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in reply to: Finally good numbers after 5+ years treatment #1170893
Thank you for sharing your partner’s progress Harpy! I was wondering if you’ve ever had trouble with your partner’s T4 or T3 going too low during this long period of PTU medication? Based on my thyroid levels I could likely stop methimazole now but based on my antibodies it would be a bad idea, my doc will not consider adding replacement.
in reply to: theory for one sided TED #1179979Thanks for your responses! Looks like so far we have two votes for proptosis on the sleeping side one one for not. Not enough for a definitive study result yet…
in reply to: mental and cognitive effects – article #1179860Oh yeah 5mg is a big reduction – if it were me it would take at least six weeks to adjust to that reduction and see where things were at. It’s really amazing how powerful methimazole actually is. Just for me I can only tolerate very small dosage changes spaced far apart.
in reply to: mental and cognitive effects – article #1179858Oh am I with you Butterfly! Thanks for posting this link – I’ve come across it before and it is one of the best compilation of quotes of studies about the psychological impact of GD that I’ve ever seen. It is quite sobering. I am experiencing the same problems you are and I’ve been “euthyroid” for a year now. My endo told me it can take even a year for the body/mind to catch up even after you achieve remission and get off the medication but that full recovery does happen.
Also 20mg of methimazole a day is pretty high for a maintenance dose. Is it possible to check with your endo to make sure you are not hypothyroid now according to your FT4/FT3? Cognitive slowing/memory issues are symptoms of that. Still I’m mid-range now and on a tiny dose and having issues.
in reply to: Graves and school? #1179819Randistuart, I just asked me endo about a related issue because I’m still having working memory issues. I try to remember to do something and forget about a few seconds later sometimes. She said she has seen people have lingering mental and other effects even up to a year after getting off all medication. So it’s entirely possible your son might need a little leeway.
in reply to: Disadvantages of not having a thyroid? #1179832I think the biggest risk of not having a thyroid would be if you are a poor converter of T4 to T3 and don’t have access to a good selection of endocrinologists. Most people who seem unhappy and feel hypothyroid after their TT’s have trouble with their T3 values staying too low even when their synthroid is increased because of conversion issues. It seems more and more doctors are prescribing T3 though, so it’s not mission impossible to find a doc who is wise to this issue. Good luck tomorrow!
And Boomer, that thyroid in a jar would sure be a good conversation starter! Perhaps good to take on dates.
in reply to: eye question #1179756I’ve got the brownish discoloration too, looks a little like faint eyeshadow but the part that looks oddest is directly on the outer corners to the side. It is faint though and sometimes I put liquid make up over it when I’m doing the rest of my face. The discoloration appeared at the same time I started having the occasional pains behind the eyes. Fun fun fun.
in reply to: Teenagers with graves disease? #1063635Dear Girl, please know you can talk here – no one will tell you that you are whining, complaining, seeking pity. It sounds like someone in your life has been warning you of that so you keep it all in? There are people in the world who do manipulate others for sympathy over every hangnail, but you are clearly not one of those people. You do deserve support and care and nothing is wrong with talking about how you are feeling and what you are dealing with. Graves’ is a very hard disease to have mentally as well as physically on just about anybody. There’s been quite a few people lately on this board having TT’s (total thyroidectomy surgery) and it might ease your fears about surgery to read their stories.
in reply to: Perhaps a stupid question about TSH but… #1179721Some find that becoming hypo leads to the Graves’ antibody activity increasing which then lowers the TSH. In my case there was a new dip in TSH after it had recovered as my FT4 neared the bottom of the range and as I developed some hypo symptoms including new eye puffiness so I think there may be something to it.
in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179594Good luck to you Karen! Sending lots of healing thoughts your way for a smooth and successful surgery and recovery.
in reply to: orbital decompression #1169720Hope1, your incredible bravery is really inspiring. Sometimes I get scared at what I’m dealing with and then I read stories like yours and feel inspired to find my courage and face all this with more resolve. I wish you ever increasing healing!
I looked back in the history of your story a little bit and was wondering what ever happened with your thyroid? Did they miss part of it in the original surgery and that’s why you remained hyperthyroid? Did you have to get a TT done again?
Congratulations on doing so well! And now for this endo…there is a study somewhere about people maintaining their remission if their TRab is low enough when they stop the methimazole. Maybe someone here will have the link handy. Do you think your endo would be open to seeing it? My endo won’t do TRab testing but will do TSI and my antibodies are still kicking even though I’m on less methimazole than you are. I don’t want to go through this all over again either!
in reply to: Helpful advice is appreciated! #1179492I’ve had nausea with hypo when I’ve eaten too big a volume of food or too much high fat food – it’s like it weakens the digestion. Think about the opposite extreme with hyper – what couldn’t you eat and have it digested instantly? I’m sorry all this is going on for you so young, but there’s definitely room for improvement. Keep at it and second opinions aren’t a bad thing.
in reply to: muscles overtightening #1179513Thanks everybody! I’m due soon for blood work, so maybe something will come up. I’ve been on the low side of the normal range for FT4 for quite a while these last months so maybe…
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