[Bobbi December 16, 2008 at 7:40 pm Post count: 1324]

#1075494

The issue with the "bags" under the eyes, when we have TED is different from the issue caused by getting a cold, not getting enough sleep, etc. The soft tissue isn’t swelling so much as it is being pushed forward by the enlargement of the muscles in the eyes. That is why it typically does not help much to use the usual types of beauty preparations that are supposed to reduce puffiness.

[lyn December 19, 2008 at 7:18 pm Post count: 6]

#1075495

It’s my first time to this site. It’s nice to hear other experiences. I was diagnosed w/ graves disease a few months ago. For the past month or so, I have been waking up with puffy eyes. There is so much fluid near the bridge of my nose/eye that my husband said I look like a battered woman. The puffyness goes down some after standing with my eyes running in hot water in the shower.
I’m confused with what I’m reading here. Do you think my eyes are swollen or are they being pushed out?
My endocrinologist doesn’t think my eye situation is severe. He didn’t think it is urgent to be seen by an opthamologist. Any opinions from those of you who have experiences similar issues?
Thanks!

[Ski December 19, 2008 at 7:32 pm Post count: 1569]

#1075496

Hi Lyn,

There are two ways our eyes can be affected by TED (thyroid eye disease, or Graves’ eye disease, same thing). Either the muscles can swell, or the fat behind the orbit can expand. In either case, in some people the result is that the eyes are pushed forward, out of the orbital cavity, and in some people, the result is that the fat from behind the eyes is pushed forward into the tissues around the eye, causing swelling as you describe. In some people there is a combination of these effects going on.

My first symptom (well, the first one that sent me to the doctor) was puffy eyes, over my eyes. The puffiness can be exhibited anywhere around the eyes.

An ophthalmologist is really the best one to judge whether your situation is mild or severe. It always seems severe when it’s your eyes, but the doctor’s perspective is valuable. In MOST cases, TED is left alone, and we wait and see what happens as time goes by. Having a baseline appointment gives the ophthalmologist a reference point to figure out how severe your changes are. I would ask for a referral, if it were me. It’s good to have that first appointment behind you, and also a resource in case changes begin to happen rapidly.

During this time, you may benefit from raising the head of your bed. It works better than stacks of pillows because you don’t have a specific stress point at the "bend" as you lay on the stack, plus you can’t roll off and end up level again. It helps the fluid to NOT collect around the eyes while you sleep. My husband put pieces of a 4×4 under the feet at the head of the bed. It’s a little odd, but in the end it helped my eyes and it also helped his middle-of-the-night indigestion.

I hope this helps some!

[elf December 19, 2008 at 9:01 pm Post count: 181]

#1075497

Lyn, the eye development may stop at various points for different people. Some are done with swelling only, and for others swelling is just a beginning of a process. We don’t know at the beginning which way our TED will go.

My first swelling on one eye appeared 2 months after the diagnosis. Very, very slowly, they started protruding. So slow was the process that I woldn’t notice on day to day basis, but a year after the diagnosis, I had a medium size protrusion and the "Graves frown". That was the point the development stopped for me (I have had no discomfort feeling in my eyes since). If you have a gritty, sandy feeling in the eyes then it means something is going on. Hopefully, all you will get will be this puffinness.

Having your thyroid levels normalized is very important for TED, and also never ever lay your head low at night (no skinny pillows, better 2 or 3 of them), this facilitates protrusion.

[Bobbi December 20, 2008 at 8:08 am Post count: 1324]

#1075498

LYN:

Endocrinologists do not treat the eye disease. They often give us a crude test (follow the moving pencil/finger) to see if our eye muscles are tracking correctly. An opthamologist would do this as well. So, they have some idea of how much impact the disease is having on the eye muscles. But, again, they are not the ones who treat it, nor are they necessarily expert at it. Ophthamologists are.

Puffiness around the eyes can be aggravated by sleeping flat. If you notice significantly more puffiness in the mornings, you can try elevating the bed by putting boards, or books under the supports at the head of the bed. (Don’t simply elevate your head by piling pillows up: you can throw off your back/neck.)

IThe eye area is particularly sensitive to "insults and injuries", so the puffiness might be a more temporary result of suddenly dropping thyroid hormone levels — at least that was my interpretation of things when it happened to me. Yes, I had the eye disease in a moderate form, but the battered wife look occurred right around the time I was getting treated and had gone slightly hypo (before we got things adjusted). There I was feeling relatively good for the first time in a year or so, and I suddenly "looked" ill. What an irony. Anyway, keep this in mind if you go to an opthamologist and they don’t want to do any treatments yet. They typically take a wait and see approach to intervention unless they think the optic nerve is actually being threatened. There are a variety of good medical reasons for this cautiousness, but for those of us panicked by our changing looks and the possibility of the eye disease itself, their caution can be frustrating.

