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in reply to: RAI scheduled – having second thoughts! #1185794
Hello – 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:
in reply to: Thyroid regrowth after “total” thyroidectomy #1185768Hello and welcome – wow, that has to be incredibly frustrating to go through at 17. Graves’ *can* recur after thyroidectomy or RAI if there is living tissue left behind. This is a case study that appears really similar to your situation – where the surgeon specifically made the decision to leave a tiny amount of tissue behind in order to avoid laryngeal nerve injury.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6988647/
We are fellow patients here, so can’t tell you which choice to make, although hopefully, others who have had a similar experience will chime in. You might also check out our groups on Facebook (search for @GDATF and then click “Join Group” in the top right-hand corner) or on oneGRAVESvoice.com – as those forums tend to be more active than this one.
Hello and welcome! We’re fellow patients here and can’t give medical advice, but is there any chance that you could get an appointment via telemedicine with your primary? It’s true that hypothyroidism can actually push cholesterol higher – in fact, medical guidelines recommend that if someone has a brand new diagnosis of high cholesterol that you check their thyroid first to see if that’s the real problem! This might be a “watch and wait” situation to see if your TSH increases further, but it’s important to get advice from an expert.
in reply to: Getting regulated after thyroidectomy #1185760This is great news – thanks for the update!
in reply to: Getting regulated after thyroidectomy #1185758Hello – as Liz1967 noted, your body needs some time to heal, and you will need some time (a few weeks) to figure out if this dose of thyroid hormone replacement is right for you.
Thyroid dysfunction itself can mimic symptoms of depression or anxiety disorder, but sometimes there *is* another underlying condition that can benefit from separate treatment. This is an older video (link below), but one of our most popular on “The Emotional Aspect of Graves'” – hopefully, it will be of interest.
in reply to: Thyroid Cancer #1185754Hello – For patients who are considered low risk, RAI is not always recommended after thyroidectomy. Your doctor is the best person to help assess your risk and determine next steps. ThyCa (website is thyca.org) is a great organization that provides general resources on thyroid cancer.
Wishing you all the best as you recover from surgery!
in reply to: New to this and need advice!! #1185749Hello and welcome – The experience with methimazole is very individual. Many patients end up doing well on a low dose, while others experience side effects or have issues getting stabilized.
One thought is whether you got a definite diagnosis of Graves’ disease, as you can have elevated T3/T4 and suppressed TSH for other reasons. (For example, the early stages of Hashimoto’s or an overactive nodule.) Antibody testing (TSI or TRAb) can help point you in the right direction.
in reply to: Newly Diagnosed and not doing well #1184645Hello and welcome – You might also try the PM feature, as members don’t always check back here once they are feeling better!
This article might be of interest – it was written by someone who is a Graves’ patient herself, and also happens to be a teacher. It was written more for younger students, but some of the tips are good for students of all ages!
https://www.gdatf.org/about/about-graves-disease/patient-education/students-graves/
That’s a tough call to push through or delay, especially since having thyroid levels out of balance can affect both energy levels and concentration. Do you have a faculty advisor that you can talk to?
Hello – Looks like AZGravesGuy responded on your other post.
This info will also hopefully be of interest – it’s from the American Association of Endocrine Surgeons. (You will need to scroll down to see all the topics.)
https://collectedmed.com/index.php/directory/Coach_directory/articlelist/13075
Hello – The American Thyroid Guidelines note that: “We suggest that patients with overtly TMNG or TA be treated with RAI therapy or thyroidectomy. On occasion, long-term, low-dose treatment with MMI may be appropriate.”
You can read the full document here – the section on TMNG is about halfway down.
Hello – Most patients do see resolution of symptoms once levels are in the normal range, but this can take some time, especially if you were hypER for a while.
Some patients *do* have symptoms with suppressed TSH, even if T3/T4 are normal.
Insomnia is SO frustrating, so definitely mention this to your doctor. The more specific you can be, the better. Are you having trouble falling asleep because your mind is racing? Or are you waking up repeatedly? Or all of the above?
Also consider “sleep hygiene” – here are some tips from Cleveland Clinic:
https://my.clevelandclinic.org/health/diseases/12119-insomnia/prevention
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