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in reply to: Need info for Radioactive Iodine Therapy #1185815
Hello – Sorry that you are dealing with this, but glad that this was caught post-thyroidectomy. Hopefully, you will get some responses here, but also check out thyca.org – they provide excellent credible information on all things thyroid cancer. They also have a free low-iodine cookbook. If you have the time and energy, suggest taking a whole day to pick a few recipes and freeze extra portions, as it’s harder to rely on convenience foods when going low iodine.
You might consult with your endocrinologist and an ophthalmologist as well to see if they have any concerns about thyroid eye disease. I’ve *not* heard of any issues with this with thyroidectomy+RAI – but it would be worth getting an expert opinion.
in reply to: Muscle spasms with Graves Disease #1185806Hello and welcome – would you be able to reach out to your thyroid surgeon? Muscle cramping *can* come with hypoparathyroidism, which can happen if the parathyroids are damaged during surgery. The effect is usually temporary. Here’s some additional info:
https://www.uclahealth.org/endocrine-center/hypoparathyroidism
in reply to: Muscle spasms with Graves Disease #1185804Wow, that is SO frustrating, but it’s good that you have a doctor who is willing to help you get to the root cause of these new symptoms. Please keep us posted.
in reply to: Graves Disease and Radioactive Iodine Treatment #1185720Hello – Hopefully, you have followup labs scheduled to see if the issue persists. TSH can be an early warning sign that T3 and T4 are headed out of balance, even if they are still in the “normal” range.
It’s not uncommon to need a tweak in dosing as we age – plus, the reformulation probably made things extra challenging. It would also be worth it to report these findings to the pharmacy in case others are having the same issue.
Did your doctor provide any guidance on the nature-throid? It’s a desiccated product like Armour. He or she might have concerns about starting you on a product with T3 (which is the more powerful and active form of thyroid hormone) with your TSH already suppressed.
in reply to: Feedback on Online Events for 2020 #1185813Hello – The first step would be to get a specific diagnosis of TED from your provider and a determination as to whether this is the right course of treatment for you. The next step would be going through your insurance company – and if they don’t cover, your doctor should be able to direct you to an assistance program.
in reply to: Feedback on Online Events for 2020 #1185811Thanks to everyone who completed our survey regarding future online programming! Our community members overwhelmingly preferred to have a series of 90-minute webinars, rather one full day (or two half-days) of online programming. Two new poll questions…
What topics would you like to hear about?
Twitter: https://twitter.com/GDATF/status/1291078496123412481
Facebook:
https://www.facebook.com/events/1642048682736535/permalink/2669476706660389/What is your preferred breakdown of presentations vs. Q&A?
Twitter: https://twitter.com/GDATF/status/1291079091077046272
Facebook: https://www.facebook.com/events/1642048682736535/permalink/2669478029993590/
in reply to: Feelings and emotions with Graves Disease #1185691@AZGravesGuy – Great to hear from you. Hope all is well!
Just to clarify, a TSH of 22 warrants an immediate consult with your endocrinologist or primary care doc (and a followup appointment to recheck labs), and not a dose adjustment on your own.
in reply to: Muscle spasms with Graves Disease #1185801Hello – Hopefully, others who have experienced this will chime in here. One thought would be to get levels checked if it’s been a while, as both hyperthyroidism and hypothyroidism are potential causes of cramping. However, there are other potential causes as well, so definitely mention this to your primary care provider or your endocrinologist.
in reply to: Graves Disease and Radioactive Iodine Treatment #1185718Welcome, Reah! You might also check out our Facebook group (you can search for GDATF) or our social wall at oneGRAVESvoice.com if you’d like to hear from other patients, as this forum is a little more quiet than the other two.
Hope all goes well!
in reply to: Treatment with Tepezza #1185776Great – be sure and answer all three questions when you join the Facebook group. If you don’t see all 3, you can email us at info@gdatf.org. (The questions are to confirm why you want to join, that you understand it’s a moderated group, and that you agree to abide by the group rules.)
Hello – We’re fellow patients here, so I would ask your doc about specific dosing instructions. My own doc’s instructions were more geared towards honoring the waiting period before breakfast, rather than recommending an exact time.
in reply to: RAI scheduled – having second thoughts! #1185794Hello – We’re fellow patients here, and this is a decision that you definitely want your doctor to weigh in on. Is there any chance that there’s an on call doctor while your own provider is on vacation? A few general comments…
1. An experienced opthalmologist can help you determine if you have TED, and if the TED is severe enough to either avoid RAI or do do a course of steroid therapy in conjunction with the RAI.
2. We’ve heard from many patients who have had successful pregnancies after RAI, but it *is* recommended that you postpone trying to conceive for up to a year after treatment. (Some docs say 6 months).
3. Most docs don’t recommend the LID for RAI treatment for hyperthyroidism – it’s primarily used for those undergoing treatment for thyroid cancer. A few docs do recommend this, though.
4. Research on thyroid cancer and RAI has been very mixed. Will include a couple of links below to different studies.
JAMA: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2737319?resultClick=1
ATA (summarizes a previous study) https://www.thyroid.org/patient-thyroid-information/ct-for-patients/april-2020/vol-13-issue-4-p-7-8/
in reply to: Treatment with Tepezza #1185773@Rollande – We have a few members of our Facebook group who have had TEPEZZA (TM) infusions, so you might be interested in joining. Do a search for @GDATF on Facebook, and then click “Join Group” at the top right of the screen.
@Polyphemus – Thanks for sharing your experience!in reply to: Need Coping Tips #1185797Hello – I see from the other thread that your doctor has recommended a dose adjustment, so hopefully, that will bring you some relief. It might take some tinkering with the dose, given your other medications, in order to find the “sweet spot” with all of them.
This video from Dr. Ira Lesser is one of our most popular, and will hopefully be of interest. We can also connect you with our Founder, Nancy, offline if you are still struggling. You can email info (at) gdatf.org or call us at 877-643-3123.
Hello – We’ve heard mixed messaging as to whether T3 needs to be taken on an empty stomach. (T4 *definitely* does). You might check with your doctor about this and also ask whether 4:00 a.m. is the best time for dosing – T3 is the more powerful and active form of thyroid hormone, and you might not want a large dump of thyroid hormone if you are going back to bed!
The prescribing info for generic T3 does have a section on antidepressants and drug interactions, so that would be worth a conversation with your doctor as well:
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