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in reply to: Question regarding Endo visits since TT #1185162
My endo was a bit clueless sometimes. Once she was feeling my neck and admitted she forgot I had had a TT! I have a nearly invisible scar. I see my internist’s nurse practitioner for labs. I really really do not anticipate my thyroid growing back! My surgeon was as meticulous for my Graves as he is for his thyroid cancer patients in getting all the tissue out. If residual thyroid tissue is a concern, I would think they would be doing an office ultrasound. Your internist will do neck palpation checking for enlarged lymph glands or things like lymphoma, nothing to do with thyroid.
in reply to: Stored thyroid tissue after TT? #1185156Requirements do change, things like weight gain/loss, estrogen replacement, steroids, maybe even gut bacteria as the gut is where T4 is mainly converted to T3. I have remained stable pretty much for 4 years. TSH has never been above 4 or below 1, and that variation was because in the beginning, I did mess around with dose. I am postmenopausal, no estrogen replacement, no weight or diet changes so except for getting older, I would not expect any changes anyway. I have not changed my diet so not sure how or if that affects things. I have been on levothyroxine manufactured by Lannett all along.
I was not thrilled with my endo, found nurse practitioner in internist office can do as well, but in your case, with the sudden change, I would look for another endo. If you are near a teaching hospital, try there. Most people seem to find their dose to remain stable. I know at least three people with no dose change in over twenty years. I think I would want to know what might be going on to cause this variation. I have read articles suggesting Radiation after TT to be sure there is no thyroid left.
In any case, go slow raising Synthroid for now until you figure out what might be going on.
in reply to: Stored thyroid tissue after TT? #1185154I personally know no one on 200 micrograms of synthroid. The average for a 150 lb adult would be 100 to 125 according to Synthroid dosing schedules (1.7 mcg/kg/day). I am on 94, most people I know are at 88 to 100. Requirement also dependent on age. I have had ultrasound post TT looking for remnants and if there are any, would be microscopic! My surgeon treats every TT like you have cancer, he gets it all out, so with a TSH of 1, I know I am getting enough. It is of course possible you had remnant producing hormone all these years, but I would think hormone production would be erratic as you still have Graves. My instinct would be to find a good endo. The solution is still increasing Synthroid, but with that big a jump in TSH, I would want another opinion. You could also get an ultrasound from your surgeon, as a nonfunctioning thyroid remnant would still be there, just not working.
in reply to: GD with TED #1184551Glad you had such a great outcome! You will notice some changes in the upcoming months as everything heals, but the straight ahead single vision should not change. I have found I need a small amount of prism, like 2 diopters base out, for expressway driving or if I am really tired, but that is no big deal. I can fuse but I get a headache so the prism takes care of that. Single vision is wonderful!
in reply to: Just sharing some “ah HA!” findings #1185149I have read that liquid levothyroxine is better absorbed in people with digestive issues. Maybe you could ask your doc about it. Glad you got a appointment this week, waiting is hard when you feel bad.
in reply to: Just sharing some “ah HA!” findings #1185146For me, I dose solely by TSH. Never get FT3 and I have found FT4 to be inconsistant; i.e. when it should go up with increase in Synthroid, it can actually go down or even stay the same. Only my TSH seems to reflect dose changes accurately. I would bet your doc will call if TSH outside normal limits, but if it is just higher than normal for you, I would for sure call. I keep my TSH between 1 and 2. I just added half of an 88 microgram tab a week (6 mcg per day extra) to get it to 1 as it had been 2.6. I felt fine at 2.6 but I know the ideal for heart health, etc seems to be closer to 1. I feel fine at 1 too but at 3, I would start to notice it. I always wonder if normal thyroids were tested more often what kind of variation would be found. I know prior to Graves, my TSH might be 1.5 one year and 2.5 the next and I would never have noticed anything different. I probably do not need to micromanage it and good thing I only get it tested yearly or I would make myself crazy. If you are noticing symptoms, slowly adding more Synthroid sounds like a good idea as long as you are not changing anything else. Then give it a couple months and recheck. Hope you feel better.
in reply to: Just sharing some “ah HA!” findings #1185144Doesnt make sense. Proton pump inhibitors like Prilosec also interfere with T4 a lot. Are you using more of those since being off steroids? Steroids decrease T4 also so still does not make sense, altho I have been on really hi dose steroids and it did not affect my thyroid hormones at all. I cannot take PPIs as they cause stomach polyps, so no idea if they really decrease T4. The only other thing I can think of is that gluten foods are usually fortified with B vitamins so maybe missing those is doing something, although what that could be I have no idea. I think the most important thing about thyroid replacement is consistency. If you want to keep gluten and soy free, maybe you need to just up your Synthroid to compensate for whatever effect it is having on your TSH and be aware if you go back to gluten or soy, another adjustment may be in order. The gut plays an amazing role in immunity and thyroid hormone conversion so having colitis must be a challenge. I have IBS-D and I found Pepcid of all things to stop it cold, more than Immodium even. Thankfully, it is an H2 inhibitor and doesnt affect anything thyroid! Good luck figuring this out. Must really be a difficult dealing with colitis, but at least you can adjust thyroid hormone by adding or subtracting.
