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I went to Emory in Atlanta for orbital radiation. They have great doctors there, some of the best in the nation. Couple of thoughts. It is always important to have all of the thyroid removed during thyroidectomy. Best done by a surgeon who does a lot of thyroid cancer where it is vital to get it all. Maybe you have remnants interfering. I had my thyroidectomy 25 months ago. I feel great. I am managed by a nurse practitioner but had an endo for a bit and found it not necessary, nurse does just fine. I just read a study indicating that moderate weight loss can negatively affect t4 to T3 conversion in peripheral tissues. Did you lose weight when you cut out gluten, etc? Sometimes when you eliminate foods, you end up with deficiencies. I think alternative medicine has its place. For example, I have found acupuncture to work for a variety of stress related ailments, but there is no replacing scientific method and research. You should have no trouble finding expert clinical medical help in Atlanta. My adult kids live in Roswell and I envy their health facilities and physicians.
in reply to: Levothyroxine after Completion Thyroidectomy #1184212Waiting is hard. Even at three months, you may have only reached the level reflected on your labs for one month as it takes 8 weeks for the labs to stabilize. Symptoms tend to lag behind labs a month or so. I found that even when my TSH was great, it may take another month, for example, for the dry skin to recover from being on the hypo side a bit. If you are a bit on the hyper side, you aren’t going to feel a great sense of calm the minute your labs hit the optimum for you. Takes a bit for things to settle but patience is hard. I did find it was easier getting it right from slightly hypo and increasing slowly than hyper and decreasing. I really think you will get there soon.
Proton pump inhibitors are things like a Prilosec and Nexium. Causes poor absorption by reducing stomach acid.
in reply to: Levothyroxine after Completion Thyroidectomy #1184210Sounds like 88 daily was a good dose. Right now you are on 92 daily. Your TSH was good at 88. It takes at least 3 months, more likely six, to really even out. If your labs are done before you take your levothyroxine, your FT 4 will be lower. It peaks two hours after taking pill. Coffee cuts your absorption by 25%, even if taken an hour after pill. That is fine, as long as you are consistent, don’t suddenly stop or start coffee without expecting a slight change. If you are on a proton pump inhibitor, that can throw you off a bit too. I have found the TSH to be the best indicator, and I keep it between 1.5 and 2.5. Think of it like pouring water on a dry sponge. At first, a lot runs off, then it soaks in and then it suddenly overflows if you keep adding too fast and you are hyper. Give it a bit of time. I just reached my two year postop mark and I feel great. I am at 88 and have been for months now. At first, I blamed every symptom I had on Graves, ignoring the allergies and migraines, etc I had long before the thyroid issues! I had the severe eye disease which is certainly an anxiety producer. While it took some months to get adjusted, mostly my fault not being patient with the dose, I felt better immediately than I ever did on methimazole. I feel normal and if I didn’t have the eye problems, I would forget I have Graves. Hang in there. Your labs will vary slightly and this is normal, just keep the TSH below 3 and above 1 and give it some time.
in reply to: TT scheduled! #1184205Congratulations! You will love getting your life back. My eye disease stopped about six months after surgery, a year after my diagnosis. I had been on methimazole six months and decided it was not for me! The surgery was easy, lasting 45 minutes, I was home a couple hours later. Recovery was about three days, mainly from the general anesthesia. My labs were normal two weeks after starting levothyroxine. It took awhile to get my dose perfect, but it was never out of normal range. I am two years post op now and feel normal. I am winding up on the reconstructive eye surgeries now. Only tip I can offer is just to be consistent as far as taking your levothyroxine. If you normally have coffee an hour after taking your pill, if you suddenly give it up, it might affect absorption (coffee decreases absorption a bit). Proton pump inhibitors can do that also – no big deal, might have to increase dose a bit. Other than that, you take your pill once a day and get labs once a year when you are stable and your surgeon will know pretty much where to start your dose so that becomes a matter of fine tuning. The choice of surgeon is most important thing and sounds like you have made a good choice. You want every bit of the beleaguered thyroid gone! Good luck! You will do fine.
