[anniekate]

#1019460

my doc hasn’t sent me to an eye dr yet? I am having a lot of trouble with both eyes. Itchy watery, buggy! blurry. I was told that the skin lumpy bumpy rashy is because of the thyroid and the immune system. Rare, so of course its happening to me! ha ha………I got some Amlactin cream from my Pharmacy so far it is helping a little. But I am concerned for my eyes. What should I do? Anniekate

[mamabear]

#1071769

Do you need your Endo to refer you to an eye dr? I am not sure they have to do that so I would find out what kind of ins. you have and what it covers for eye dr’s and go see one on your own. There are dr’s out there that specifically deal with Graves patients and TED patients at least here in NJ they do. So call around and ask if they do first so you don’t waste your time in going. You can always go to an optometrist first and see what they say after they do an exam on your eyes.

Your endo If that is the person you are saying hasn’t referred you yet to an eye dr., is the one you are seeing about your eyes, I would see an eye dr. first because they have the equipment to look inside and see if there is anything going on and suggest things to you. They can also dilate your eyes to make sure all is well in there so make sure you have someone with you to drive you home OR are at a place you can hang out for a while in. My optometrist is at my walmart so it’s very convenient for me (cough cough cough ehem ehem….sneaky sneaky!! LOL). They can tell you if its allergies to something or something more than that but at least they will be able to give you a more advanced exam than your endo can.

[Buttamama28]

#1071770

I know the feeling. My eyes have been watering uncontrollably lately to the point of carrying baby wipes. I have had a rash on my face for months now. I was also told it was because of my thyroid. Did you need a prescription for that cream?
Buttamama

[Jake_George]

#1071771

It is a great idea for all newly diagnosed folks with Graves’ to have a good eye exam. The doctor can use that as a base line to see if anything changes later.

The dry eyes and tearing is because our tears change when we have Graves’ disease. They become thin and do not stay on the eye to coat it and keep them wet. That is why our eyes run so much. We produce more tears to keep the eyes wet, and the tears do not hold on to the eye so it gets dry. The dryer they get the more tears are produced.

Good rehydrating eye drops are a must. They keep the eyes moist and stop or slow down the excess tear production.

I had the rashes too. I had a prescribed steroid lotion to rub into my skin and it worked amazing to get rid of the rash and insane itching I had.

Hope this information helps.

[reneedrew]

#1071772

I was diagonosed with Graves approximately a year ago. I gained about 40lbs after I was put on methimazole. After trying to deal with that I noticed my skin was dry and had a rash similar to eczema on my upper arms. THEN about 9 months ago I started having trouble with my eyes, it was somewhat gradual. First I had one eye look like it was drooping, then the other one started bulging, massive watering and pain from the pressure behind my eyes. I was sensitive to light,air, everything. I went to an opthamologist and got and MRI since I was also having double vision due to the pressure. In the MRI it showed that there was a lot of fluid and fat being deposited into and around my eye sockets:( The opthamologist informed me that we would have to wait for the swelling to go down wich could be quick or take a lengthy amount of time. He didn’t want to prescribe steroid eye drops due to the side effects and really didn’t give me other options. I was/am very frusterated with that since my eyes look horrible. Its been 6 months and I’m due for a check up to see if the pressure has gone down. I would like to have surgery to restore my eyes for aesthetic reasons but the opthamologist told me if they do it too soon it could cause scarring and more operations could be necessary. I’m at a point I just don’t care, i just want to get back to normal somehow someway. The sad thing is I was never even told by any of the doctors about thyroid/graves eye disease. I would reccomend to anyone to get on it asap when your eyes start acting up with Graves disease. My swelling has gone down somewhat but there’s still bulging,etc. I opted out of RAI at least at this point. I then learned that even if you do get it the eye disease could flare up anyway since it acts independantly even when you have your thyroid under control. Its amazing the lack of information out there. I went to an endo at one point and was told that I either had to have the thyroid out or radiated and those were the only logical things for me to do. I didn’t go back to him and have discovered that in my community the docs are not knowledgeable about this disease. I tell them stuff they don’t know about it all the time. All this to say I’m frusterated and don’t take the eye problems lightly. And does anyone out there have any advice for myself? Thanks for your time.

