[azroses2322]

in reply to: Eye Symptoms #1172673

Watering, red, dry, scratchy eyes are a symptom of TED. They thought I had allergies also and took me that route — allergy drops did not help and my eyes hurt worse. It was not until I got to an opthamologist that understood TED and made sure I got the information and teaching I needed to protect my eyes. It was a tedious and constant routine. He taught me that the ones called artificial tears is not enough for severe TED — those drops will only last 5 minutes, but taught me to get the dry eye solution lubricants (there are several brands and varieties and yes, get the ones that are perservative-free) and to use then as often as I needed. I had it so bad, he said every 15 minutes waking and to use the night-time lubricating ointment and a mask at night. That was my routine until I got out of the hot phase and could get the surgeries to reconstruct my eyes and eyelids. He also taught me to avoid air movement — that includes being in the line of A/C or heater vents, ceiling fans, etc. and to avoid dry or windy weather. If I could not avoid it to use a humidifier. I worked and slept over a humidifier. At times, I had to wear safety glasses indoors when just the still air wafting past me as I walked through the house dried out my protruding eyeballs. Outdoors, I made sure I had protective wrap-around, with wide sides type of sunglasses and on a windy day had to wear optometry dark glasses (they kind they give you after they dialate your eyes) over safety glasses for double-protection. Another thing to note, is to have someone check your eyes when you are asleep. It may seem like you can close them when you close one and look in the mirror but when you sleep muscles relax and if a sliver of your eyeball is exposed while you sleep, it can dry them out. If you try using a mask while you sleep, get the kind that “cup” over your eyes so there is room for eye movement while you sleep or you eyelashes may bother you. If you have TED and your eyes have begun to protrude, they may each protrude at a different rate. A good Opthamologist will measure this and monitor it. If they are protruding, it is one of the symptoms. Another is for the eyelids to receed (top ones up and bottom ones down) so that you cannot close your eyes and when open you have a startled look. All of this causes them to dry out even more. When my eyes get real sore, I have to close them down with nightime lubricating ointment and a mask until they are re-lubricated to the point they do not hurt anymore then live with the lubricating drops — these allow you to see once used so they are for waking hours. Using the ointment you will not be able to see, so, you have plan accordingly. There is one other thing that helped me in the midst of the hot phase and severe TED and I still have them years later — that is punctum plugs — they really help keep more of the good moisture on the eyeballs. One last symptom of TED is eye-fatigue because the eye muscles are so swollen, and rubbery (causing the protrusion). Mine got to the point were they hurt all the waking time — just normal reactive eye-movement was fatiguing. I couldn’t wait to close them down. There is light at the end of the tunnel. I survived and so did my eye-sight. I am grateful to the proacitve and caring doctors I had. I hope you get good medical help. Eyesight is a precious gift.

[azroses2322]

in reply to: If you had RAI…how long did it take you to become hypo?? #1169736

I had RAI several years ago on 6/19, by 8/20 I got the first TSH level reading into the Hypo range (12), my doctor did not want to start the replacement yet. But 2 1/2 weeks later I was in ER with fairly severe Hypo symptoms and the replacement was started. The amount of the replacement was increased as needed over a long period of time, I was told with RAI, not all of the thryoid dies all at once.

[azroses2322]

in reply to: LOWER EYELID SURG-Alograft vs. palatal graft? #1061169

For lower lid retraction, they first tried cadaver pericardium on me (2 times on the right eyelid and 1 time on the left) but within 9 months the lower lids fell back down to my cheek bones. I was then told that for as severe a case of TED that I had, it was just not strong enough. The next surgeon I saw, then used my ear catiliage. This has served well. There was more pain with the ears healing than the eyes but they finally healed.
I would think if this is an option for you that it would be more palatable than a palatal graft. You might want to ask if it would work for you.