in reply to: Just diagnosed #1184193I feel like the thyroidectomy cheerleader here, but it was the best decision I ever made. The surgery was less than an hour, I was home in two hours, back to normal activity in three days, the first two postop days just some fatigue from the general anesthesia. You cannot even see the scar. My two week labs were normal, TSH came right up. I have had a couple of synthroid dose adjustments, but I feel normal and would not even think about Graves if I didn’t have the eye disease. The eye disease rapidly burned out after the thyroid was removed and the anti thyroid antibodies decreased. I had never had general anesthesia before this and I was scared, but it turned out to be a piece of cake.
in reply to: Strabismus surgery…. #1184102Laura, I had my OD surgeries at Kellogg Last March, after which my diplopia worsened so prisms weren’t working which was not expected as I only had lateral walls. He thought maybe hematoma. At any rate, it rapidly improved so by September I was in a 12 diopter prism. He wanted to be sure I had achieved maximum improvement before muscle surgery, thus the 11 month wait. Because I have no vertical diplopia and thus no vertical muscles will be moved, he could go ahead and do lids in September as both eyes retracted, left a lot. Now my left lid is a bit droopy and right could maybe come down a tiny bit but looks normal. I used to tape lids at night over ointment or use the press and seal wrap under sleep mask, and use drops every hour during the day. Now I can go 5 hours sometimes without drops. At night I now use ointment in both eyes and will usually but not always put a square of regular Saran Wrap over the non droopy eye, the one he thought might still be high. The lid surgery has made a huge difference. I see him again in March. I am not sure what if anything will be done on the droopy lid, which does not interfere with vision, not that droopy, or if he wants to lower the other one more. I have a feeling we will wait yet again. My muscle surgery needs to correct torsion also. My two side by side images are also tilted, which gives the brain a lot to try to correct. I live in the Cincinnati area so it is a five hour drive for us to Kellogg, well worth it but have to contend with winter weather. We try to schedule to avoid the worst weather months but a bit worried about late February; however, would be nice to be done with everything by summer!
Shirley, I am hoping since my ODs were a bit difficult, I will have your experience with the muscles.
in reply to: Terrified of Graves #1184152See a surgeon. They are the ones that ultimately treat thyroid cancer anyway. My surgeon did the only thyroid ultrasound I had, endo certainly did not. My TSH was not recordable at time of surgery and methimazole was increased in weeks prior to surgery to lower FT3 and FT4, so I would not count on TSH getting into normal range soon. My thyroidectomy was a piece of cake. Less than an hour in operating room, home two hours later. Only problem I had was fatigue next day from general anesthesia. So don’t fear the surgery itself. By the way, my surgeon prescribed my methimazole dose and ordered labs prior to surgery and managed my synthroid dose for first six months after surgery.
in reply to: Strabismus surgery…. #1184099I am scheduled for strabismus surgery at Kellogg Eye at the end of February. My bilateral ODs were not painful, but the double vision got a lot worse. It has since improved to just a few diopters from where I was before surgery. I had the lid retraction corrected before the strabismus surgery, which I had always heard was out of order, but turned out to be a real game changer in a positive way. Eyes so much more comfortable. As Fresnel prism is working for me, I am also very nervous about the strabismus surgery, even though I am having it done at a center that specializes in Graves eye disease. I totally understand what you are saying, Laura. I am functional now and I hate to mess that up even temporarily. I have waited so long to have the surgery, and now I am terrified it won’t work or will make my eyes uncomfortable again.
This study pretty obviously has some major flaws, but rather than my pointing them out (boxes of levothyroxine? Patient demographics?), I thought I would post an article from 2014, including comments by a Physician specializing in thyroid disease. Also I am sure you are aware that levothyroxine is chemically identical to the T4 your body makes.
“The Italian study was just published, and is titled “Levothyroxine and lung cancer in females: the importance of oxidative stress.” You can read the PDF of the study at the Reproductive Biology and Endocrinology website.
