Latest posts on GDATF forum :: Changes Coming to This Forum - Options for Online Support 2021-07-09T20:13:05-07:00133991Hi all - The GDATF will be transitioning to a new website soon, and the state of this forum is in a bit of flux. These 124,000+ posts will NOT be lost, but they might exist in a different format. I will keep everyone posted as we know more.<br/><br/>In the meantime, we currently have two other online forum options:<br/><br/><strong>GDATF Closed Group on Facebook</strong> (select &ldquo;Join Group&rdquo; in the top right-hand corner of the GDATF's Facebook page, and answer the new member questions)<br/><br/><a href=""></a><br/><br/><strong><a href="" rel="nofollow"></a></strong> (a collaboration between the GDATF, Horizon Therapeutics, and rareLife Solutions)<br/><br/>A million thanks to every community member here who has stopped by to share their own story and to everyone who took the time to reach out a hand or offer words of encouragement to a fellow community member in need. You all have been the heart and soul of this site for the last 2+ decades. GDATF :: What do you think of this theory? 2021-07-06T13:41:08-07:00133990From the American Thyroid Association regarding their guidelines:<br/><br/>&ldquo;The balance between benefits and risks, quality of evidence, applicability, and certainty of the baseline risk are all considered in judgments about the strength of recommendations (7). Grading the quality of the evidence takes into account study design, study quality, consistency of results, and directness of the evidence. The strength of a recommendation is indicated as a strong recommendation (for or against) that applies to most patients in most circumstances with benefits of action clearly outweighing the risks and burdens (or vice versa), or a weak recommendation or a suggestion that may not be appropriate for every patient, depending on context, patient values, and preferences. The quality of the evidence is indicated as low-quality evidence, moderate-quality evidence, or high-quality evidence, based on consistency of results between studies and study design, limitations, and the directness of the evidence. In several instances, the evidence was insufficient to recommend for or against a test or a treatment, and the task force made a statement labeled “no recommendation.” Table 1 describes the criteria to be met for each rating category. Each recommendation is preceded by a description of the evidence and, is followed in some cases by a remarks section including technical suggestions on issues such as dosing and monitoring.&rdquo;<br/><br/><a href=""></a> GDATF :: What do you think of this theory? 2021-07-06T13:39:03-07:00133989Hello - A reminder that I'm a fellow patient. This decision should ultimately be made between you and your doctor, taking into account your personal preferences and your medical history.<br/><br/>My personal experience is that I took antithyroid drugs for seven years. I was literally leaving for vacation the day after I got diagnosed, so my doctor sent me on my way with a prescription for methimazole. I responded quickly to the meds, so opted to *not* do RAI. After 7 years, I weaned off &amp; stopped the meds (under a doctor's supervision) and had two years of stable labs. Then over a period of 2-3 years, I went hypOthyroid and had to start taking replacement hormone. That's *not* the usual course of the disease - I believe it's only around 10-15% of patients. Side effects with ATDs typically occur during the first 90 days, with *one* exception - vasculitis - that can occur with longer-term use.<br/><br/>An old fashioned &ldquo;pro and con&rdquo; list can be helpful in sorting out your thoughts. When you read peoples' experiences on the Internet, keep in mind that the vast majority of people posting are those with negative experiences - *and* a lot of the sites out there are not moderated, so people can post less than credible information.<br/><br/>Sometimes, there are factors that will help you predict someone's reaction to treatment. For example, we know that patients with extremely high antibody levels, extremely high thyroid hormone levels, and current smokers are at higher risk for worsening of eye disease after RAI. But unfortunately, doctors can't predict every scenario. It's one of the things that makes Graves' so challenging.<br/><br/>I will dig up &amp; post the American Thyroid Association guidelines regarding quality of evidence. Where you find areas of conflicting recommendations, please discuss these with your own doctor, and rely on their expertise.