[anniekate]

#1071773

Oh thank you all so much for your replies. I am in California, and seeing an Endo. He mentioned sending me to the eye doc, because last month I developed a cyst on my right bottom eye lid. Freaked me out!!! So go tomorrow for my once a month (so far) exam. He takes labs everytime the Friday before to check my Thyroid and other stuff. I developed this skin thing during this last month inbetween visits. The pharmacist recommended Amlactin lotion and it has helped some. You have to ask for it behind the counter but don’t need a scrip for it. She also recommended Aveeno or Lubaderm. My Endo had given me 5 days of eyedrops with an antibiotic and steriod in it, but thats it so far. As far as insurance goes I recently lost my job so it has been all cash and quite expensive for the visits but cheap for the Ptu and atenolol. I was allergic to the meta. I guess the eye specialist will break the bank! LOL So will let you all know how it is going. Thanks again for your replies. Its nice to have you all to talk with. I am still trying to get my head around all of this. My husband and I are caregivers for his elderly parents and don’t have much time for ourselves. My Father in law has been in the hospital because of a bad fall that nearly killed him. We are on the other side of that now and so I can focus a little more on my own health. Glad I can come here.

[azroses2322]

#1071774

Hi Reneedrew, Your posting in response to Anniekate, sounds so much like where I was at a little over a year ago so I wanted to respond with what I learned, this may also help Anniekate with regard to her eye issues relating to Graves. I agree, I could not get much info from the doctors in the form of what to expect and when. As you read my experience please remember everyone is different – you need to make informed decisions with your doctors. Also that Graves eye problems and their options for correction will vary from person to person and the results will also vary and even vary from eye to eye in the same person. First of all, I believe your doctor is correct, there is probably no responsible eye surgeon that will touch your eyes until the swelling behind your eyes goes down and your thyroid is under control for at least 6 months – no matter which route of thyroid control you have chosen. I did the RAI because my eyes were so out of control and everything was happening so fast. I had gone into thyroid storm and it was becoming critical, even life threatening. I wanted my thyroid out of there and they would not surgically remove it because they said that would kill me – so RAI was the best way to go – for me. As for the eyes — I hear and feel your frustration. I have been there and no matter how much noise I made and complained about my eyes they would not and COULD not do anything until there were sure the swelling behind them was down (meaning the bulging had stopped progressing and they had sunk back in as far as they were going to) after the thyroid was under control. I was told up front with regard to the bulging, 90-95% of the time they will sink back in. Being told your eyes have to wait for the optimum time did not help me and probably does not help you now. I hear you say “I don’t care”, but remember you do not want to make it worse by having someone trying to fix a MOVING TARGET and until the impact to your eyes settles down that is exactly what you are dealing with. Until then, please concentrate on protecting your eyes. I learned a lot of survival skills for my eyes. If you have not already found it, please look at my response to the posting from 4/9/09 from lakeview, titled,“How bad is bad eyes?” . In my response which is on the 2nd pages of list of responses, I shared (in 2 responses – there is a long one and a short one) some of the things I learned about how to take care of my eyes from my doctors and health coaches and others that had survived this. I had the bulging, the dryness, the sensitivity to light (I did not drive at night for over a year), my upper and lower lid receded so that all the white was exposed and I could not close my eyes (the rt eye worse than the lt), watery eyes (from the dryness) and along with all of this there was a lot of eye fatigue failing vision (blurry and double vision), and I could not look up or track side to side. And then on top of all of this, my eye pressure begin to increase (Glaucoma) – we hope is Graves related and that it may recover. All of my eye problems had started in May 2007 with puffiness in the mornings around the eyes and progressed from there through all the phases and stages of Thryoid eye disease. My eye symptoms finally led my PCP to send my to ER and led the ER doctor to diagnose Hyperthryoid and 5 days later I was back in thyroid storm. The eyes along with the physical impacts of the disease left me deformed and disabled – I was so weak later in the year after extreme hypo