What the Italian study seems to be suggesting is that levothyroxine increases oxidative stress – a process that impairs the body’s ability to detoxify and repair damage. Oxidative stress is a factor in disease, and in this case, they found a small increased risk of lung cancer that could be — but is not demonstrated to be — due to oxidative stress from levothyroxine.
The lungs require thyroid hormone to function properly. Hypothyroidism is associated with a variety of dysfunctions in organs, glands and tissues. The researchers stated in their conclusions, however, that they cannot exclude the idea that the hypothyroidism itself may be a contributing factor to an increased risk for lung cancer, and not the levothyroxine used to treat it.
I asked Harvard-trained physician Richard Shames, MD, author of a number of books on thyroid disease, including the most recent Thyroid Mind Power, to comment on the study.
Having read carefully the original Italian research article, I am not impressed.
First of all I’m not impressed with the original Italian research paper. This was the most simple and bare-bones correlation of total amount of levothyroxine sold in Italy with the total number of women in Italy who have lung cancer. Such gross correlations do not necessarily have anything to do with “cause.” The authors implied that the correlation has something to do with levothyroxine somehow causing lung cancer, but this research is far from actually showing it.The blogger suggests that patients should choose a more natural approach to treating low thyroid, or at least use some alternate medicine other than levothyroxine.
With little research, we don’t know whether that might also ’cause’ cancer, either from the same issue of oxidative stress or from some other unproven reason.
The research focuses on “oxidative stress.” First of all, it is far from clear that the most common low-dose treatments with levothyroxine are themselves a major cause of oxidative stress. Second, it is far from clear that oxidative stress is a major cause of lung cancer. Third, it is even further from clear that avoiding levothyroxine treatment will help prevent this highly unlikely lung cancer cause.
Basically, this cancer discussion is best put way on the back burner until more and better research is in.
As much as I might agree with the idea of not always using levothyroxine alone, I cannotsupport the findings as a rationale for that conclusion. Moreover I believe it is a disservice to the public if “levothyroxine causes lung cancer” is used as a scare tactic, or as a reason for choosing alternative treatment for low thyroid.”
in reply to: Terrified of Graves #1184147Find a new doctor. There is no guarantee you will achieve remission in 2 years or 5 years or 10 years. Less than 50% achieve remission, and of those, lots relapse. You might consider a consult with an ENT surgeon who does thyroidectomies for Graves.If you are here in the US, and your insurance allows it, maybe you could seek an endocrinology consult at a teaching hospital somewhere within a reasonable distance of your home. In the meantime, do some research. PubMed is a good start online where you can read abstracts of peer reviewed journal articles about latest Graves research and treatment. I made the mistake of trusting my endo when I first was diagnosed. I bypassed her entirely and saw a surgeon. Up to you, but I would for sure look into all options. Endocrinologists want to treat with drugs, surgeons want to operate, radiologists go for RAI. It is up to you to consult all of them if necessary and make best choice for yourself.
in reply to: Terrified of Graves #1184144Not sure why you would have to wait two years to see if methimazole will bring remission. I had my thyroidectomy after 7 months, it was a choice I made based on a lot of research and medical professional advice. I wasn’t willing to mess around for years, patience is not a virtue I possess! I wanted to feel normal and get on with my life. It has worked for me but a lot of people are happy taking methimazole every day rather than Synthroid so you can choose that route if you feel it is best for you. For me, I take my Synthroid every morning and get labs every 6 months. It is the only medication I take. I have no hyper or hypo symptoms, follow no special diet, take no supplements, have no activity restrictions, am normal weight, etc. I have to keep my Synthroid on the coffee pot or I would forget to take it in the morning entirely, that is how much I think about my thyroid hormone levels. I understand your impatience. I wasn’t willing to feel bad or not myself for any length of time.