[azroses2322]

in reply to: Loss of peripheral vision with GD/TED? #1063993

In addition to the possibility of TED which swells the muscles attached to the eyes and makes them rubbery and difficult if not impossible to move and eye fatigue sets in. Has your eye doctor checked your pressure and/or given you a visual field test? I ended up with severe TED with the buldging and then the settling back but then the eyes froze where I could not look up and they did not track sideways on the same plane. So if I needed to glance sideways, I got dizzy — I had to close one eye before I looked sideways and had to move my head to see — I could not see what was on the higher shelves in the store and I could not screw in a light bulb or do anything over my head. I felt like my peripheral was decreasing which is what I hear you saying. I had to stop driving for a while because I could not see the side of the road with out turning my head and getting dis-oriented and I could not keep track where I was because I could not watch traffic and the road signs or familiar markers.
Has your doctor checked your pressure — I got Graves related Glaucoma along with the whole package of severe TED issues. Glacoma can reduce your visual field — I keep getting tested for it and monitored.
3 years after first Graves diagnosis and 9 surgeries later, I still have Glaucoma which is controlled with eye drops but the rest of the problems have been corrected to the best the doctors could do and my vision just tested 20/20 for the first time since TED set in 3 years ago.

So please get everything checked out with a good Ophthamologist that is familiar with Graves.

[azroses2322]

in reply to: scarred #1064285

Dear Dianne, I am with you in spirit. Your posting was also my story, except I am 3 years further in the journey and a little older than you. I feel your pain and fear as I remember my journey. Everyone is different but rest assured there light at the end. With bad TED, you may not be able to be in the light ( I lived in the dark for 1 /2 years because I could not stand the light) but now can enjoy it. I hear you say you cry every day — Oh, how I have been there and the fear added to the stress. When it is your eyes, it is a constant reminder anytime that you have them open — the fear that you don’t know what is going to happen to your sight or how you can live without it or with it impaired — the fear adds stress and the stess affects everything — remember over-sensativity to stress is a symptom of Hyperthyroidism — so everyhing is feeding each other to keep you from well-being. When my eyes were at this point, they hurt so much that I would close them down for 12 to 14 hours a day by putting in the nighttime ointment and using a mask — listeing to music, or TV and sleeping or imagining I was in a safe and beautiful place — it was the only time I could find the healing thay my body needed and and ease the stress that was so damaging and it was the only time I did not stress over my impaired eyesight. I was able to continue to work by switching to telecommuting and that helped take my mind off the fear during waking hours. Even the timing of your symptoms match the months of mine 3 years ago — I also had symptoms for a while — particularly in the spring. Then the swollen eyes in May and then finally the Graves Diagnosis in June. The TED was the scariest thing about the disease for those of us affected by TED — and I had a severe case of it. Please take care of yourself and your eyes — there are lots of postings here with suggestions on how to do that. I have learned so many ways to live with the TED until Graves was under control enough that the TED could surgically be addressed. For me the surgeries did work — for the double vision and the imbalance of the eyes and not being able to look up (frozen eye muscles) — I had strabismus and although I was scared of it, it worked beautifully. I had to wear a patch on one eye or the other for about a week until it healed enough (and my brain adjusted, for my eyes to work together. Then I had several eyelid surgeries to get my eyelids to close and function and be able to protect my eyes, some approaches worked and some did not — everyone is different. Ultimately after getting the upper lids in the right place, they had to take cartilidge from my ears to prop up my bottom lids so that my eyes could close (this was done last June). This last surgery was performed 3 years to the day after of my Graves diagnosis. When I was first diagnosed I thought a month until full recovery and return to normal life, would be an unbearable eternity, 3 years later, I look back and see the baby steps that it took, the many doctors and the intense daily challenges and successes and the ongoing steps and I realize it was all part of the journey — I placed a priority on my eyes and it paid off. I am so grateful for having doctors that had the skills and training to be able to help me. When one doctor reached the end of his expertise, he would send me to someone else who could help. As stated above please have your pressure monitored and along with the visual field. I did end up with Glaucoma — which once I would have considered the end of the world, but it is controlled meds and constatd checking and monitoring — but it is minor compared to what I have been though. I am grateful to have my eyesite and with only slight limitations to be functional at this stage. Please stay in touch with the bulletin board, you will get support and valuable info. If you can go to one of the conferences — it is worth it.

