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in reply to: GDATF Holiday Schedule #1184925
Bumping…
Bumping…again…
in reply to: No weight loss after TT. #1184932Hello and welcome! I am also a former WW leader; I had to quit when I just wasn’t able to stay at my goal weight following treatment for Graves’. (I took methimazole for several years & then went hypo).
Perhaps others here will chime in with their experiences, but personally, I would think carefully about pursuing bariatric surgery – specifically, the surgical risk as well as the lifestyle changes that would be required afterward.
For myself, I am doing my best to stay active, be mindful, and eat nutrient-dense foods. (Of course, all of that came off the rails during the holidays…)
Take care – and please keep us posted on your decision!
in reply to: AFFECT OF METHYLPREDNISOLONE INJECTION ON TSH #1184927Hello and welcome – I’ve not seen any literature that says steroid therapy can affect thyroid levels, but hopefully, others who have taken steroids for thyroid eye disease can jump in here with their experiences.
This early in the process, you are hopefully getting labs done regularly – and if you start to feel symptoms changing before your next appointment, don’t be afraid to call your doctor’s office to ask for a new set of labs ASAP.
Take care – and please keep us posted on how you are doing!
in reply to: behavior problems and Graves Disease #1184930Hello and welcome – emotional issues *should* start to abate once levels are normal and stable. However, healing can take longer for someone who has gone undiagnosed for a while.
This video on the emotional aspects of Graves’ will hopefully be of interest, as well as these links from our website.
Wishing you and your wife all the best.
(Note on links: if you click directly on the following links, 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).
Video from Dr. Ira Lesser:
https://www.youtube.com/watch?v=CB8_5rbCso8&t=4sBulletins from GDATF website:
http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/
in reply to: GDATF 2016 Annual Appeal & Amazon Smile Program #1184881Bumping to the top!
Hello and welcome – the T3/T4 issue is very personal. Some patients report feeling best at a certain point in the range, based on analyzing their own lab results over time.
As for the TSI, that can fluctuate over time, and it’s not well understood exactly why. One study out of Europe (Laurberg et al 2008) found that antibodies were reduced significantly in the first 12-18 months after surgery. But these numbers were averages of everyone in the study, so individual results could vary.
Hopefully, others will chime in with their results after surgery. I went the methimazole route and went hypo* without surgery or RAI.
*edit: hypo set in after 7 years on meds and 1.5 years w/ no meds.
in reply to: Recommendations for services #1184897Hello – Hopefully, you will receive some responses here that are specific to your area.
If you are willing to travel, you might consider checking out the GDATF’s YouTube videos – we have some great info from a number of TED experts from all over the country.
https://www.youtube.com/user/GravesAndThyroid/videos
Wishing you all the best!
Kimberly
in reply to: Amazing Xiidra #1184892Thanks for the update! So glad to hear that you are finally getting good results. Interestingly, Dr. Raymond Douglas did a live Facebook chat yesterday and he mentioned that his patients had experienced better results with “light cauterization” than with punctal plugs for dry eye.
For anyone who is interested, you can go to Facebook and do a search for ” Thyroid Eye Disease Awareness & Education” for more info on Dr. Douglas’ practice.
Dr. Douglas is also planning to do a Q&A on this forum in January – more details to come!
in reply to: Off of ATD – How long can Graves remission last? #1184887Hello – This is an issue that is VERY individual. Some patients will enjoy an extended period of remission. Others will relapse, and this tends to be more common fairly soon after discontinuing the meds, so definitely be on the lookout for your old hypER symptoms to come back. Still other patients will end up going hypO, which is what happened to me.
Before I went off of methimazole, I was just taking 2.5 mg/per week, split up into 2 doses of 1/4 tab each. I had about 18 months euthyroid on no meds, and then I went hypo, so now I’m on replacement hormone.
So long story short, your mileage may vary!
UPDATE Dec. 9th: For those who would still like to participate, this survey will close on Sunday, Dec. 11th.
Hello – In general, patients who are on T3/T4 combination therapy will have higher levels of T3 and lower levels of T4 than patients who do not have thyroid issues.
However, every patient will respond differently to a dose change – so any potential changes should be discussed in advance with your doctor, with follow up labs done a few weeks later to ensure the new dose is correct.
Hello and welcome! With Graves’, it is possible to go from hyper to hypo, even without RAI or surgery. If you are feeling hypo symptoms (fatigue is a big one – also joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse), definitely check in with your doctor to get labs done, even if you are in between your annual appointments.
This happened to me, and I am still working on getting my dose of replacement hormone tweaked. But the sooner that you can catch it, the better.
Hello and welcome! That is a good question…it certainly makes sense that all of the hormones are interconnected, but I haven’t seen any research where methimazole dose needs to be adjusted based on monthly cycles.
We are fellow patients here, not docs, but I would certainly ask your doctor for his/her rationale as to why your dose should be dropped with your heart rate still high and labs not improving. Some patients are prescribed beta blockers to provide temporary relief from rapid heart rate and other symptoms, although this is not an option for everyone (such as patients with asthma).
A second opinion might be helpful as well. You can check out the “Looking for a Doctor?” thread in the announcements section of the forum to find a doctor near you.
Hope you can get some answers!
in reply to: Thyroid Return #1184856Hello and welcome – sorry to hear that you are dealing with this all over again.
It’s possible that the dose increase might have been a little too high for you and needs to be tweaked.
However, ff there is some tissue left behind after surgery or RAI, there *is* a chance that the thyroid tissue can regenerate and cause a return of hyperthyroidism. If that is indeed what is happening, you have the same three options as before – antithyroid medications, surgery, and RAI. One caveat is that there is some additional risk for a second surgery.
Blood tests – TSH, Free T4, T3, and antibodies (TSI or TRAb) should help shed some additional light on what is going on.
Take care – and keep us posted!
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