<br/><br/>Reluctance to do RAI comes primarily from concern over worsening of eye disease - as well as some patients wanting to try for remission before choosing a permanent option. But other patients do go straight to RAI or surgery, and are happy with that choice. Again, ultimately, this is up to you and your doctor. If a second opinion might give you some piece of mind, perhaps your primary can try and get you a referral to another endocrinologist (although sometimes wait times can be long for new patient appointments.) GDATF :: Post-Tepezza Symptoms 2021-07-06T13:09:33-07:00133988Hello - Muscle cramps are listed as a potential side effect for TEPEZZA (TM). Hopefully, you've reported this issue to your doctor to get further direction. This forum doesn't get a ton of activity, so you might also consider asking this question over on <a href="" rel="nofollow"></a> (a collaboration between GDATF, Horizon Therapeutics, and rareLife Solutions) or in our closed Facebook group. (From Facebook, search for @GDATF and select &ldquo;Join Group&rdquo; in the top right-hand corner of the screen). GDATF :: What do you think of this theory? 2021-07-02T19:55:55-07:00133987Kimberly&mdash; on the 6-25 you wrote that ATA labels the evidence for ATD pretreatment before RAI as “Strong recommendation with low-quality evidence.” What does that mean? How do they label high-quality evidence? <br/><br/>Re doctors and treatment, you said&ndash;“ there are a lot of other issues that aren't fully settled, such as pretreatment with ATDs prior to RAI. “<br/><br/>I’m worried. A doctor said to take ATD before RAI to block possible Thyroid Storm, maybe serious. Said most people don’t have side effects from ATD, but I fear them from what I read. How to predict? <br/><br/>At least 1 study says ATD pretreatment NOT needed in many cases. <br/>Clip &ndash; NIH study&ndash; back in 2001. One of the authors is Dr. David Cooper of GDATF. Says&ndash; “The findings support the recommendation that most patients with Graves' disease do not require antithyroid drug pretreatment before receiving radioiodine.”<br/>And, in the past GDATF talk on RAI, Dr. Avram said ATD is ‘occasionally’ given pre- RAI. Not sure why occasionally.<br/><br/>Kimberly, I wonder what was your experience on Methimazole? I saw your post, March 2009, replying to question by ‘enough3’. <br/>You wrote: <br/>“I am on Methimazole, but I started creeping hyper again after my Endo and I agreed to cut my dose in half, because my levels had been steady for 6 months. So I understand your frustration!<br/>Hopefully, you can get a new set of labs soon and start to get things back on an even keel.”<br/><br/>I read ATD side effects increase with longer use. As pretreatment, what’s chance of side effects like rash, hives, joint pain, mouth sores, nausea? How bad? Some reviews on Everyday Health site are scary.<br/><br/>Since RAI has higher efficacy and less side effects, why do patients opt for ATD? Do they influence doctors, or do doctors influence patients?<br/>What posts to read here, pro/con?<br/><br/>I would worry daily about signs of ATD S.Effects &mdash;&mdash;white blood count, liver. If have sore throat or yellow in eyes, etc &mdash; you must call doctor right away. So,if stop pills, when do side effects stop? <br/><br/>I’m 79, TSH 0.008. no eye disease or neck lump. Have small benign nodule. My heart rate is raised –but not bothersome. <br/>I’m gaining back some weight&ndash;more energy now—and eating dairy I’d avoided to reduce iodine in food. Doctors said eat normal diet, and the GDATF person on phone said just don’t eat kelp and seaweed. <br/><br/>Why do some doctors seem to prefer ATD? Do some patients fear radioiodine, so tolerate side effects and relapse? How did you doctor explain it?<br/><br/><br/> GDATF :: What do you think of this theory? 2021-07-02T17:54:02-07:00133986Kimberly&ndash; loved your article &ndash; ‘Playing on One String - Day to Day Life With Graves'….re famous violinist Paganini’s broken violin strings and our dealing with Graves.<br/>Btw, I watched a PBS show called Now Hear This. A violinist visits EU towns where lived famous composers&mdash;Bach, Vivaldi, Mozart, etc &ndash; -he plays violin and tours the historic places with fellow musicians and also shows some old violins. <br/> GDATF :: Post-Tepezza Symptoms 2021-07-01T11:36:34-07:00133985Greetings!<br/><br/>First time poster here. I was diagnosed with Hyperthyroidism in 2018 and developed TED by mid 2018. I had radiation therapy as well as steroid infusions, both of which helped the TED symptoms but did not permanently fix anything.<br/><br/>My ophthalmologist recommended I consider the 8 infusion course of Tepezza, which was cleared by the FDA in, I believe, early 2020.<br/><br/>After researching as much as I could, I decided to proceed with the treatment.<br/>The infusions were unremarkable and I tolerated them well. My glucose did spike a bit, but it was transitory. I may have had a bit of hair loss, but, again, nothing terrible.<br/><br/>What did start to happen shortly after beginning the Tepezza were severe leg cramps at night as well as cramps in my right hand. This has persisted to this day, much less severe than when it first started, but painful and worrisome nevertheless. <br/><br/>I'm wondering if anyone else has experienced these cramps post-Tepezza, and what you may have learned about it.