospital with an ophthalmology department you could try going there. I have had courses of oral steroid for flareups years after my last surgeries that did work (I have had decompressions and two strabismus surgeries, 3 lid surgeries, thyroidectomy, orbital radiation and steroid infusions). Weall dread recurrences and they seem to be more common than they previously thought. I hope you find an eye group that can help you.
in reply to: New TED diagnosis #1185887You will need to be followed by an oculoplastic surgeon familiar with Graves. At each visit, pressures should be checked, proptosis (bulging) measurements taken, visual fields done, strabismus measured and color cards done for color vision. At some point, xrays of your orbits will need to be done. The risks include optic neuritis which is potentially blinding and glaucoma from decreased room in the orbits due to bulging muscles. The progression of the eye disease has to stop and remain stable (burn out) for at least 6 months before any reconstructive surgery or strabismus surgery. There is a new drug, Tepezza, that has been shown to be effective. I had zero luck with selenium or diet changes. You need to keep your thyroid levels stable, which is hard to do if you are on methimazole. I chose total thyroidectomy. Should the eye disease threaten sight before burnout, there are options like high dose steroids or orbital radiation. For dry eyes, there is are prescription drops like Restasis and Xiidra (I found this to work really well) as well as unpreserved over the counter lubricating drops. Sleeping with your eyes covered with a mask or plastic wrap helps in severe dryness. The most important thing you can do is find an ophthalmologist, preferably an oculoplastic surgeon, with a lot of experience with Graves. You may need to travel to a teaching hospital or specialized eye center.
Reactivation has been found to be not as uncommon as previously thought. I have a friend who is on her fourth recurrence and I have had it flare up at least once after lid surgery, after which all other reconstructive surgeries were “covered” with prednisone courses. Fortunately my flares were easily treated and mild, but others have not been so lucky requiring repeat surgeries. They have infusions of a drug called Tepezza but it is pricey. See an oculoplastic surgeon to monitor your course and treat if needed before damage is done. Of note, I had total thyroidectomy, steroid infusions, radiation to my orbits, bilateral orbital decompressions and still had a TED flare.
PPI is a proton pump inhibitor, for heartburn, like Prilosec or Nexium. They are not the same as Tagamet or Pepcid for heartburn, which are H2 inhibitors and do not affect absorption.
During thyroidectomy surgery, you get a flood of hormone as they remove the thyroid, which is why they sometimes delay the start of synthetic hormone for a few days. That is why you felt good for the first two weeks until that influx of hormone wore off. They do calculate initial dosing by weight as a starting point, but everyone is different. All sorts of things can affect absorption of levothyroxine, including PPIs, like Prilosec, and your body’s requirements change a bit daily and seasonally but once you reach your optimal dose, any minor variations will not affect you. I dont know much about Cytomel except I think you can eat after taking it but you do need to wait an hour before eating on levothyroxine, and that includes drinking coffee. Give it some time. Once your dosage catches up, you will be fine. I personally keep my TSH between 0.5 and 2. You will know where you feel best.
I cannot find any reports of the drugs you are taking interfering with levothyroxine but ask your pharmacist. A TSH of 22 is very hypo and often it is difficult to differentiate hypo symptoms from hyper, they can be the same. You are on a few drugs that affect anxiety and depression and your problem may be with those, especially if any were prescribed for hyperthyroid symptoms prior to your thyroidectomy. It takes about six weeks for your TSH to reflect any changes in your levothyroxine dose so some patience is required there. Cytomel can be taken wth food but if you were taking levothyroxine without waiting an hour to eat and 4 hours before calcium, etc, that would have interfered with absorption. It usually only takes a couple of months to get to the correct dose but they go slowly in increasing the dose so you dont overshoot and end up hyper and seesawing between the two.
in reply to: Muscle twitching and Graves disease? #1185765The medical term for muscle twitching is fasciculation and the only article I found applies to Hashimotos. It can happen with other diseases so maybe a visit toa neurologist is in order. https://pubmed.ncbi.nlm.nih.gov/12117481/
in reply to: Getting regulated after thyroidectomy #1185756Do not take any calcium within 4 hours of taking your thyroid replacement. It interferes with absorption. You do not start thyroid replacement right after surgery because surgery can cause a release of thyroid hormone and you could be hyperthyroid if you added replacement then. Surgery itself, of any kind, is traumatic to your body and general anesthesia affects some people in odd ways, altho that wears off pretty fast. You could be suffering just from the aftereffects of the surgery itself. After all, you did just have your throat cut open! Be patient with yourself. Right now you have no idea if you are taking the correct amount of replacement and will not know that until your first TSH in a few weeks. This is hard to explain, but thyroid hormone has a half life of 7 days, meaning half of the first pill dose will still be in your system a week after taking it and will not be totally out of your system for a month. So this means the doses accumulate until they reach a steady state. 2 days is not enough to achieve this. You had an influx of thyroid because of surgery, just manipulating the gland, that dissipated over the postop week, probably leaving you a bit hypo before starting replacement. Now it may take a bit to catch up. But catch up you will.
in reply to: Thyroid Cancer #1185752This is one of the major reasons to choose a thyroidectomy as Graves patients have a higher risk for papillary thyroid cancer. You are fortunate you did as the cancer would not have been discovered. As they removed the thyroid and the nodes, you are in good shape. Thyroid cancer is a very curable cancer, especially as yours was caught before any symptoms. They sometimes recommend radioactive iodine after Graves thyroidectomy in patients with no cancer just to be sure all of the thyroid tissue was removed so if this is recommended, it is just to be sure all tissue is gone. Everyone is different, but it usually does not take long to find a good thyroid hormone replacement dose. You should be feeling much better soon. In my case, it was a matter of a couple of weeks.
So glad for you that you chose a thyroidectomy and the cancer was found and removed.
in reply to: New to this and need advice!! #1185748It is hard to keep levels where you want them on methimazole. It requires frequent monitoring and dose changes. It is more difficult when all you have to go on are the FT levels as the TSH is nondetectable. For me, a thyroidectomy made me feel normal very quickly. Your levels will have to go down quite a bit before they will consider surgery. In other words, they need to get you on the hypo side or risk thyroid storm during surgery. This is all much harder with the pandemic, but the thyroidectomy solves the hyper problem.
in reply to: Questions on Thyroid surgery #1185744Everyone is different, but for me, the total thyroidectomy was easy. I had no problems, I felt fine and my levothyroxine dose was quickly regulated. I am within 8 micrograms of my initial dose and it has been 7 years since surgery. I have never used anything except generic levothyroxine. It costs nothing with my insurance, but about $15 a month if you had to pay for it without insurance. Methimazole is a drug. It has side effects, some serious. Levothyroxine is a hormone, chemically identical to what your body makes. I feel exactly as I did prior to Graves (except my eyes, I had thyroid eye disease and multiple eye surgeries). My TSH is checked about every 9 months or so and my internist monitors it, no endocrinologist needed. I use the search engine on Pubmed to find the latest publications and research on Graves. If not for some residual eye issues, I mostly forget I have Graves. I am careful to take the levo first thing in the morning and not eat for an hour after, as well as avoiding some supplements for 4 hours. That is it. I had my thyroid removed 6 months after diagnosis, wish I had done it immediately.
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