[Melisma]

#1017866

Hi Everyone, nice to meet you! Thanks for all the effort and support poured into this board. It’s great to know there are others out there with this. Tonight I’m wondering what y’all have done to relieve symptoms of TED in the hot phase.

About six weeks ago my eyes started to get really itchy and puffy. Due to insurance hell, and this being "pre-existing" and all that, I’ve not yet got an appointment with either an eye doctor or an endocrinologist, but will be setting them up soon. In the meantime, what do you do to relieve some of the acute symptoms with your eyes? Everyone who sees me in the hall at work asks if I have allergies, and even when I tell them no they recommend whatever eye drop they use for whatever their problem was. I don’t want to just start putting things in my eyes willy-nilly, but there’s got to be SOMEthing, hopefully to reduce the swelling. So far I’ve just been using eye cream (from the body shop) to keep the skin from getting over dry. It’s better than nothing, but there must be better options. Tonight I bought a cucumber and played "spa" with my eyes. It was nice for a few minutes, but no lasting relief.

Just some background…was diagnosed with Graves’ in Summer 2009, gradually had gotten it under control and had cut back on the Methimazole to 10mg 3 days/wk. Then lost my insurance in November, my prescription got messed up and I stopped taking anything in March. When my eyes started bothering me in June I started the Methimazole again, now 10mg/day. They seemed to be getting better the past few weeks but tonight they’ve gotten as bad as ever and I’ve no idea why.

[Kimberly]

#1061367

Hello and welcome – Unfortunately, I don’t know of any tricks to reduce the swelling…that’s part of the package that comes with TED. ” title=”Sad” />

One thing to consider: I had long suspected that sodium intake seemed to increase my swelling, but hadn’t every read anything about this. I attended a recent Q&A on TED, and that doctor actually recommended restricting sodium intake as a way to help with the swelling. Our bodies *do* need a certain amount of sodium to function, but it seems that going overboard *can* have an effect on our eyes.

[Melisma]

#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?

[jansm]

#1061369

I don’t believe there is a magic cream to help with the swelling. The issues created with Graves and TED are completely different from those for which most cosmetic creams and lotions are formulated. I did always continue to use my eye creams, but mostly because it was one small way for me to try and continue with what was my normal routine and life. Maybe the creams you are using are contributing to some of the swelling and itching? I would try eliminating them for awhile and see if the problems improve. Some anti-wrinkle creams are designed to slough away skin. The creams may be doing what they were designed to do, but may not be the best choice in your situation.

I had problems with my left eye swelling more than my right. Several of my physicians suggested not sleeping on my left side. That was difficult, as that is my normal sleeping position. However, I did find the swelling was less in my left eye when I avoided sleeping on that side. I also found sleeping with my head elevated helped with overall swelling. I normally noticed the swelling mostly in the mornings. It slowly decreased during the day, when I was up and active.

Since undergoing orbital decompression and strabismus surgeries, I continue to have a little swelling in the mornings. It normally disappears after I am up for an hour or so.

Artificial tears and cool compresses were my best solutions when my eyes were really bothering me.

[msmanatee]

#1061370

I had the same experience with side-sleeping and swelling, experimented with switching sides and the lower side was always more swollen. I now sleep almost sitting up straight but if my head keels over, the eye on that side looks like I got punched.

I’m afraid to put any kind of cream or cosmetic near my eyes but I go through a lot of ice cubes when they’re really HOT. The swelling does not go down but they feel a little numb and cool, which is better. I too notice that swelling recedes some the longer I’m up and about.

[Krisann79]

#1061371

I’m no Dr and I know it’s not popular to suggest suppliments (because it’s best to talk to your Dr) but I’ve actually found some relief in Brazil Nuts. Many people on the Facebook Graves board started taking Selenium suppliments which I refused to do because I am so afraid of messing things up w my levels (I’m just STARTING to be a normal functioning human again but still have problems too). Then a study came out about Brazil Nuts containing Selenium. The study was on people in an area that lacked Selenium in their diet (you should know this).

