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in reply to: Post Rai Euthyroid > Graves relapse > Hypo #1186769
Hello and welcome! I’m not sure about your timeline (guessing RAI in 2023?), but if there is living thyroid tissue left after RAI, it can regenerate – and hyperthyroidism can definitely recur. Dosing with antithyroid drugs can take some tweaking to find the right dose that will keep your levels normal. Has your doctor tested antibodies? I’m guessing you are overseas (as we use a similar drug, methimazole, here in the USA), but in the USA, it’s recommended that antibodies be tested before withdrawing antithyroid medications. If the antibodies are still raging, hyperthyroidism will eventually recur. Keep an eye on your symptoms, and call your doctor’s office ASAP if you feel the old hypER symptoms coming back.
This forum is a little quiet right now, but you might also want to pose this question in our closed Facebook group, as it tends to be more active. If you are on Facebook, search for @GDATF and select “Join Group”. Answer all 3 membership questions and agree to the group rules. We usually approve memberships within one business day.
Take care!
Kimberlyin reply to: General symptoms and potential remedies #1186764Hello and welcome! Hopefully, you will get some replies here, but most of the “action” these days is over on our Facebook group. If you are on FB, do a search for @GDATF and select “Join Group”.
You might also be interested in our monthly Zoom meetings – I’m just about to post a link to a meeting tomorrow, and we can also add you to our email list to get notification of future meetings.
Take care!
in reply to: Tips for staying cool and staying awake? #1186749Hello and welcome – this forum is pretty quiet these days, but you might also check out our Facebook group (when you are logged in, search for @gdatf), as you might get some additional responses there. Have you talked with your endo or primary about your symptoms? Fatigue and heat intolerance are classic symptoms of Graves’ (and sometimes symptoms do linger even after levels are normalized) but there can be other causes as well. (Ex: dehydration or certain meds can bring on heat intolerance, and there are sleep disorders like sleep apnea where you aren’t getting restful sleep when you *are* in bed.) Hopefully, your doctor can help you put the pieces together and get your quality of life back!
Hello and welcome (back)! Sorry for the tardy reply – this forum is much quieter than our Facebook group. I’ve not heard of that med and had to look it up! But it looks like it is beneficial for people who need their upper lids to lift – whereas many TED patients have the opposite problem. (The upper eyelid already being retracted too much). If you move forward with this, please check back to let us know what you think!
in reply to: trying for a baby after TT, Graves disease #1186485Hello 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”.
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