<br/><br/>Thank you,<br/>adp<br/><br/> GDATF :: What do you think of this theory? 2021-06-25T11:10:14-07:00133984Hello - We already had a user named &ldquo;Meredith&rdquo;, so I switched it to &ldquo;Meredith2021&rdquo;. Not sure why the registration date is being glitchy - I don't think I can change that on my end.<br/><br/>With Graves', some issues have wide agreement among doctors, such as no RAI if you are pregnant. However, there are a lot of other issues that aren't fully settled, such as pretreatment with ATDs prior to RAI. The American Thyroid Association guidelines that I mentioned earlier do recommend pretreatment for patients who are at risk of a worsening of hyperthyroidism - specifically the elderly and those with conditions like heart issues. However, they rank their recommendations according to the amount of evidence available, and this one was noted as &ldquo;weak&rdquo;. Ultimately, this is a decision that you and your doctor will need to make.<br/><br/>This is a presentation from a GDATF conference from around 10 years ago, but the basics should still be the same. (Other than we have more specific guidelines on when RAI should be used in patients with existing eye involvement.) <br/><br/><a href=""></a><br/><br/>Dr. Cooper notes in his presentation on long-term use of ATDs that the shift in the USA is largely patient-driven, from those who wish to make an effort to keep their thyroid. I also suspect that it has to do with heightened awareness of potential eye issues.<br/><br/>Again, ultimately, this is a choice that you and your doctor need to make. As the American Thyroid Association notes, &ldquo;Once it has been established that the patient is hyperthyroid and the cause is GD, the patient and physician must choose between three effective and relatively safe initial treatment options: RAI therapy, ATDs, or thyroidectomy&#8230;the treating physician and patient should discuss each of the treatment options, including the logistics, benefits, expected speed of recovery, drawbacks, potential side effects, and costs. This sets the stage for the physician to make recommendations based on best clinical judgment and allows the final decision to incorporate the personal values and preferences of the patient.&rdquo;<br/><br/> GDATF :: What do you think of this theory? 2021-06-22T14:04:52-07:00133983I 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. GDATF :: What do you think of this theory? 2021-06-22T01:28:35-07:00133982Kimberly. Thanks for changing my sign in, so no confusion with other person. How about changing my user name to Meredith&ndash; my 1st name. (ellen is my middle name) <br/>Also on my other post, why does it say &lsquo;Registered: 2020-11-08&rsquo;?<br/>I registered April 1, 2021, I think. Can we change it? <br/><br/>Your post was informative, and I'll read, or re-read, the ATA guidelines you cited. Is there a webinar on RAI that I can see? Maybe with Dr. Cooper in a past lecture. <br/><br/>Re which treatment&mdash;seems some doctors and sites say that if you do take RAI, you should still pretreat with ATD. But I saw other studies saying that's not needed, you can start with RAI. <br/><br/>Another poster, Liz, cited&mdash; <a href=""></a><br/><br/>The conclusion of the study: &lsquo;Patients using ATD have only a 50.3% chance of ultimately avoiding ablative treatment and only a 40% chance of eventually being euthyroid without thyroid medication.&rsquo;<br/><br/>And as you wrote&mdash;'RAI was the front-line treatment for Graves' in the USA. These days, ATDs are more commonly used in newly diagnosed patients.'<br/><br/>Yes, I've read the trend is changing toward more ATD. Why is this?<br/>And I'm interested why in Europe ATD has been more commonly prescribed. Interesting article on this in Endocrine News per the Endocrine Society: &ldquo;Transatlantic Differences Treating Graves’ Hyperthyroidism&rdquo;.<br/><br/>It quotes the writers of guideines for the professional organizations here and abroad&ndash;Dr. Ross and Dr. Kahaly. But it doesn't really go into the reasons for the difference. I checked the web but can't find. <br/><br/><br/> GDATF :: What do you think of this theory? 2021-06-18T16:39:49-07:00133981(Edited) Hello - Thanks for being flexible on the username to help us avoid confusion with our other admin! I changed it to EB2021 - but can change it to something else if you have a preference.<br/><br/>You hear different definitions of remission. The one from the American Thyroid Association is one year of normal levels with *no* medications - so that one wouldn't apply with RAI. Another definition is undetectable antibody levels, which you could eventually get to with RAI, although antibody levels tend to spike in the months following treatment.<br/><br/>I don't know when the presenter was treated with RAI, but it was at least prior to 2009, when I first heard him give a lecture at a GDATF event. Back then, RAI was the front-line treatment for Graves' in the USA. These days, ATDs are more commonly used in newly diagnosed patients. I've since heard him lecture several times, and he's not suggesting ATDs are &ldquo;better&rdquo; - just providing info on options.