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  • Kimberly
    Keymaster
    Post count: 4294

    Hello and welcome – we are fellow patients here, but there are a couple of issues to consider.

    One would be if you lost a lot of weight prior to this issue, as it’s possible the dose just needed to be reduced.

    Another is that if there was some thyroid tissue left after your RAI, it’s possible for the thyroid to regenerate and cause a recurrence of hyperthyroidism. Many years ago, the thought with RAI or surgery was that you could remove exactly the right amount of tissue so that the patient wouldn’t be hyper or hypo and wouldn’t need meds. But it proved nearly impossible to find the “Goldilocks” dose – patients either went hypo anyway, or they ended up having a recurrence of hyperthyroidism. These days, doctors either give a “fully ablative” dose of RAI to kill off the whole thyroid or remove the entire thyroid via surgery.

    That’s good that your doctor is monitoring this closely. Hopefully it will just be a matter of reducing your meds in accordance with your labs, but if you do end up hyperthyroid again, you have the same three treatment options available to you – RAI, surgery, or antithyroid meds.

    Take care – and keep us posted!

    Kimberly
    Keymaster
    Post count: 4294

    Thanks for the update, gatorgirly! Sorry that you had to deal with this after all you’d already gone through with TED, but that is great news that the surgery went well!

    Kimberly
    Keymaster
    Post count: 4294

    For any of our newer members who are reading this thread for the first time, I feel I should add that the contentious posts in threads like this are the reason we now have forum guidelines in place that everyone must review and agree to before making their first post and then every 90 days or so thereafter.

    We lost a lot of regular members – as well as some facilitators – while this was going on. :( Fortunately, for the last couple of years, nearly ALL of our posters been able to express differing opinions while still being civil and respectful.

    Kimberly
    Keymaster
    Post count: 4294

    Hello – I commented on the other thread, but I don’t think that the 53% statistic (for RAI) that was posted on another website is correct. (EDIT: See my comments on the other post – I think I tracked down the study they were talking about, and the increased risk was for patients treated with RAI for overactive nodules).

    I know that there are others here who are survivors, and I hope they will chime in with their experiences.

    When it comes to making treatment decisions with Graves’, all we can do is look at the risks/benefits of ALL three treatment options, and make the best decision we can with the information that was available at the time.

    It looks like we were diagnosed with Graves’ at around the same time, and surgery was never discussed with me as an initial treatment option – however, we are seeing more patients now go this route from the beginning, rather than pursuing antithyroid meds (which I took for 7 years) or RAI.

    Wishing you all the best.

    Kimberly
    Keymaster
    Post count: 4294

    Hello – I did find the 53% statistic on a particular website (*not* the American Cancer Association), but they did not list a specific research citation. Normally, a credible cite will list the specific study where their statistics came from, so you can verify for yourself.

    Interestingly, there was some research released just a couple of weeks ago that found women with a history of hyperthyroidism had an 11% increased overall risk of breast cancer. However, the study left many questions unanswered. For example, which treatment option for hyperthyroidism did the women select? (Since this was in Europe, my guess is the majority of patients received antithyroid meds or surgery). Also, how long were they hyperthyroid before receiving a diagnosis and treatment? In the meantime, the researchers recommend that “women with an overactive thyroid should stay in close communication with their doctors and follow routine breast cancer screening recommendations.”

    Should doctors be talking about this potential risk before patients make a final treatment decision? Yes, absolutely. But it’s important to note that all three treatment options have risks and benefits.

    I’m sorry that you are going through this, and I’m hoping that other members here who are also survivors will chime in here with their experiences.

    EDIT: I tracked down the study where the 53% might have come from:

    http://onlinelibrary.wiley.com/doi/10.1002/cncr.22635/full

    However, the study noted that, “The hyperthyroidism was caused by Graves disease in 57% (1604) of patients and by nodular thyroid disease (toxic multinodular goiter or toxic adenoma) in 43% (1189). The patients with nodular thyroid disease were older (median age 67 years vs 57 years, P < .001), received a higher cumulative dose of RAI (median dose of RAI, 259 vs 222 MBq, P < .001), and were treated earlier (median year of the first RAI, 1976 vs 1991, P < .001), but were followed as long as those with Graves disease (median follow-up time, 9 years 10 months vs 9 years 2 months; P = .57). The overall cancer incidence was increased in the patients compared with the corresponding control group in both etiologic groups (Table 2). However, the risk of breast cancer (RR, 1.78; 95% CI, 1.07–2.95 vs 1.32; 95% CI, 0.79–2.20) and stomach cancer (RR, 2.38; 95% CI, 1.20–4.71 vs 1.31; 95% CI, 0.49–3.51) was increased only in the patients with nodular thyroid disease but not in those with Graves disease.”

    So even though this study excluded patients with thyroid cancer, it included patients with overactive nodules who received a higher dose of radiation than the Graves’ patients – and it looks like that is the group that had the higher risk of breast cancer.

    Kimberly
    Keymaster
    Post count: 4294

    Hi all – Even though the April 13th deadline has passed, there are still a few rooms available on a discounted rate.

    Del Mar Inn
    720 Camino Del Mar
    Del Mar, CA 92014

    (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

    http://www.delmarinn.com/ [delmarinn.com]

    The Del Mar Inn is several miles from Shiley, but the hotel will provide a shuttle at 8:30 a.m. and 5:30 p.m.. This hotel is two blocks away from the beach!

