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  • Anonymous
      Post count: 93172

      Dear Bobbie, Ski, and fellow TED patients,
      As fearful as I was to go on IV steroids for treatment of my worsening Graves Eye Disease, it is so good to have my “eyes back” again. So far I’ve received 6 megadoses (1,000mg) of SoluMedrol IV and have 3 more infusions to receive this coming week, I can’t tell you how pleased I am with the results. Everything hs improved dramatically —- my face is long longer distorted because of the eye swelling, the burning, etc. has diminished a great deal, the light sensitivity is much less, and even my husband tells me that I have that “twinkle” in my eyes again. I’ll be on a tapering oral regime of Prednisone after my last IV infusion for about a month or so. I’m well aware that the symptoms may redevelop, and I know I can’t stay on steroids the rest of my life, but just to have some relief now and to prevent the optic newve damage that seemed to be developing, I[m very happy I agreed to the treatment. The endocrinologist has doubled my Tapazole dosage from 10 to 20 mg q day as my last TSH level was only 0.02. Tomorrow when I see my grandchildren, I’ll look more like myself and they won’t have to see me in my dark wrap around sunglasses all the time.
      Can anyone offer any comments, etc as to what I might expect once the steroids wear off. Do the symptoms reappear quickly === like in a few weeks, or is the process more gradual? I know everyone is different, but I thought I’d ask.
      Hope you all have a meaningful Memorial Day. Nina

      Anonymous
        Post count: 93172

        I am new to this site. I am from Dublin, Ireland.
        I was wondering is there anything I can do to make my eyes look better. they are very red and I have bags under them that I haven’t been able to get rid of for years. I get as much sleep as I can and take my tablets.
        I am also taking drops for them but nothing seems to help.

        Anonymous
          Post count: 93172

          Hi, Rosered, and welcome to the Board.

          There are two types of eye drops sold in the US — I’m not sure about Ireland. But of the two types, the one called “artificial tears” is the one we are supposed to use for our Graves-related eye problems. The other type advertises itself as “get the red out” — and when our eyes ARE red, it is tempting to use them. But the artificial tears are the ones that are important, because thyroid disease changes the quality of our tears, making them less capable of lubricating the eyes. I don’t know what type of drops you are using, so I mention this, just in case you are using the other type, trying to eliminate “red”.

          If you have not been using the artificial tears type of drop, you could switch and see if that helps. My doctor insisted on the “single use” package of drops, without preservatives in them. But other doctors have recommended other drops, that come in a multi-use bottle. Just make sure they are artificial tears.

          AS for the bags — I don’t know of anything that will eliminate them, other than plastic surgery. There are skin care products that advertise that they can do it — but my experience with them does not suggest that they “work.”

          Bobbi — NGDF Online Facilitator

          Anonymous
            Post count: 93172

            Hello and welcome! Bobbi is right with the eye drops. I also use them as my eyes get dry as well. I am not sure about the bags under your eyes though. Do you mean real skin hanging down (even if just a little bit) or do you mean you have dark circles under them?

            IF you have dark circle or even just a little droop you could try meditation to relax and drink plenty of water for your body weight. You can try cucumber to relax your eye muscles for a few minutes per night a few times a week. Sleeping is important. 8-10 hours a night is best but of course woman like me with 4 kids well we know how that goes LOL. Try to get as much sleep at one time nightly as you can without interruptions. Put kids in another room, animals as well keep door shut if you have to, if your husband or significant other snores then sleep somewhere else. YOU CAN NOT get adequate sleep if you are tossing and turning due to noises and such at night, even if you are in that bed 10 hours how much sleep did you actually get(ask yourself). Before bedtime which is the time your body heals itself, try to calm down before you go to bed.
            Get yourself ready for bed about an hour before hand, wash your face, moisturize it, get your things ready for the next day, get dressed for bed, sit and watch tv, read or do what you wish for a few minutes before bedtime, then get into bed and shut everything off and relax, think of your day(don’t if it was bad lol) , reflect on your religion if you do that and breathe calmly and deeply, close your eyes and have that be the last thing you do before sleeping. These are stress relievers and it helps with the appearance of bags/sagging/darkness under our eyes. The moisturizing is key as well and do it when face is only patted dry and right after you wash it so you are locking in the moisture that is on your face. Just some suggestions…Good luck and warm wishes!!

            Anonymous
              Post count: 93172

              ok I rarely moisturise because I never get the time which also means I also don’t get the time to relax too. I will try the cucumber and moisturiser.
              I am only 27 and still think my skin is like it was at seventeen (flawless and pert). That is not the case. I may try and get a good moiseuriser for my skin cause when I do I only use generic stuff.

