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shakira7
Post count: 82SueAndHerZoo
Post count: 439ChristinaDe
Post count: 115I also can relate to the puffy eyes. This is a symptom that has really bothered me from the start because it’s a constant reminder that I have a “disease”. I kept telling my husband how much I hate the fact that I have an illness that not only affects my mood, mind & body…but my appearance as well. And since the eyes have been called the “window to the soul” – having them change feels even more significant. Plus it feels like I’m wearing a sign that notifies the world that something is off w/ me.
I’ve been seen by a neuro opthamologist who specializes in Graves’/thyroid pts, and a opthalmic plastic surgeon who does as well. They both told me that since my antibodies are low to almost non-existent that my eye issues are probably related to my thyroid levels and not Graves’. That means that (at this point anyway) they’re not too concerned that they will suddenly bulge out or that I’ll develop double vision. But it also means that whenever my thyroid levels (TSH, T4, T3) rise or fall out of range – or even just move, even when moving toward normal – that I’ll see an increase in this swelling. Apparently the swelling begins w/ fluid building behind my eye & sort of spills out to the surrounding tissues. Once my levels normalize AND then stay there for at least 6 months, but maybe as long as a year, I “should” see the swelling go down. To what degree no one knows yet. I’ve noticed all this to be true so far. So now I wait. But I’m w/ you on this one…it’s not a pleasant experience.
Also, I was told to make sure that I wait this out before doing any surgery since there is no way to know if it’ll completely resolve on its own, or just partially & to what degree. Ughh – hate the waiting, but it makes sense. And when the swelling gets worse, they don’t just bother me in the mirror. They ache a bit, they’re dry & gritty, that sort of thing. But they assure me there is hope. Whatever is left after all this can be surgically dealt with!
But I was also told to call if I developed any vision changes cuz this could mean that a nerve is involved & I’d need to be seen (although they’re not expecting this).In the meantime, the thing that seems to make the most difference in mine is keeping my head elevated as much as possible. For example, the swelling tends to worsen for several hrs after a yoga class. Also, staying hydrated seems to make the swelling swing up & down a little less (but I’m not entirely sure if they’re related or if that’s just in my head). Seems like you may be onto something w/ the sodium thing as well. I’ve thought the same thing. Would love to hear if you notice any improvement after decreasing your sodium intake!
snelsen
Post count: 1909Post count: 82Raspberry
Post count: 273Post count: 82Hi everyone, it’s been exactly 2 weeks since I posted this message, and I’m afraid I don’t see any major change on my puffy eyelid. It tends to look more puffier in the morning, especially when I sleep for long hours. It looks a little better in the evening, however, the puffiness is STILL there.
My parents were in town last week, to visit me. My mom even noticed that, from the side, she sees my eyelids are puffy.
On Monday, the 16th, I went to see an opthalmologist.
He is not a neuro-opthalmologist, but the ratemymd.com has a very good review of him, and some even feels he is the best opthalmlogist in town.
He confirmed me that, although he doesn’t know why my eyelids are puffy, he doesn’t see any signs of Thyroid Eye Disorder.I have decreased tremendous amount of sodium in my diet, no more marinated cabbage salad in my dinner menu, and no more of buckwheat noodles. I also picked up the wedge from Sears to lift up my head level of my bed.
Yet, my eyelids are still puffy. I don’t see any signs of eye protusion, but I don’t see any improvement of my puffy eyelids either.
@ChristinaDe, I think I am in a similar situation as yours. My right side eyelid is puffy since August, and I really hope this goes away eventually. How are your eyelids?
Depending on how this puffy eyelid evolves, I am looking into blepharoplasty, to have the fatty part of the upper eyelid removed. They are starting to look like frog’s eyelids. Ugh.
I would rather deal with weight issue than to deal with eyelids which I have very little control of.I have a follow-up with my endocrinologist, however, I got another appt with a different endocrinologist, who has an excellent review on ratemymd.com. It’s in February 2014, however, I think it’s worth seeing someone else and get a second opinion.
I am trying to keep my mind in peace and trying to be positive, thanks to this forum and the support I am getting from the readers.
Shakira7, hoping to get her normal look back.
Post count: 115PattiMeg
Post count: 42Kimberly
Post count: 4294Post count: 82Post count: 115Shakira, I’m on Synthroid. Had my thyroid removed February 1st, 2013. I can tell that my levels have flattened out from my last dose increase (which was back in early September) because my eye bags & swelling have really gone down. Like I said before, every time my thyroid meds are adjusted my eyes swell. That was true while I was on Tapazole as well. And they REALLY swell when I’m hypo. So I’m thinking (fingers crossed) that my levels are pretty close to optimal now since my eyes have not only improved substantially, but so has my mood, energy, etc. I’ll know exactly where I stand in another week or so.
Just to give you a little more detail on what my experience has been…they swelled pretty bad while on Tapazole because I just couldn’t stay stable on the stuff and I saw an immediate improvement after thyroidectomy (which lasted a few weeks, until I went hypo). Then they worsened during my 1st Synthroid increase, improved when my levels stabilized at that dose, and worsened again as I sat in hypo-land for a bit. Got another Synthroid increase, worsened for a few weeks until that dose stabilized, then improved a bit once I sat at the new level awhile, and then gradually got a bit puffy as I sat at that very slightly hypo level. My 3rd increase was this last one & as usual I puffed like a blowfish as the thyroid levels moved, and as is customary for me, I improved once I leveled out. I’m so hoping that this was my last increase for awhile because if my eyes improve even slightly from here then I know that I won’t need any eye surgeries. Time will tell.
Anyway, for now, my eyes have no upper swelling, just a tiny bit of lower swelling on the left and even less on the right. No dryness or irritation. Good thing I didn’t have any surgery to remove anything from them yet. If I had they’d be sunken now!
When my eyes swell they SWELL! I can actually see my upper and lower lids as I look out into the room!!! It still amazes me that they can go that far up and then that far down in just 6 weeks.My eyes, hair and muscle/joint areas are my first signs that my levels may be off – no matter what med I’ve been on. So I pay attention, but I try not to panic anymore. I’m convinced these are not permanent symptoms but just signs that my levels are either moving or too low (and in the beginning, too high). I guess that’s why my dr’s have told me that this is not likely Graves’ Eye Disease in my case, but Thyroid Eye Disease associated w/ abnormal levels. Especially since the swelling is unrelated to antibody levels in my case. I know the waiting is miserable – I’ve hated it – but it really is important. The old saying, “time will tell” applies here.
I think you’ve made a good decision in putting off any eye surgeries for later & to continue being monitored by specialists. Based on my own experience, the most important thing you can do now is work to stabilize those thyroid levels as soon as possible so that “6 month to a year” clock can begin ticking!!! Hopefully neither of us will need any eye surgeries, but if we do I hear there are some amazing surgeons out there.
Post count: 4294Post count: 42Post count: 82
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