    The discounted rates are $99.99/night for a Garden View/Queen and $119.99 for an Ocean View/Queen for May 6th and May 7th. To reserve, call 858-755-9765 and ask for the Graves’ Disease & Thyroid Foundation Rate. Cancellations made less than 3 days before arrival will be subject to one night’s room charge.

    Kimberly
    Keymaster
    Post count: 4294

    Bumping this to the top for those who are new to the forum…and also for those who were newbies when this original thread was posted and might now be interested in becoming a WARRIOR!

    WARRIORS (names appear in orange) are patients who have “been there, done that” with Graves’ disease, thyroid eye disease, Hashimoto’s thyroiditis, thyroid nodules, or another related disorder. These patients have been long-term members of our forum, have (mostly) stabilized their thyroid levels, are willing to share their knowledge and experience with others, and serve as examples in upholding the GDATF forum guidelines. Life isn’t always perfect for our WARRIORS, but they have achieved a “new normal”, are moving forward with their day-to-day lives, and are ready to start reaching out to others.

    ONLINE FACILITATORS (names appear in green) are either WARRIORS and/or GDATF staff members. ONLINE FACILITATORS have the authority to enforce the forum’s guidelines by editing posts, deleting posts, removing links, locking down threads, or suspending/banning users. WARRIORS can one day move on to becoming ONLINE FACILITATORS if they choose to do so.

    Kimberly
    Keymaster
    Post count: 4294

    Hello and welcome – We are fellow patients here, not doctors, so we can’t give advice on dosing or medications.

    However, hopefully, those who have taken steroids can chime in with their personal experiences as to whether the meds made anxiety worse.

    Anxiety can come from having thyroid levels out of balance or from an underlying anxiety disorder – or both.

    This video from our 2012 Patient Conference in San Diego on “The Emotional Aspects of Graves’ Disease” might be of interest:

    (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

    https://www.youtube.com/watch?v=CB8_5rbCso8

    If you don’t see some relief soon, definitely contact your doctor’s office again for further direction.

    Take care – and keep us posted!

    Kimberly
    Keymaster
    Post count: 4294

    If anyone is interested in attending our May 7th patient education event, but the $10 registration fee is a hardship, please see this link for info on submitting a scholarship application. (The info is at the bottom of the article).

    (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

    http://gdatf.org/news/san-diego-patient-family-mini-conference-save-the-date-for-may-7th/

    The applications are due by Monday, May 2nd, and applicants will be notified by Wednesday, May 4th.

    Hope to see some of our forum members in San Diego!

    Kimberly
    Keymaster
    Post count: 4294

    Hello and welcome! Hopefully, others will chime in here with their experiences, but a few comments…

    1. Yes, hyperthyroidism *can* cause hives. Ironically, hives can also be a side effect of antithyroid medications, but if you had the rash before your diagnosis, you can rule that out! If you ever have a rash specifically on the shin that has a texture like an orange peel, that is a specific complication of Graves’ called pretibial myxedema and warrants a visit to an experienced dermatologist.

    4. My understanding is that you can keep breastfeeding with TT, but *not* with RAI.

    5. We have members here who have had successful pregnancies after both RAI and TT. However, there is a 6-12 month waiting period for conceiving after RAI. Also, be aware that antibodies can spike after RAI and can potentially be passed on to the fetus. This is a rare complication, but something that you should be aware of. Medical guidance recommends antibody testing for ALL women with a past history of Graves’ at around the 20-24 week mark, with a referral to a maternal-fetal specialist recommended if antibody levels are extremely high.

    Kimberly
    Keymaster
    Post count: 4294

    Hello and welcome – I have definitely heard of muscle/joint pain happening with hyperthyroidism, but hopefully, others will chime in with their experiences. You might also post a brand new thread with that in the subject line to get some additional feedback. I am working a conference today, but will come back and post the link with instructions for starting a new thread as soon as I can.

    Kimberly
    Keymaster
    Post count: 4294

    For those who are interested in attending our San Diego event, just a reminder that hotel reservations need to be booked by April 13th in order to guarantee the discounted rate for the Del Mar Inn.

    Also, the preliminary agenda is now available:

    (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

    https://gdatf.org/site_media/uploads/draft_agenda_may_7th.pdf

    Kimberly
    Keymaster
    Post count: 4294

    Wow, that’s frustrating to have to make an extra appointment – but glad that you found someone who is confident that he can get the surgery done right. Keep us posted!

    Kimberly
    Keymaster
    Post count: 4294
    in reply to: what do I do? #1184340
    newtograves wrote:
    the theratears is to relieve some of the eye symptoms I have the graves eye disease as well, it reduces inflammation which helps me see better and relieves the dry gritty feeling :)

    OK, got it – I was thinking that was the name of an oral medication, and couldn’t figure out what it was! It probably wouldn’t hurt to consult your doc now about that rash. For minor skin issues, doctors will usually let you keep taking the methimazole, although they might suggest an antihistimine. Either way, it’s good to keep your doc in the loop!

    Kimberly
    Keymaster
    Post count: 4294

    @hoffbri – Thanks for sharing your story. Hopefully, you are still under the care of a doctor who is checking levels periodically.

Viewing 15 posts - 436 through 450 (of 4,066 total)