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Hello and welcome – First of all, getting your levels stable is critical. In addition, making sure that you are practicing good “sleep hygiene” is important (for example, trying to go to bed and wake around the same time every day, giving yourself a break from electronics right before bedtime, avoiding alcohol/caffeine late in the day, etc.)
If that doesn’t help, you might consider talking to you primary care provider regarding a sleep study to see if that can shed any additional light on the issue.
Hi Klassey – There was not much interest for Orlando, but if you would like to do an informal coffee meeting, send an e-mail to info@gdatf.org, and we will set something up!
Bump…
A reminder to post your questions here regarding thyroidectomy. The American Association of Endocrine Surgeons kicks off this weekend, and surgeons will be answering patient questions via video!
in reply to: Doublevision not covered by insurance #1184997Hello – I think this is the article you were looking for:
(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/about/about-graves-disease/patient-education/whats-wrong-with-me/
Please do NOT settle for someone telling you that your symptoms are all in your head! Maybe it will take a second (or third or fourth) opinion, but don’t forget that YOU are the customer in this situation – and work to find a provider who will take your concerns seriously!
in reply to: Doublevision not covered by insurance #1184994Agree with Liz1967. Some insurers will deny decompression surgery as cosmetic, but it is NOT cosmetic. A good surgeon will be able to fight for you to get it covered.
I cannot think of ANY reason why an insurer would deny surgery for double vision!
bump…
in reply to: Ft4 drops after stopping methimazole #1184991Hello – Agree with Ellen and Flora. You might also ask your doctor about checking for antibodies – TSI (Graves’ stimulating), TRAb (Graves’ blocking + stimulating) and TPOab (inflammation marker, can also indicate Hashimoto’s thyroiditis).
I went hypo after stopping methimazole, but it took about 18 months – not a matter of weeks! Hopefully, you have a followup appointment scheduled soon to make sure you don’t slip too far into hypO.
in reply to: High naturethroid dose/.02 TSH #1184986Hello – Yes, the doctors prefer to see your TSH come up to the “normal” range, even if T3/T4 are OK. Did the doctor talk to you about adjusting your dose?
For those who have suppressed TSH, but normal T3/T4 and feel well at that dose, it can sometimes be a challenge to get the doc to leave the dose where it is. (Shirley on the forum has had this experience). But since you noted that you have the shakes, working with the doc to reduce your dose of the Naturethroid might make a difference.
I’m not a doctor, but 700 calories a day does NOT sound like enough to get all the nutrients that your body needs. I was on 1300 cal/day for a while, and I was tired and cranky, cranky, cranky!! Perhaps a consult with a nutritionist might get you on a better path.
Take care – and please keep us posted!
Kimberly
in reply to: low iodine diet and type 1diabetes #1184975Hello and welcome – ThyCa: Thyroid Cancer Survivors’ Association, Inc. has excellent information on the low iodine diet on their website:
(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://thyca.org/pap-fol/lowiodinediet/
The link above includes a free collection of recipes – if you have a couple of hours to spare, it might be helpful to prep and freeze some items advance. I did this when I followed the low-iodine diet prior to having my uptake scan (which not all doctors require, but mine did).
Hope that all goes well!
in reply to: dealing with Graves disease symptoms #1184961Hello and welcome! Hopefully, others will chime in, but I’ve certainly experienced those symptoms while hypER.
I’ve not heard of a connection with ibuprofen. However, I definitely have seen my levels get off-kilter during periods of stress.
Did your doc suggest a plan of action – like adjusting your dose of meds and retesting?
in reply to: Muscle weakness with normal levels #1184958Hello and welcome!
The muscle weakness is common with Graves’, but should continue to improve as your daughter’s levels get to a place where they are normal and stable.
Personally, I’ve had both knee issues and shoulder issues in the years since my Graves’ diagnosis, and I’ve heard anecdotal stories from others as well. I’ve also noticed a decrease in range of motion during this time, but I spend a lot of the day sitting, *and* I’m a lot older than your daughter!
I wish this was an area where we had more info, but some researchers are beginning to explore this connection; for example, here’s a piece on tendon issues and thyroid dysfunction:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3838329/
For more general info on Graves’ disease in children, check out the videos and playlists on our YouTube channel. There are videos from Dr. Scott Rivkees and Dr. Michael Gottschalk, as well as a playlist (on a separate “Playlist” tab) featuring several doctors from The Children’s Hospital of Philadelphia:
https://www.youtube.com/user/GravesAndThyroid/videos
(Note on links: if you click directly on the above 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).
Wishing you and your family all the best!
The presentation has started, but you’ll need to scroll down through several other posts to get to the LIVE footage. Gotta love Facebook…
Bump…this talk is starting over on Facebook in 5 minutes!
If you aren’t able to join live, the talk will be archived for future viewing.
in reply to: On ATD two years-plus? #1183793@scanders – I’ve heard of this issue occurring in kids, and one option that docs can use is adding in a small amount of replacement hormone.
But hopefully, you can get the MMI to the correct dose without needing to do this. Before I stopped taking the meds for good, I was taking 2.5 mg per week (1/4 of a tab twice per week).
Bumping…
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