[azroses2322]

in reply to: EYE LUBRIDANT, EYE DROPS #1065784

Getting samples from your doctor and also getting the coupons that they get (the tablets of them) is the best way I found for savings — my doctors would give me a bag of samples and several coupons with each visit. The coupons in the sample boxes are usually less off then the coupons on display in the office. When I was in the hot phase and suffering so severly with the opthamalogy — couldn’t shut my eyes, I had to use ointment and a sleep mask to sleep — the kind of sleep mask that has a nose bridge cover protected my eyes the best from any air getting to them while sleeping — it also keeps the mask in place over the eyes better — less shifting. I also found that the masks that have wells for the eyes are better because they do not drag down the eyelashes. At the conference in Charlotte they showed us a mask that seals with a gel — maybe someone has info on that — it looked messy but maybe it is a less costly alternative. Before I started having eye surgeries I was spending an average of $40 – $50 a week on nightime ointment and daytime liquid lubricants. I would spend money on it before I would spend it on food, just to protect my sight. I also was going through a tube of ointment in 3 nights and having to use lubricants every 15 minutes during the waking hours. I figured I spend about $2500 in a year on OTC eye protection and since it is OTC, not only is it not covered by insurance, it is not even a tax deduction as a medical expense. The biggest improvement for the daytime lubricants usage was when I got punctum plugs in the lower lid ducts — I got them in Feb. of 2008 and still have them — the improvement was immediate — I remember driving home and having moisture in my eyes again — yes a lot still ran down my cheeks but more was being spread as I blinked. Also remember to blink — when you read or use a computer you do not blink — so you force frequent blinks as you read. Then when I started the restorative eye surgeries, things got progressively better — When they lower my upper lids — it helped the most, as they raised the lower lids I was using less and less — I no longer had to use ointment at night but still use a mask. If you are not already taking the other percautions, remember to stay away from air movement — that means even fans and the A/C or heat vents in your home and any public room you are in. Waling into a room anywhere, I would check for air vents and sit where I would least be exposed. Use safety glasses when the air cannot be avoided and use wrap around sunglasses over the safter glasses if possible — I found the opthamology sunglasses that are made to go over glasses fit over the saftey glasses for a double layer of protection. If you live in a dry climate — use a humidifier — your eyes will feel better.

[azroses2322]

in reply to: Eye Masks #1068926

Hi LBKT, I may be the one your were referring to. I have used the PM ointment your referred to, extensively for a couple of years. Even though my eyes much better now than they used to be, I still keep it on hand and use it at night if they get too dry. I also work on a computer all day and use daytime lubricants as needed. At night, I continue to use an eyemask even when I don’t need the PM ointment. I found some online that are molded with "wells" for the eyes. This works great since one of the problems I had was that a "flat" eye mask would train my eyelashes downward (probably with the eye movement during sleep) and so then the eyelashes would obstruct my vision and they hurt too much to curl them up. The interiorly molded masks take care of this problem.

[azroses2322]

in reply to: And the verdict is. Drum roll please…… #1069516

Hi Hopeful23, I hope you are able to successfully get regulated on replacement after RAI and being soo HYPO. If it helps, I was in just about the same position you are in now, Sept. ’07. After RAI. they let me get to 77.5 TSH, I felt so weak, I was not functioning and couldn’t think straight, let alone walk straight, I could barely get out of bed. I called my DR. and he sent me to ER. when they got the lab results, and put in an order for replacement, the ER doctor told me to go home and go to bed and don’t get out until I get enough replacement in me over the next few days — he said "you are too sick to do anything". It took about 4 days of taking the replacement before I began to feel the EDGE coming off of the intense drowning weakness. Until I was on replacement for a week, I was still "wall-banging/wall-hugging" when walking to the bathroom or kitchen. Being on replacement gave me life back. Good luck with your journey, and remember it is replacing something every cell in your body desparately needs. You can actually die without it.

[azroses2322]

in reply to: im afraid to. . . . #1069485

I have been told by the ENDO and the pharmacist that it is important to take it in the morning an hour before you eat anything and that it is also important to not forget to take it so they can get a good reading on your dose after about 6 weeks. Also they said do not take vitamins for 4 hours.

[azroses2322]

in reply to: Eye Disease #1069724

Hi Djay1, I had the eye muscle surgery over a year ago. It was done by a pediatric eye surgeon who specializes in it. Look up Strabismus surgery online for more info. I had gotten to the point that I could not look up and my eyes were mis-aligned on the horizontal plane. I was surprised that it was a pediatric eye surgeon until they explained that even though most of the time there patients are children born with misaligned eyes, they treat adults when their eyes are affected by disease such as Graves or diabetes or stoke or by accidents. I saw the surgeon and I was scheduled for surgery in a week after seeing him. This surgery (both eyes) opened my range of vision tremendously — I could look up again and glance to the sides without getting dizzy, actually move my eyeballs — it cured the eye fatigue ( I had been to the point that I had to spend 12 -14 hours a day with my eyes shut down because they hurt so much with fatigue). Knowing that the children go through this made it a little easier. Once I "saw" the results, I was a believer, in the necessity and the benefits.