<br/><br/>All three treatment options have risks and benefits. The American Thyroid Association has a nice set of guidelines that include info on when patients might favor one treatment option over the others:<br/><a href=""></a><br/><br/>Those who choose ATDs either want an opportunity to try for remission - or they choose to continue on a low dose of meds. (The risk of side effects is lower with a low dose, and with one exception - vasculitis - the first 90 days are the highest risk time for side effects.)<br/><br/>Unless you have an obvious issue that prevents you from choosing one of the three treatment options (for example, docs will NOT recommend RAI if you are pregnant or of you have active, severe eye involvement) whatever choice you make in conjunction with your doctor is a valid one.<br/><br/> GDATF :: What do you think of this theory? 2021-06-17T13:57:40-07:00133980<a href=""></a><br/><br/>2019 study, another perspective on ATD treatment. Note especially the “conclusion” section. GDATF :: What do you think of this theory? 2021-06-17T12:32:48-07:00133979Hi Kimberly&mdash;thanks for your reply June 11. Per your advice I’ll update my screen name, ellenb. Do I just log out, and then re-register, or what?<br/><br/>Re treatment&ndash; you wrote: <br/>‘I suspect that what you've read is that RAI is successful in dealing with the hyperthyroidism, as opposed to bringing about remission from Graves'.<br/><br/>Could you clarify that? I’ve read that RAI does in fact cause remission from both H. Thyroid and Graves’. <br/><br/>And I have a question on GDATF’s interesting February webinar that you mentioned&mdash; ‘The Long Term Use of Antithyroid Medication’.<br/><br/>Two experts spoke on the advantages of anti-thyroid drugs as the best treatment&mdash;including Dr. David S. Cooper – professor Johns Hopkins, past President ATA, editor of endocrinology journals, etc. <br/><br/>They showed statistics that ATD was better than RAI, but also they showed that it led to actual remission in only 50% of cases. And said many patients prefer ATD, so doctors go along with patients’ preferences, if possible.<br/><br/>But the surprise was that towards the end of the webinar on ATD, Dr. Cooper said he himself took radioactive iodine (RAI) for his own Graves Disease. Said he’s doing fine, and he said so do most people who take it! <br/><br/>What did you think about that? I don’t get why Dr. Cooper would give a lecture promoting ATD, then tell us he used the other treatment, RAI, for his own Graves Disease.<br/><br/>GDAFT recently had an article explaining RAI advantages, written some years ago:<br/>“Treating Graves' with radioactive iodine&ndash; Treatment of Graves’ Disease by the “Atomic Cocktail” by Malcolm R. Powell, M.D<br/><br/>So why do patients or doctors choose ATD (Methimazole) with frequent relapse rates? And mainly, the side effects can be so much worse. <br/><br/>Also, some doctors say to use ATD as pretreatment for RAI. But, an article in Medscape Medical News said:<br/>Radioactive Iodine Can Be First-Line for Hyperthyroidism (in the UK)<br/><br/>Thank you for any feedback. It's a confusing matter. <br/> GDATF :: What do you think of this theory? 2021-06-11T15:52:54-07:00133978Hello and welcome!<br/><br/>First, do you mind if we work with you to update your screen name to avoid confusion with our admin, Ellen_B?<br/><br/>Hopefully, you will get some personal experiences here. You might also join our closed Facebook group, as that is a lot more active these days.<br/><br/>I suspect that what you've read is that RAI is successful in dealing with the hyperthyroidism, as opposed to bringing about remission from Graves'. The goal these days with RAI is to completely knock out all thyroid hormone production, so you *aren't* likely to have a recurrence of hyperthyroidism. All three treatment options have risks and benefits.<br/><br/>If you are considering antithyroid medications, you might be interested in this recent webinar that the GDATF hosted: <a href=";t=945s">;t=945s</a><br/><br/>Take care! GDATF :: What do you think of this theory? 2021-06-10T18:39:07-07:00133977Gianna&mdash;<br/>Hi, I'm trying to decide on treatment for Graves. <br/>Can you tell me&mdash; how was your radioactive iodine treatment? <br/>What side effects if any did you have? How did you tolerate it? How long did you take it for?<br/><br/>Why did you decide on RAI instead of anti thyroid drug, like Methimazole? <br/>And did your doctor discuss taking ATD before RAI as -pretreatment, which some experts recommend, apparently?<br/><br/>I keep reading that RAI is more successful at remission and with less side effects. Yet, a couple of doctors told me they use mostly ATD. I don't know if this is a trend or what. I may look for a new specialist. <br/>Any feedback from you on your experience is appreciated.<br/>