thryroid, I could not climb the stairs and had to hold onto the walls to get walk around. All along with my eyes, I was literally afraid I was going blind. When I went into Thyroid storm , they diagnosed Graves with the uptake test and then did the RAI that was in June 2007. I was seeing an Opth because of the early symptoms of puffy eyes (starting in May) and once he had the Graves diagnosis, he began the monitoring of my eyes with that diagnosis. He had me on Lotemax and he kept checking the swelling behind they eyes and checking the pressure in the eyes. He also monitored the dryness and watched out for any cornea damage. He taught me about lubricants and how to take care of my eyes until all of this was under control. My Endo would/could not address my eyes only the thyroid and my PCP left everything up to the Endo and the Opth. So my Opth was my lifeline for eyes. The things I listed in that other posting were what I learned as survival skills, my situation was so bad that I literally had to withdraw into a controlled environment to save my eyes – everything affected them and I had a lot of eye fatigue to the point that when it was at it’s worst, I was spending 12 to 14 hours out of every 24 hours shut down with ointment and a mask. I was able to continue to work by telecommuting and I had no other life, just work and protecting my eyes 24/7. By Dec 2007, I had gone from Hyper and thyroid storm thru RAI and thru extreme Hypo (they let it go way too far) and then been put on replacement in Sept. and finally (in Dec.) had gotten my first normal thyroid level lab reading. My physical condition was devastated, from the impacts of the disease, but all I cared about was my eyes. In Jan. 2008, my Opth. asked if I was ready to look into surgery — the swelling had gone down and the bulging had receded (as far as it was going to go) and I was 6 months post RAI (they killed my thyroid) and my endo confirmed it with ultrasound. Back to the eyes: If you want to see what Graves can do to your eye muscles, I recommend that you order Bulletin #12 from this site – titled “Anatomical Pictures of Normal vs. Graves’ Eye Muscles”. It really shows why your eyes are bulging and hurt. It was an “eye opener” for me to see this – I said “no wander they hurt”. From my experience and the options I was given working with 3 Opth. eye surgeons, I have concluded that the eye surgery options to fix the impacts of this disease that I investigated were in 4 areas: 1. Orbital decompression (which I did not have since mine had sunk back in far enough for my facial structure, even if they are not as deepset as they originally were). 2. Strabismus (to fix the eye muscles so that you can move your eyes and they track evenly side to side). 3. Lower the upper lids that have receded upwards – without upper lids my eyes were not getting the benefit of the tear producing glands under them. 4. Raise the lower lids (they have to rebuild the struts of the lower lid where the muscles were destroyed by the disease – they use implants to do this). Without lower lids, all the moisture my eyes can produce or I put in my eyes just ran down my face. Prior to the surgeries, they put in PUNCTUM Plugs (lower only) and they helped tremedeously. I still have them. I have now had 6 eye surgeries and I have 2 surgeon specialists (in addition to my main Opth) that have performed the 6 surgeries according to their specialty: 1. Strabismus was done by a pediatric eye surgeon, and surgeries 2 -6 done by a Opthoplastic (sp.) eye surgeon (he does cornea transplants and eye plastic surgery). I live in a large Metro area and still have to travel across town and go out of Insurance network to get the second surgeon with the speciality and experience with Graves. With each surgery, the doctor told me of the risks and it is a lot including the one that scared me the most (blindness) and he warned me that he will make the adjustment on the conservative side because it is easier to add a little more if needed than to correct in the opposite direction – also there is more risk with each redo because of scar tissue (so this brings us back to the start of this response — why they do not address eye surgery until you are stable). My first surgery was March of 2008 and my 6th surgery was Monday (April 2009) of this week and I am hoping it will be the last. I kept a picture diary of each phase of my Thryoid Eye Disease journey – the bad and the ugly (the good was the pre-Graves pic). It started by accident because I could not believe what was happening to me and then I continued it when I found it helped my see the progress and gave me hope. If you want any more details or information about my experiences (eyes surgeries or anything), please let me know. Please take care and realized there is light at the end of the tunnel it just takes longer than any of us want.

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