[azroses2322]

in reply to: eye problem and headache #1075524

Also make sure that the Opth. is monitoring you eye pressure (keep your appointments), particularly if you use the steroid eye drops. Within 2 weeks after they up’ed me to Prednisone eye drops (because of the swelling), my pressure shot up and they had to stop it. Also for the swelling, try elevating you head when you sleep.

[azroses2322]

in reply to: Who Has Had RAI Once With Great Long Lasting Results #1070794

I had RAI 2 years ago. I was in thryoid storm prior to RAI and from there everything progressively has gotten better over TIME — it is a long process. I also had severe TED start about a month before the thryoid storm and RAI. Once RAI ablated my thryoid (confirmed by ultrasound) and I got regulated on replacement, it has been a matter of monitoring and adjusting. Correcting the damage to my eyes could not begin until the diseased thryoid was addressed and I got into the cold phase for at least 6 months, so saving my eyes was my urgency to get the thryoid under control — RAI was the quickest and most definitive solution for me — I was on Tapazole, betablockers and nausea meds to help during the process following RAI. I have not regretted it and have not had any problems because of it — so far. I am phsyically still not as strong as a used to be (pre-GD) but it keeps getting better.

[azroses2322]

in reply to: radioactive iodine treatment #1070957

I did not have any pain with the Thryoid scan or RAI. In both cases you are given a pill. For the scan they take readings at 3 intervals over the next 24 hours. From this they can calibrate the RAI dose. For the RAI they give you the pill and send you home. In the time of confinement after RAI, I was told to drink lots of water and flush twice with each trip to the bathroom. So the ice water was pretty much all I got down. I was tired and wanted to sleep. I had no dietary restrictions but since I had been so sick from being hyper, I was not interested in eating — I don’t know if that is normal. If she can and wants to eat you may want to be prepared with what she likes. She will need something to entertain her while not sleeping. You will need to use disposable plates and cups and plastic utensils for her to eat with. You will be given all of the guidelines when she gets the treatment, You can also ask the questions in advance so you know what to expect and how to plan for it.

[azroses2322]

in reply to: Graves, TED & temperature #1071412

The level of humidity has been my guage. I live in Ariz. and was originally diagnosed in June of ’07. My Opth. actually told me if I moved to San Diego or Portland, I would fell better. I had to live over a humidifier in the drier weather — I would rejoice when it was a cloudy day. After 6 eye surgeries and 2 years I am finally able to gain some normalcy. This weekend I was able to go out to the pool and get some sun and exercise for the first time in 2 years and actually see out in the sun (with sunglasses and a hat of course). I still avoid wind and fans. Another thing to consider is the A/C vents both in your home and the car. I had to keep the A/C in the summer and the heat in the winter from drying out my eyes. Cold weather did feel like it was freezing my eyeballs, maybe it was the exposed surface — safety glasses were a must. Also consider that when we read, we do not blink. So I was told to force my eyes to blink. Since I work on the computer, I was concerned about being able to continue to work with severe TED. My doctor told me as long as I look away every 15 to 30 min and force blinking and use lots of lubricant, as well as the humidifier in dry weather it would be OK. I learned to observe where the air/heat source is in any room I walked into and position myself accordingly.

[azroses2322]

in reply to: Problems with keeping food inside me #1071611

I see from your other posting that you are very hyper (very low TSH). I was also when first diagnosed and I also had the same problem (it had gone on for a month before the Graves diagnosis — nausea and diarrhea) and they did put me on nausea meds. I did stop eating for about 3 weeks and got in worse shape — so I don’t recommend it if you can eat — I couldn’t. I lost 32 lbs in 2 weeks and got so week and scared, I was afraid my body was going to shut down. I had to re-train my body to accept food — it was horrible. So please talk with your doctor maybe there is something he can give you to help. It is such a hard time in this hot phase to deal with everything. Please work with your doctor and if your insurance has health coaches — they are a good support to help also.

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