[lyn December 20, 2008 at 8:26 am Post count: 6]

#1075499

This site is great. Thank you for the responses.
I was in for my usual eye exam around September, but did not have the swelling at that time. I will make an appointment so the puffyness can now be followed, and can be further evaluated by the opthamologist.
I tried elevating my head with pillows last night. That lasted for a short time before my neck was sore, I’m a side sleeper. Great idea to put boards under the feet at the headboard. I’ll give that a try.

[lyn August 25, 2009 at 11:44 am Post count: 6]

#1075500

It’s been a few months since I was seen by my opthalmologist following my Graves disease. My right eye is showing a slight bulge, with relatively little change.
When I was last seen, I commented that I thought I may be experiencing double vision when reading or watching tv. I told the optha. that I tend to close one eye and then I can clearly see. I tend to see a line of text and then other lines of text appear blurred above/below the line I’m trying to focus on. As for the tv, I generally see it and see a blurred tv below the "real" tv. The optha. told me I am not experiencing double vision associated w/ Graves. When I asked why this is happening, he responded that it must be my age. I’d agree if I were elderly, but at 40, I find my age an unlikely cause! Not many 40 year olds have to close one eye to read.
I am following up w/ my primary care physician this week so we can take it from here. I’ve also got a follow-up scheduled w/ the optha in Sept.
Any thoughts as to what I’m describing/experiencing?

[lizlair August 27, 2009 at 7:16 am Post count: 10]

#1075501

I strongly suggest that you see a opthamologist that specilizes in TED. My TED started with double vision, redness/irritation, and bulging. The double vision was so bad that I could not watch TV, read, or even drive at night. Repeated complaints to my local optha resulted in a diagnosis of conjuncitivitis or pink eye. After multiple visits and questions of "Could this be related to Graves Disease," the doctor finally admitted it was possible, but stated that they do not treat for Graves. I am now with a specialist at the Mayo Clinic.

The good news is that the double vision has subsided and my eyes have now entered a "cold" phase. In other words, I’m not getting any worse. So, hang in there, see a specialist, and keep your eyes really lubricated.

[elf August 29, 2009 at 1:28 pm Post count: 181]

#1075502

Lyn, what you are seeing, IS the double vision. It IS caused by your thyroid eye problems (not your age, ha). Your slightly bulging eye must have swollen muscles pushing your eye just slightly so out of line. This happens to people with TED, before any surgeries, or happens as a result of a surgery. I had this double vision for a while after my recent orbital decompression on one eye, – two lines of text, two TVs, and closing one eye to see single vision.

[MRHabetz September 13, 2009 at 1:24 am Post count: 42]

#1075503

Ok ladies…………I’m completely confused. I have had many many comments lately about how I lookd tired and my eyes look puffy!! Like I just woke up or got out of bed when I had been up for hours already. I also have sudden problems focusing that from what I can remember started around the time I was diagnosed with Graves…….I’m on medicaid now and wonder since they don’t cover routine eye care if maybe anyone has any experience with them sending me for an appointment because of the Grave’s. Also, what do you ladies think? I haven’t worn glasses since I was 13 and am now 34, but it just started happening within the last 6 months. I can read 2 pages of a book then have to put it away because I suddenly can’t focus on a line anymore. Other than that, most of the time my vision is fine!! I don’t want this go get out of hand as I am taking 3 classes this semester and plan on graduating in December. I’m just hoping that it doesn’t happen to me in the middle of a test!!! I’m worried and need tips and words of encouragement please.

Thanks,
Michelle

[Ski September 14, 2009 at 5:00 pm Post count: 1569]

#1075504

Since you’re concerned about your ability to see a doctor, I would first suggest getting preservative-free artificial tears (not "get-the-red-out" drops), and use them whenever you notice the "blurring." Dry eyes are a symptom of Graves’ Disease, separate from TED symptoms, so it’s always good to keep the moisture level up. Dry eyes can make your vision poor, so that you think you need glasses, but just having the proper moisture might solve everything.

About the puffy eyes, tired eyes ~ I don’t remember exactly where you are in your treatment, is it possible you’ve gone hypo? That can be a symptom of hypo.

If you definitely want to see a doctor about the potential of having TED, you should get a referral to an ophthalmologist ~ that is medical care, not vision care, and you should be covered for eye diseases.

