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If you missed the Graves’ Awareness Webinar, you can watch the program in its entirety on the American Association of Endocrine Surgeons YouTube Channel: https://www.youtube.com/watch?v=IpUK08-BXag
Hello – Good question! Are there specific symptoms that are troublesome?
Hello and welcome! Just a note that we don’t discuss alternative/complementary treatment options here, unless there is peer-reviewed research to provide some evidence of safety & effectiveness. You are *definitely* smart to ask your doctor about supplements, which can be toxic in larger doses and can also interact with other meds.
I’m a fellow patient, not a doc, but I do believe that it’s more common for patients to go off a beta blocker slowly rather than cold turkey to avoid “rebound” symptoms. Please make sure your doctor is aware of the issues with your heart still racing, despite levels normalizing and ask them for further guidance on the beta blocker. (Please don’t stop, start, or change med doses on your own!)
Hopefully, you will get some responses here, but our Facebook group tends to be our most active online group – from FB, do a search for @GDATF and then click “join group” (it’s in the top right on desktop, not sure about mobile) and answer the group questions (#1 has 3 parts – a,b,c).
Take care – and keep us posted!
in reply to: Men With Graves’ and TED #1186366Hello and welcome! Let us know if you have questions. This forum has been pretty quiet of late, but if you are on Facebook, we also have a pretty active closed group there as well as a social wall on onegravesvoice.com (a collaboration between Graves’ Disease & Thyroid Foundation, rareLife Solutions, and Horizon Therapeutics.) We have members on both sites who have experienced double vision, including some who have been treated with TEPEZZA.
in reply to: Take Our Survey on Thyroid Eye Disease! #1186360FINAL 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
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