in reply to: Just sharing some “ah HA!” findings #1185142Interested to see what your labs reveal. Gluten sensitivity can cause depression but low carbs can also cause zombie like feelings and depression, so if you have cut carbs a lot since going gluten free, this could affect how you feel. You need carbs to produce seratonin, so unless you have replaced bread, pasta, etc with other hi carb food, you might be feeling the effect of lower seratonin. I feel great first few weeks of low carb, then I crash. If you are not truly sensitive to gluten, it should not affect Synthroid dose. I think you need to eat a lot of soy, like tofu and soy milk, to really affect Synthroid much. Soy is in everything, hard to eliminate it totally, but unless you have suddenly eliminated a lot of soy, your Synthroid dose has already adjusted and shouldnt change much. T4 is converted to T3 mainly in gut and liver, so any changes there can certainly affect your levels.
Why did you decide to eliminate gluten and soy? Were you feeling bad? At 8 weeks post elimination, you could try a challenge of gluten then soy to see if you are truly sensitive. Eat a large serving of gluten and see what happens in next three days. If you have a huge flare of symptoms, you have a sensitivity. Usually going without the food for a long time and then reintroducing it will elicit a pretty definitive reaction.When I had a flare of TED after lid surgery, it happened both times at 4 weeks after the surgery. My initial Graves occurred about two months after the precipitating event. Knowing now what I did not know then, I would have concentrated more on stress reduction and less on trying to control the uncontrollable! Chocolate sounds like a good start!
I found this article that had some info re stress and Graves
https://www.ncbi.nlm.nih.gov/pubmed/24853882
There was another I saw that defined Graves stressors as death in family, divorce, job issues.
https://www.ncbi.nlm.nih.gov/pubmed/26801325
Not sure if you meant flare up of thyroid hormones or ophthalmopathy.in reply to: Antibodies still HIgh #1185130My eyes look normal except the left lid is about 1 mm lower than the right, which is within what is normal variation (there are movie stars with this much variation, like Paris Hilton or Christy Turlington for example). No redness, bulging, chemosis, puffiness or lid retraction. This is after six surgeries on each eye! I also had the lower puncta occluded to help with dryness, but I use Xiidra, the newest dry eye drop, which has been miraculous. I do not need lubricating eyedrops literally all day and I am totally comfortable. I do use eye gel, not ointment, at night and cover my eyes with either plastic wrap or a sleep mask, but I can get away without anything for a couple nights if I need to. I still have double vision to the sides and will wear a small amount of prism when expressway driving or really tired. So while things are different than they were prior to Graves, I am really grateful to have not lost vision (I had optic neuropathy), to see single and to look normal, as well as to have the whole awful dry eye thing relieved. I had really severe TED and my eyes never really improved on their own, they just stopped getting worse. So hang in there, it does eventually end and even if you should need corrective surgery, the results are usually good.
in reply to: Antibodies still HIgh #1185128The eye disease progresses or regresses as it will and there is not a lot you can do to change it. High TSI means you have Graves orbitopathy, the higher the number, the more severe the eye involvement. TSI goes down quicker after thyroidectomy than RAI, but I am pretty sure even when the eye disease is inactive, you still have some level of these antibodies if you have had eye involvement. The eye disease lasts anywhere from 1-3 years. Oral or IV steroids are used if your optic nerve is compromised, as is orbital radiation (I had all three over the course until burnout). There is not much you can do except wait it out, which is pretty awful. I tried selenium which is supposed to help and it really did nothing. Reserve the systemic steroids for when you are in real trouble and get by with the local eyedrops if you can. I did find loteprednol eyedrops, a really mild steroid, to be helpful for the irritation. Hopefully, as your symptoms actually seem to be improving, which does not always happen, you may be close to burnout.
in reply to: low TSH and normal T3 #1185125This is the best info I have found explaining thyroid values from Univ CA San Francisco.
http://www.ucsfcme.com/2012/slides/MFC13003/14SchneiderControversiesInThyroidDisease.pdfin reply to: high tpo and high antibodys? #1185122Even the Bush’s dog nded up with thyroid issues. Does make you wonder.
in reply to: high tpo and high antibodys? #1185120Thyroglobulin antibody could be Hashimotos or thyroid cancer.Thyroid peroxidase autoimmune or thyroiditis or nothing at all or increased risk for cancer. Would think this would merit further investigation but ask your doc.
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