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in reply to: Men With Graves’ and TED #1187079
Hi all – dusting off this old thread to hopefully encourage some of the gentlemen on this forum to take our new survey, as we want to make sure we are capturing experiences from our entire patient community. The survey addresses your satisfaction with treatment options, your trusted sources, quality of life, whether your endocrinologist informed you about thyroid eye disease – and more!
https://survey.us.confirmit.com/wix/p141208987956.aspx?cn=1033&l=1033&sam=0&resp_id=OI&ap=19
in reply to: Share your Success Story! #1187046Hello – Sorry for the tardy reply…I didn’t get a notice to approve the reply. (After your first post, other posts/replies show up automatically).
Liver enzymes are tricky, as hyperthyroidism itself can cause liver issues, but as you know, it can also be a side effect of the meds. Hopefully, your doctor has discussed risks & benefits of all the approaches with you and is helping you figure out the best approach for your situation. You might also check out our Facebook group if you’d like to see if others have had a similar dilemma. From FB, search for GDATF, select “join group” and answer the new member questions. Take care!
in reply to: Failed radioiodine, was assaulted the same day #1187043Hello – I’m so sorry that happened to you. How scary! RAI can fail, even without trauma to the thyroid, so it’s difficult to say if the RAI would have been successful otherwise. You might also check out our Facebook group to see if others have had similar experiences. From Facebook, search for GDATF and then select “Join Group” and answer the new member questions. We’ll get you approved within one business day. Take care!
Hello and welcome – This forum isn’t super active, so you might also want to check out our closed Facebook group. (Visit Facebook, search for @GDATF, click “join group”, and then answer the new member questions when your notifications light up.)
It’s possible for hyperthyroidism to recur post-RAI if there was tissue left behind, but it’s also not uncommon to need a dose tweak over time (for example, if you experienced a significant amount of weight loss.) Hopefully, the endo will be able to shed some additional light.
in reply to: Personal Introduction #1186999Hello and welcome. The most common demographic for Graves’ disease is women age 30-60, but it can occur at any age. Even children and seniors can get Graves’!
This forum isn’t super active, but you can also check out our Facebook group if you are interested. (Do a search for @GDATF, click “join group”, and then answer the new member questions. Your membership should be approved within one business day.) Or we also do Zoom support groups – email us at info@gdatf.org for details.
in reply to: Journey Advice #1186984Hello – Hopefully, the second biopsy will be able to give you more direction than the last one. The waiting game is such a challenge! This forum is a bit of a ghost town, but I know that on our Facebook group, we have members who can share their personal experiences. If you are on Facebook, do a search for @GDATF and select “join group”. There’s another organization that is specific to cancer called ThyCa: Thyroid Cancer Survivors’ Association, Inc., and they should have some good resources on testing and interpreting results. Take care!
Hello – weight gain for sure can be a challenge for some patients, regardless of treatment option. Keeping a food log can be helpful, as well as returning to activity once your doctor gives you the OK. Are you currently on antithyroid drugs and looking for definitive (permanent) therapy? You might also visit our Facebook group, as that is more active than this one. Go to Facebook, search for @GDATF, click “Join Group”, and when your notification button lights up, answer the 3 new member questions and agree to the group rules.
in reply to: Hair loss with Graves disease #1186966Hello – Hopefully, you will see some relief from the hair loss once levels are both normal and stable (not swinging high/low). You might pose this question in our Facebook group, as that tends to be more active. (Go to Facebook, do a search for @gdatf and then select “join group”). You will get a notification to answer our new member questions plus agree to the group rules.
Hello and welcome – we are fellow patients not doctors, but one thing to note since you mentioned that you were having a relapse is that hyperthyroidism itself can affect the liver. This forum doesn’t get a ton of activity these days, but if you are on Facebook, we have a closed group where there are many members who had surgery or RAI and they are happy to share their experiences. Go to Facebook and search for @GDATF and then click “join group”. Be sure to answer the new member questions. We usually get requests turned around within one business day.
in reply to: Journey Advice #1186813Hello and welcome – we’re fellow patients here, but in general, nodules are VERY common. They only become a problem if they are suspicious for malignancy (the vast majority are benign) or if they start overproducing thyroid hormone, which can cause symptoms of hyperthyroidism. If your insurance will cover, asking for antibodies specific to Graves’ might be helpful (TSI or TRAb). There’s also a more involved test called a radioactive iodine uptake & scan that can show how your thyroid is taking up iodine, which can also provides some clues on the cause.
Regardless of the cause, a good question for your doc would be whether they will recommend treatment now – or if they will wait to see if your T3/T4 go out of range.
in reply to: Men With Graves’ and TED #1186800We received a call from a male Graves’ patient looking to talk with another male patient age 30-45. If you might be willing, please contact us at 877.643.3123 or info@gdatf.org. Thanks!
in reply to: Post Rai Euthyroid > Graves relapse > Hypo #1186769Hello 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!
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