Either way I as well as several other people on the board started eating 2-3 Raw Brazil Nuts daily and have seen improvement. My symptoms have not gone away but the swelling is down by at least half! I as well as the other girls who’ve tried it on the board saw results the next day. This is no gimick. I make no promises but I am AMAZED at how much better my eyes look now!

I figure Brazil Nuts are just food. People eat them. How could it really harm anyone by eating 2-3 nuts a day? So I gave it a shot. My husband and I have pictures to prove the swelling has gone down. I know I’m still in the HOT phase but I’ll do whatever lessens the symptoms as I go along. My eye appt with a specialist is tomrorrow. I plan on bringing this up with him.

[snelsen]

#1061372

Hi, sorry you may be dealing with TED. Contrary to others on the board, I find hot compresses to my eyes give much relief to my eyes when they hurt (scratchy, swollen) I realize it is counter-intuitive, but my eye docs told me that other people had found relief. So that is what I do. Of course, when I had my surgeries, I used cold compresses constantly, and elevated my head for as long as I could tolerate it. I was a cold compress junkie post op. When I had my OD, i slept (or tried to!) with the head of bed elevated for about two weeks, and had almost no swelling.

I am glad you have an appointment with an ophthamologist. I don’t know if it would help you financially with insurance, but Graves’ and TED are two separate conditions,and you MIGHT be able to argue that TED is a new diagnosis. Especially if it is a huge financial issue for you. Because TED can cost big bucks with frequent eye doc visits, and possible sequential multiple surgeries. Just a thought.

The Brazil nut suggestion is interesting. I had heard about it on this board, have not tried it. I did mention it to my three eye docs, none seemed aware of any real research on the subject. Their response was exactly what Krisann79 said, it probably cannot hurt you to eat a few Brazil nuts a day. They said that in the hot phase, eyes are changing all the time, so it is hard to attribute any improvement to a small intervention of a few nuts a day. But is not harmful, and if it seems to help, I would do it in a heartbeat. I think I am in the inactive phase now, but that does not mean my eyes are comfortable, far from it! Tearing, swelling, light sensitivity, and a scratchiness feeling under my left upper eyelid.

If you get this before your appointment, clarify with the eye doc about the methimazole. You are taking that for Graves’, but I do not believe it will impact the course of TED at all. Different subjects. Or maybe I misunderstood what you were saying. Good luck today.
Shirley

[Melisma]

#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.

[Krisann79]

#1061374

I’m not familiar with these but please do share!

[snelsen]

#1061375

No, I have not heard of it either. But I am a person who is unlikely to believe anything that makes much difference, given the course of the disease of both TED and Graves’. Other than the standard treatments, and some interventions to help with symptoms. Having said that, I sure have no argument with living well with Graves’! As long as what I eat does not interfere with the foods I really enjoy! For me, coffee, occasional red wine, chocolate and butter are part of my food world-in moderation, of course! However, I like to read, so I will reserve the book from the library. As I said, who can argue with living well? Especially when we have these two diseases. Graves’ and TED have made breast cancer a picnic in the park for me. And I had chemo for six months!
Shirley

[Kimberly]

#1061376

Melisma wrote: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.

Hello – I would proceed with extreme caution on this one. Mr. Johnson says that he "cured" his Graves’ by addressing nutritional imbalances; however, he has completely dropped off the radar in the last few years.

[Melisma]

#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]

#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!

[msmanatee]

#1061379

No, thank YOU, Melsima! I am going to ask about your ointment this week!! I’m on oral pred and drops, swelling to beat the band, nothing ever changes.

I think you’re probably right about the ophthal… I had a similar experience in a fair-sized city, diagnosed alleric (for the first time ever) and treated for that for two months prior to finally getting TED diagnosis.

Hope you continue to feel better.

[Melisma]

#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)

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