              I can’t sleep away from my partner even though she snores because there is only a sofa in the house and one bed plus I would miss her.
              I usually only get about seven hours sleep so perhaps this is part f the problem too.

              Thank you for your help

              Anonymous
                Post count: 93172

                For a good moiseuriser, you can use the one from Wal-Mart that is the same as Oil of Olay, white bottle with black lid (no not pushing walmart or Oil of Olay, but do like Oil of Olay stuff). If you get the night cream it will take about 2 seconds to put it on and just put the daytime cream on after brushing you teeth and you will never miss the couple of second.

                Julie

                Anonymous
                  Post count: 93172

                  A good moisturizer is always worth spending the money. I use Olay products. Oil of olay is great because its simple and I can use it day or night. I rub it in real well though, take the time to continue to rub it in until it is all gone.

                  I certainly understand that you do not wish to no be near her even though she snores. Maybe you can try to figure out why she snores and go from there. There is a reason why people snore and it might be worth looking into why she does, she too would get a better sleep as well. :-)

                  Anonymous
                    Post count: 93172

                    There is a characteristic puffiness under the eyes in some people with Thyroid Eye Disease that results from fatty tissue from behind the eyes being pushed forward into the skin surrounding the eyes. This fatty tissue attracts water and can result in varying degrees of a baggy look under the eyes.

                    If this is what you have, no amount of moisurizer will change it. Raising the head of the bed at night or using cold compresses such as cucumbers might reduce the appearance of bagginess somewhat, but the only way to truly eliminate it is by blepheraplasty, or plastic surgery of the lower eyelids.

                    This is part of the group of reconstructive eye surgeries for many Graves’ patients who need surgeries, and the only surgery insurance companies in the U.S. usually won’t pay for since it’s considered cosmetic (even though the problem was caused by the disease).

                    If you’re only 27 it’s unlikely your bagginess is from a cause other than Graves’ Disease, but you certainly should get an evaluation from an ophthalmologist both for that reason and for your red eyes. It’s possible your eyes aren’t closing at night and you’re not aware of it. It might help you to use an ointment in your eyes at night. I’m not sure what brands are sold in Ireland, but your ophthalmologist can advise you on that.

                    Try to get an evaluation with an ophthalmologist who sees lots of Graves’ patients, preferably one who does reconstructive surgeries. I don’t know how difficult that will be for you to do, but I think it’s important.

                    Dianne W
                    Online Facilitator

                    Anonymous
                      Post count: 93172

                      Do my readings need to be stable for the surgery?
                      I have requested a brochure from a cosmetic surgery place and will ask when I see my endochronologist next week if she has any ideas too

                      Anonymous
                        Post count: 93172

                        I have been having problems with my eyes for a while. It comes and goes. And of course I assume it’s allergies. To make this as clear as I can be, I have been in remission from the last bout with Grave’s Disease since May 2007 without any medicine at all. I work hard to stay healthy and not get sick since my trigger is viral infections.(flu mostly)

                        Well last year I went to optometrist and told him that my eyes were blurry but I didn’t know why and that I found a black line in my left eye. Dr. asked if it was like sand and at the time i said no because i really didn’t know what it was. dr. said it was a floater that i was seeing but it was a line not the dots that I usually have. so that was no problem, i was greatful to know what the line was.

                        But the feeling htat something was there was annoying. He said that he wanted me to see an MD that dealt with graves eye and to keep eye drops in my eyes to help hydrate them. well I guess i got use to the feeling and with the kids being sick and grandma dieing and everything happening at the same time i just “forgot” about it and got use to the annoyingness of it.

                        Well NOW it’s there again. I felt this eyelash in my eye the other day. I put eye drops in my eye and when I did i felt the thing in there. So I put more drops in there and tried to move the eye around and low and behold I found an eyelash up in the upper lid. I finally got it out. But there seems to be grit in there as well or a feeling of it. so i thought it was just another eyelash. I washed my other eye and didn’t feel that anything was in there. Istill have this feeling of something in there and now it feels like a piece of sand. Both eyes are dry now.

                        I do have allergies to outside stuff grass is the worst and pollen. I dont’ usually take anything for it though and my eyes are usually fine. Just a stuffy nose is basically it and i get eczema as well from my allergies.

                        My eyes aren’t watery or itchy or antyhing just that “feeling” in it and dryness. I put allergy drops in my eyes and that doesn’t help the feeling so I assume its not allergies.

                        I am going to optometrist today at 11am. and I have an appt with an MD who deals with graves eye disease next week.

                        can this be thyroid eye disease even if I am in remission with my thyroid?

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