[jeff92]

#1184062

Thank you for these incredibly generous and detailed responses. I am overwhelmed by your kindness and thoughtfulness!

Jeff

[fishstix]

#1184063

Shirley –

Thank you for the information! I find it very helpful to hear about other people’s experiences. I’ve been to an ophthalmologist for two appointments now, one as an initial check, the next to review my MRI and recheck. Although he isn’t a neuro-ophthalmologist, he is familiar with Graves and did a thorough check of my double vision, my level of eye bulging (sorry long day, can’t remember the proper name of that measurement), color loss, etc. If the steroids don’t fix the issue they will send me to the neuro-ophthalmologist for next steps.

I agree with you, double vision is a game changer. Based on your description and others on this site, my situation sounds very mild. During times of stress or when I’m tired, it’s quite bad. But I know that over the 10 months I’ve had it now I’ve adjusted to it as well.

I’ve just completed infusion 2 of 12 and so far so good. The only side effects I’ve experienced is a metallic taste in my mouth and an upsurge in energy the night of infusion. The first week that translated into a sleepless night. This week I tried to work it off with a brisk long dog walk before bed which seemed to help.

In regards to my screen name, it’s a nickname I picked up in college thanks to my softball teammates and a terrible mispronunciation of my last name. It stuck, and is now a handy handle for the Internet world.

[snelsen]

#1184064

Yes, I was more hyper when on steroids, they are famous for that. I am a poor sleeper, anyway. I was bright eyed and bushy eyed 24/7. Walking your dog at night sounds like a wonderful counterbalance to the steroids! But it saved my vision.

That is a wonderful nickname. Wish I had one like that with an interesting history.

Shirley

[Liz1967]

#1184065

Here is the study about antibodies after TT, TT followed by radiation to kill any thyroid remnants, and methimazole. Methimazole is Group 3, which showed a much later and less marked antibody improvement. RAI alone was not studied here.

Endocrine. 2012 Apr;41(2):320-6. doi: 10.1007/s12020-011-9559-x. Epub 2011 Nov 16.
Time course of Graves’ ophthalmopathy after total thyroidectomy alone or followed by radioiodine therapy: a 2-year longitudinal study.

Clinical study of ophthalmopathy and measurements of TRAb and G2sAb were performed in all patients at start of the study (time of TT for group 1 and RAI after TT for group 2 and of the first finding of euthyroidism under methimazole treatment for group 3) and after 6, 12, 24 months. Patients of both groups 1 and 2 showed an early significant decrease and a further progressive reduction of the activity and severity of GO with a disappearance of TRAb and a decrease of G2sAb levels during the follow-up, without statistically significant differences between the two groups. Patients in group 3 showed a much later and less marked improvement of GO with persistence of TRAb and G2sAb positivity, even if with reduction of TRAb levels at 12 and 24 months. Our results suggest that in Graves’ patients with large goiter or relapse of hyperthyroidism and mild/moderate GO, TT alone could be an advisable choice to treat hyperthyroidism also improving GO with reduction of cost/benefit ratio.

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