[LBKT September 17, 2009 at 2:24 am Post count: 11]

#1075505

Hi Michelle,

Not sure I can be much help… I have the bulging eyes and am hyperthyroid but haven’t been tested for Graves’ yet, never needed glasses before, am 42, and first saw an opthamologist because my vision was suddenly blurry about 4-5 months ago regardless, near or far. I work on a computer 40 hrs a week and my husband’s unemployed so I can’t afford to not work. Optha first thought my age was the cause of the blurriness and that was before my eyes bulged so I thought he must be right. He also kept recommending lubricating eye drops. It took quite a while and many different kinds of lubricating eye drops that he let me try over many different appointments to find the one that worked best. Also took several different glasses prescription adjustments to get what worked best. Glasses still aren’t perfect but they get me through each day much much better than without them. I also use an eye ointment overnight. I’ve had a few instances of double vision, but since I’ve combined the best glasses prescription worn every day all day even when I’m not at work just to help keep the eye muscles from getting fatigued as much as possible, the lubricating eye drops (preservative free) probably a dozen or more times a day, and the eye ointment each night, the double vision doesn’t happen and the blurriness is much much better. Work is definitely do-able this way instead of seeming impossible like it did before this combination. You’re so close to graduating. I sure do hope you find what works best for you so the reading problems don’t get in the way of your school success. Best wishes, LBKT

[CindyBrock61 September 19, 2009 at 3:13 pm Post count: 1]

#1075506

I don’t even know where to begin. My mother (who is 79 now) was diagnosed with Grave’s in the 60’s. She had the RAI treatment and has been on Synthroid for I don’t know how long. Her "bulging" eyes have never bothered her. In fact, as a nurse, she has been able to share her condition with others and offer encouragement, etc. The woman is a saint!

For the past at leasts 6 years, she’s been seeing an eye doctor who – I just discovered after reading her medical records – [u:adjx61vh][b:adjx61vh]has NOT been helping her[/b:adjx61vh][/u:adjx61vh]. He keeps saying it’s not this, it’s not that. Finally, on his last entry a month ago, he put a comment about Hyperthyroid Eye Disease. My mom also mentioned on her last visit that the doctor said something about compression. But, that’s where it stopped. This man – and I’m using that term loosely – never even referred her off to an endocrinologist during all this time. For that matter, neither did her personal doctor! ARGH! ARGH!

I’m a professional writer so research is my middle name! Thus, 3 days ago I began researching on my own. After reading all that I have, I am 100% certain my mom’s eye issues – e.g., worsening blurry vision – are because of her Grave’s and optical nerve compression. I am taking her to a new eye specialist on Monday. (Just so happens I found this eye specialst on the internet and when I called her office, her office manager is a woman I went to Jr. High and High School with! Praise the Lord!)

My mom suffered two small strokes early last week and fell and broke her hip. So, right now she’s sitting in a convelesant hospital recovering from the hip surgery having some memory "hiccups" and obsessing about her vision problem. (My Aunt, who’s a nurse, said after a stroke patients who have visual issues have a tendency to believe they are far worse than they are.)

My parents have traveled by RV my entire life (and I’m 48). In fact, up until 2 years ago, they were still actively traveling. However, with little to no vision, traveling is just not in the game plan any longer. I am torn between ANGER and DEVASTATION as what has happened to my mom. This woman had 2 children die in infancy, adopted my brother and I and (along with my dad) has given us a wonderful life. She has done nothing but help the world, putting her needs behind everyone else’s.

In my gut, I know that my mom’s eyesight can be helped with optical decompression surgery. No matter where my dad and I have to take her (even the Mayo Clinic in Minnesota), no matter how much it costs, we will do anything and everything to get her eyesight restored!!

I am so grateful to have found this web site and, after reading a large number of posts, feel more encouraged that my mom may be able to see better.

[JLynne November 16, 2010 at 11:39 pm Post count: 1]

#1075507

I’m new to this BB but have had Graves/TED since Dec. of 2007. I am currently scheduled for strabismus surgery on Dec. 1 and would like to know what I can expect as far as recovery goes? Also, my eyes are constantly uncomfortable. Most they feel tight and the lids feel heavy but they have times of the gritty dry feeling as well. I use the organic eye drops and gels and they help for just a short time. My eye doc says the surgery will probably not help the discomfort. Has anyone had a similar experience? I can handle the double vision with prisms but this discomfort is driving me crazy. Thanks

[KimberlyOnline Facilitator November 17, 2010 at 11:27 pm Post count: 4294]

#1075508

Hello – Hopefully, you will receive a response from someone who has been through strabismus surgery, but in general, I don’t believe this particular surgery will provide relief from dry eye.

With TED, the quality *and* quantity of our tears changes, which can cause dry eye issues. Plus, if we are dealing with eyelid retraction, the eyes don’t fully close when we blink or when we are sleeping. This can exacerbate the problem. Having surgery to correct the eyelid retraction can potentially offer some relief – but when needed, this surgery is performed *after* a period of recovery from the strabismus surgery.

The dry eye situation is not only annoying, but it can potentially cause abrasions on the cornea. I would ask your doctor to provide some suggested solutions besides the drops you are using. At this year’s conference, one doc mentioned that it helps to get plenty of Omega 3 Fatty Acids in the diet, increase humidity in the home, and wear moisture chambers/goggles at night. He also said that there are steroid eye drops that can provide *short term* relief. There is also a procedure where docs can actually put plugs (“punctual plugs”) in our lower tear ducts to keep the moisture from draining away. Some patients have had better luck with this procedure than others.

Best of luck to you! Hopefully others will chime in with additional suggestions.

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