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in reply to: Take Our Survey on Thyroid Eye Disease! #1186360
FINAL UPDATE: Less than 24 hours to go – our survey on Thyroid Eye Disease closes on Friday, 7/29 at 5:00 p.m.. Eastern! If you started, but didn’t finish, you should be able to pick up where you left off if using the same device. Don’t miss this opportunity to make your voice heard! https://www.onegravesvoice.com/thyroid-eye-patient-survey/
in reply to: Take Our Survey on Thyroid Eye Disease! #1186359UPDATE: If you started our TED survey, but didn’t have time to finish, you should be able to pick up where you left off (if using the same device). The survey will be closing soon, so please share your experience with TED! https://www.onegravesvoice.com/thyroid-eye-patient-survey/
Hello – Also make sure that you have the normal (also called “reference”) ranges for each of these items. If a result is bumping up against the highest or lowest end of the range, some patients can be symptomatic. However, if all levels are normal, an endocrinologist will have much in the “toolbox” to work with, as we primarily have medicines to block thyroid hormone production (if you are hypER) or to supplement thyroid hormone (if you are hypO). Hopefully, this newest endo can help you put the puzzle pieces together!
in reply to: Men With Graves’ and TED #1186351Hello – I’ve seen some articles linking hypertension to autoimmune diseases, but haven’t seen research specific to labile hypertension. You might also consider joining the GDATF’s closed Facebook group (go to Facebook, search for @GDATF – and then click “Join Group”). That group tends to be more active, so you might get some more responses. Hope you can find some relief.
Hello and welcome – hopefully, you will get some replies here, but you might also join our closed Facebook group, which tends to be more active. We do hear of similar issues from other patients, but it’s not well understood why symptoms can persist. In the meantime, it might be worth it to check with your primary care doctor to see if there are any other medical issues that need to be addressed – it can sometimes be difficult to sort out what’s thyroid and what’s not!
Hello and welcome – Lithium in particular is known to cause hypOthyroidism, and I’ve read of occasional cases where it caused hypERthyroidism due to thyroiditis (inflamed thyroid). It might be worth asking for a stand-alone lab order of Free T4 and T3, as well as antibody tests (TSI and TRAb). The challenge, though, is that if antibodies are above the cutoff, but TSH, T3, and T4 all come back in the “normal” range, we don’t have treatments that specifically target the antibodies.
in reply to: Recurring T.E.D. #1186339Hello and welcome – I think that we connected via email, and it sounds like you have a good medical team around you – but hopefully, you will get some responses here. Options for a recurrence would include a second course of TEPEZZA, Gluco-corticosteroids (like prednisone), orbital radiation, or surgical procedures (in the inactive phase).
in reply to: Post Radioactive Iodine Treatment Symptoms #1186332Hello and welcome – We’re fellow patients here, but hopefully, you will get some additional responses. I’m not familiar with balance as a typical post-RAI issue, so would suggest reporting this to your doctor. Hopefully, others will chime in here as well. You can also join our Facebook group (go to Facebook, search for @GDATF, and then click “Join Group” in the top right-hand corner of the screen. That group is much more active than this one right now.
As you noted, it can take some time for the RAI to do its work, but if you start to feel hypOthyroid symptoms come one (fatigue, weight gain, cold intolerance, constipation, etc.), before your next followup appointment, definitely let your doctor know so that you can get labs done.
in reply to: Now what questions do I ask #1186329Hello – We’re fellow patients and not allowed to interpret labs, but in general, having TSH that is too low along with T3 & T4 that are normal is referred to as “subclinical hyperthyroidism”. Depending on your personal situation (age, symptoms, risk of heart complications), the doctor might recommend treatment or might take a “watch and wait” approach and retest in a few weeks to see if T3 & T4 are out of range. The antibody tests that are specific to Graves’ and TRAb and TSI (sometimes called TBII). Hopefully, you will get some clarity at your doctor’s visit – please check in to let us know how it goes!
Hello and welcome – hopefully, you will get some other responses here, but you might also check out our Facebook group, which is more active right now. (Search for @GDATF, then click “join group” in the upper right corner.)
Hyperthyroidism itself can come with digestive issues, but also note that patients with Graves’ are at risk for additional autoimmune diseases. There are multiple autoimmune disease that can affect the digestive tract, so a gatroenterologist might be able to help you pinpoint the cause and help you find the right treatment.
If you missed last night’s Facebook Live webinar with the American Association of Endocrine Surgeons – you can watch the program in full by clicking the link below. Many thanks to the AAES, to all of the presenters, and to everyone who attended & submitted questions! https://www.facebook.com/TheAAES/videos/265251878840483
Hello and welcome – we’re fellow patients and can’t give medical advice, but the first priorities will be to (1) see if your Free T4 and T3 are also out of range and (2) to narrow down a specific diagnosis, as that will affect your treatment options. Blood tests for Graves’ antibodies (TSI, TRAb) can diagnose Graves’, and there is another test called the Radioactive Iodine Uptake & Scan that can help distinguish between Graves’, the early stages of Hashimoto’s thyroiditis, and overactive nodule(s) if the antibody tests aren’t conclusive.
You might call & ask if you can get any additional required blood tests done AHEAD of time (if your insurance allows), so you can spend the time in the office discussing the results, instead of getting them over the phone or online.
in reply to: Post Graves Pregnancy #1186299Congratulations – and thanks for sharing your success story! I once heard pregnancy referred to as a “stress test for the thyroid”. So hopefully, your wife will be able to get back to her medication “sweet spot” soon.
in reply to: What do you think of this theory? #1185928From the American Thyroid Association regarding their guidelines:
“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.”
in reply to: What do you think of this theory? #1185927Hello – 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.
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 & 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.
An old fashioned “pro and con” 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.
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.
I will dig up & 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.
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.)
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