in reply to: Terrified of Graves #1184140You are anxious partly because of your out of whack thyroid levels. This will settle down. Yes, it is scary but you will get through it. The methimazole works to get your T4 down. I chose total thyroidectomy (which was definitely NOT a terrifying experience) and I feel completely normal. I had the most severe eye disease and even that is mostly treatable with corrective surgery. There is a lot of research being done but because this disease affects such a small population, it isn’t as well funded as, for instance, breast cancer. Hyperthyroidism is always curable with thyroidectomy (99.5%) if the methimazole causes problems and lots of people are taking replacement hormone (synthroid) for hypothyroid or after thyroid cancer thyroidectomy and leading totally normal lives (like Brooke Burke-charvet and Sofia Vergara). This is not a fatal disease, except in the very rare instance of thyroid storm. The eye disease is pretty rare and if I didn’t have that, I would forget I have Graves. Once the methimazole starts working, you will settle down and can then decide what you want to do. There are options. As for thyroid cancer, it is very slow growing and treatable, you do not have to be in a big hurry to find out about that. No one wants to do any kind of surgery until your levels are down. You will feel better fairly quickly. You certainly can return to your normal life. I felt like you do, having never been sick a day in my life until the Graves diagnosis. It is an adjustment but you do not have to feel unwell. It is just a matter of finding which treatment works for you. Hope this helps.
in reply to: Graves Disease Surgery TT #1184130Life post TT is totally normal. Take your pill in the morning, get labs every six months to a year and you are good to go. Takes a couple of months to get the perfect dose but an experienced surgeon knows pretty much what dose to start you on and then it is a matter of fine tuning within the normal range. My only regret is that I waited seven months on methimazole before having the surgery. Wish I had had it at the very beginning. Make sure you have a surgeon that does a lot of them so he is able to safely remove all of your thyroid without leaving remnants. That’s it. If I didn’t have the eye disease, I would totally forget I have Graves.
in reply to: Thyroid related eye disease not curable ? #1184115Some people with mild thyroid eye disease do improve with no treatment but people with severe or moderate disease usually need medical or surgical treatment. The best advice I can give you is to find an ophthalmologist with a lot of experience with Graves and this might mean a neuroophthalmologist or an ophthalmic plastic surgeon. My disease was severe with optic neuropathy which is vision threatening. I had steroid infusions weekly for 12 weeks, oral steroids, orbital radiation (not RAI), and total thyroidectomy. After it stopped progressing for some months and was deemed burned out, I had bilateral orbital decompressions and lid surgery. I am awaiting muscle surgery for double vision. I am lucky I am receiving my eye care at a center known for its Graves ophthalmology care and my eyes are slowly getting back to normal. It does get better, but it takes time, patience and expert medical care helping you with your decision making. Hang in there. This is a relatively rare disease and new therapies are being tested all the time. Good luck!
Here is the study about antibodies after TT, TT followed by radiation to kill any thyroid remnants, and methimazole. Methimazole is Group 3, which showed a much later and less marked antibody improvement. RAI alone was not studied here.
Endocrine. 2012 Apr;41(2):320-6. doi: 10.1007/s12020-011-9559-x. Epub 2011 Nov 16.
Time course of Graves’ ophthalmopathy after total thyroidectomy alone or followed by radioiodine therapy: a 2-year longitudinal study.Clinical study of ophthalmopathy and measurements of TRAb and G2sAb were performed in all patients at start of the study (time of TT for group 1 and RAI after TT for group 2 and of the first finding of euthyroidism under methimazole treatment for group 3) and after 6, 12, 24 months. Patients of both groups 1 and 2 showed an early significant decrease and a further progressive reduction of the activity and severity of GO with a disappearance of TRAb and a decrease of G2sAb levels during the follow-up, without statistically significant differences between the two groups. Patients in group 3 showed a much later and less marked improvement of GO with persistence of TRAb and G2sAb positivity, even if with reduction of TRAb levels at 12 and 24 months. Our results suggest that in Graves’ patients with large goiter or relapse of hyperthyroidism and mild/moderate GO, TT alone could be an advisable choice to treat hyperthyroidism also improving GO with reduction of cost/benefit ratio.
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