[Melisma]

in reply to: TED symptom relief? Hot phase #1061380

Oops, I meant fluoroMetholone ophthalmic ointment (abbreviated on the tiny tube as FML, which is just hilarious to me). My "m" key seems to be a little shy these days. :0)

[Melisma]

in reply to: TED symptom relief? Hot phase #1061378

Hi all,

Just wanted to post an update. Saw the ophthalmologist a week ago. He didn’t diagnose it as GO, but said it looked like allergies to him. I disagree, but at this point I don’t think it matters; I think the treatment would still be the same. I haven’t been exposed to anything "new" in terms of allergens recently, so I don’t see what that would be. And both allergies and GO are immune system reactions, so it makes sense that they would look similar. Also, I’m in a relatively small community in a Midwestern state. How many cases of this relatively rare eye disease could my young doctor possibly have seen in his career so far? Probably not so many. I am grateful, but on the day I went in, my eyes didn’t look as "classic" GO as they did the week before.

In any case, He prescribed a steroid ointment (fluoroetholone ophthalmic ointment) to use 3 times/day that has been working really well so far. My eyes are still a little itchy, but not as often, and the swelling has REALLY gone down. The skin isn’t scaling off nearly as much as it was before either. I went back and looked at old pictures of myself so I could bring some in for the Dr. to see, and it’s been a long time since my eyes have been not puffy at all.

Anyhoo…I’ll see him again in two weeks, and finally have an endo appt in a week or two. Crossing my fingers that this all works out…

Thanks for the help so far, Everyone!

[Melisma]

in reply to: TED symptom relief? Hot phase #1061377

Hi Kimberly,
Thanks for the heads up on that. His website looks quite dated, which seemed weird to me. His explanation about the nutritional deficiency seems reasonably plausible to me, but I’m no biology major or nutritionist. It’s remarkable how strong the urge is to jump at any piece of information in the face of having a disease that is not fully understood.

This issue of figuring out what to eat or not to eat is pretty daunting.

Best,
Melissa

[Melisma]

in reply to: TED symptom relief? Hot phase #1061373

Thanks, Everyone, for the responses and suggestions. The skin on my eyelids is just so raw. I’m still hoping to find something that is just soothing and makes me go "ahhh…." when I put it on. I started using Aquaphor last night, which is okay, but it’s really just a fancier version of Vasoline. It’s keeping the skin from drying out, but it’s still itchy under all that goop.

Speaking of supplements, has anyone tried the Johnson Nutritional Protocol mentioned in Mary Shomon’s book, Living Well With Graves’ Disease and Hyperthyroidism? I just got the book from the library and am thinking about giving it a try. I’ll run it by my Dr. first, but was curious if anyone has had any experience with it.

[Melisma]

in reply to: TED symptom relief? Hot phase #1061368

Hi Kimberly,

Thanks for the reply. I know I probably get too much sodium. My diet has never been all that great. I guess I’ll be working on that from now on!

So the swelling is just part of the TED. I find during the hours when my eyes are going from close to normal to very swollen, my eyelids are struggling to keep up with making enough skin to cover the extra surface area. I’ve used just whatever eye cream I already had in my skin care regimen, but was wondering if anyone had a better lotion. Mine must have some alcohol in it because it burns a bit when I first put it on. In the days following, it’s like my eyelids are almost "molting" extra skin. It’s pretty gross, but not too much much different than peeling a bad sunburn. Has anyone found a good product for that situation?

[Author]

Posts