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in reply to: trying for a baby after TT, Graves disease #1186485
Hello and welcome – you might also visit our Facebook group (search for @GDATF) as that one tends to be more active than this forum. That’s a puzzle with the high T4 but normal TSH. Usually, it’s the TSH that goes out of range first when things are out of balance. Have you had antibodies tested recently? (TSI, TPO, TRAb) We don’t fully understand their impact on fertility and pregnancy, but it might shed some light as to what’s going on.
in reply to: Anyone experience this?? #1186461Hello and welcome – this group isn’t super active, so you might also post this in our Facebook group to get some additional feedback.
https://www.facebook.com/groups/1419773924748394
It’s very rare for Graves’ to recur after surgery, but can happen if there is living tissue left behind. These days, most surgeons do a total (or near-total) thyroidectomy to reduce this risk. It’s more common that a dose change with thyroid hormone replacement might be needed over time. Has your doctor reviewed your labs and made any recommendations regarding doseage? If you are starting to see eye symptoms crop up, definitely make an appointment with an experienced ophthalmologist – and make sure they know about your history of Graves’.
in reply to: Free Webinar on Clinical Trials! #1186458If you missed yesterday’s webinar on Understanding Clinical Research co-hosted by GDATF, Immunovant, and CISCRP, you can watch the program in full here: https://youtu.be/IVHnnasEZCQ?si=WKUIw3zfdkc26vNZ
in reply to: Recurring low (high) TSH labs 13 years after RAI #1186448Hello – Ultimately, your doctor will need to help you sort this out, but there are a few possible reasons. If your thyroid wasn’t completely destroyed by the RAI (which is the goal with RAI these days, as they don’t want any thyroid tissue left behind), it’s possible for the tissue to regenerate, or for more tissue to be destroyed over time. But it could also be other factors – aging, weight gain/loss, changes in how you take the medication (time before breakfast, waiting 4 hours for iron/calcium supplements, etc.), or changes in the formula that affects your absorption (especially for generics if your pharmacy starts using a different manufacturer).
in reply to: Graves’ Disease Awareness Webinar! #1186418UPDATE: If you missed the program, you can view it here: https://youtu.be/HDPiQN8d39s?si=H8RN9ydDhYtGUaRg
in reply to: New to Graves / Hello Everyone #1186410Hello and welcome – this forum has been quiet of late, but you can also check out our Facebook group at: https://www.facebook.com/groups/1419773924748394
Treatment decisions are very individual – antithyroid meds, radioactive iodine, and thyroidectomy all have risks and benefits. If you feel that thyroid removal is right for you, don’t be afraid to speak up or to seek a second opinion. A consultation with an experienced surgeon might also be of value. The catch with surgery and RAI is that you don’t get a do-over if you change your mind, so you want to have a high degree of certainty that this is the option for you!
Hello – Yes, some patients do report getting an early diagnosis of Hashi’s before flipping to Graves’ (or vice-versa). Hopefully, your doctor has you doing regular labs to ensure that the dose of methimazole is correct and that you aren’t flipping the other direction again. It can for sure require a delicate balancing act with meds if you are dealing with both.
in reply to: Insomnia & Anxiety #1186401Sure wish we had a better answer for this – in a recent Zoom support group, about half of participants struggled with getting restorative sleep. It’s worth looking at sleep hygiene (limiting screen time before bed, NOT using the bed for TV, emails, etc., having a bedtime routine, etc.) as well as finding help if you can for the anxiety issues – which is like throwing gasoline on the insomnia fire. You might also consider joining our Facebook group, which tends to be a lot more active than this forum. Look for us at Facebook/GDATF and select join/visit group.
in reply to: Patient Event in New Haven, CT #1186392Reminder: this event is one week away!
in reply to: Zoom Support Groups #1186391Update: we’ll be closing the poll at the end of the day today (Thursday). Stay tuned for confirmed dates and registration info!
in reply to: Men With Graves’ and TED #1186388Hello and welcome – This forum (and this thread in particular) has been a bit slower of late, but you might also be interested in our groups on Facebook and at onegravesvoice.com.
Some patients do get treated with orbital radiotherapy, which can provide relief from swelling and double vision. A couple of caveats are that patients with diabetes should use caution, and also there is typically a “lifetime limit” of this type of radiation, due to a theoretical risk of developing tumors. You can read more in this document by doing a search for “radiotherapy”.
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.
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