# Eye problems



## Pamala (Feb 19, 2013)

Hello, could any of you with eye problems please share your experiences with me? My eyesight is getting worse and worse. I go back to the eye doctor in May, but would like to go with a list of questions.

Thank you.

Pam


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## HotGrandma (Sep 21, 2012)

Sorry you are dealing with this it is horriffic. I googled ugly diseases and it came back there is no such thing. I beg to differ. This medication has helped me a ton.

http://www.thyroidboards.com/showthread.php?t=7005

April 2011 my right eye was red and irritated like something was in it. Dr. said it was dry eye. A couple months later the left eye began to swell. Couple months after that the swelling was so severe my eyes popped outta my head. Constand watering, swelling, pain. It was so bad that my own tears burnt my face.

Went to 7 different eye doctors before I finally had a diagnoses as Graves Eye Disease, TED or GO. Basically when they're hot they're hot and have to run its course. Ice packs, cold tea bags (camimile is the best). I liked the frozen grapes, you could rum them around on the eye lids.

Another thing I did was put vasoline on my eye lids so when I had to blot the tears it wasn't irritating the skin. My Ophotmologists said that was great cause petrolemum jelly is used in some of the night gel's. Been using vasoline on my face not for a year and its taken out lots of wrinkles. Bene.

Eye drops that do not contain a preservative or that are not for red eye helps. Avoid, smoke, alcohol, aspertame, asprin, antihistamines, and anything your allergic too. These can trigger GAG and make it worse.

Find an Optomologists that is also an MD to monitor your desease and optic nerve. Vitamin B2 is also recommended.

Other than that, my eye's were hot and miserable for 18 months. Within 2 weeks of doing the Allopurinol they started improving. Also prednisone did help with the swelling, but the allopurinol took the hot out.

Best to you. What are your lab? I have read that you need to be in the normal range for the disease to slow down, this was not true for me, because in hypo hell my eyes still went cold. Please post your labs with ranges.


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## Pamala (Feb 19, 2013)

Hello HG! Thank you so much for your response. I know all about the swelling and dry eye.

I don't know what my labs are. If I ask my doctor she will print it out for me next time.

My story is:

I went to the doctor with a general feeling of not being well, of being tired. She ran several tests. My thyroid wasn't working properly, but it was nothing to worry about. It was so mild that medication wasn't needed. It reached a point where I was so tired that I felt like crying. Brain fog was creeping in.

At that point I went back and asked for a medication trial. It was simply amazing what a difference it made. From what I understand I take a minimal amount compared to others. (50 mg Levothyroxine) That was last fall.

In January I went to the doctor because my eyesight was deteriorating. She sent me to the eye doctor. (The Dutch system is that everything goes through your GP) I was seen by an optometrist in the hospital. She examined me and called in the eye doctor. She said she had several patients with thyroid problems, and come back in May. Let me just say that I was in SHOCK! I had no idea the two were related.

My thought had been that my eye problems were perhaps related to my medication.

Looking back, my eyes were getting worse long before I had medication. Over a year ago my 'new' glasses were not strong enough within a few weeks.

My dilemma now is that my GP says I couldn't have Graves (because of the problems with my thyroid are different) and the eye doctor says I have beginning Graves.

The optic nerve in my right eye is being compromised. That is one thing they want to look at in May.

Meanwhile, I need new glasses, but how often will I need new glasses? Money doesn't grow on trees!

Do you wear glasses? When the inflammation stops do your eyes go back to what they were?

Thanks again for helping me.

Pam


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## Andros (Aug 26, 2009)

Pamala said:


> Hello HG! Thank you so much for your response. I know all about the swelling and dry eye.
> 
> I don't know what my labs are. If I ask my doctor she will print it out for me next time.
> 
> ...


I am sorry that your eyes are being affected and how very much we all appreciate HotGrandma who is having a very bad time of it but yet has time to help all who come here.

TSI and the eyes
http://www.ncbi.nlm.nih.gov/pubmed/1677484

http://www.caleyes.com/webdocuments/...ease_paper.pdf

http://www.kellogg.umich.edu/patientcare/conditions/graves.disease.html

Hope you find the above links helpful. In the meantime, put ice packs on the periorbital area and sleep with your head elevated a bit. Use lacrilube at night. And only moisturizing drops by day.

Keeping you in my thoughts and prayers for all this.


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## HotGrandma (Sep 21, 2012)

Pam

Yes I wear glasses. I prefer contacts but that's history now. My prescription went up one power in my left eye and 2 powers in my right eye since graves. My eyes were so swollen that I could not feel the bone above or below my eyes. My right eye doesn't feel like its in the same position since it settled back in my head. My right eye points towards my nose and down. That eye lid doesn't cover that eye well cause its positioned differently now. Everyone is saying that my eyes look so much better. Pictures taken before graves show a big difference. There are fat pockets on the bottom outside corners and above the top lids just below the brow bone. Won't be putting makeup on there anymore.

Yes they said my optic nerve was in danger too. My pressures were 31 and 33. That's when I started prednisone drops which made the pressures worse. At 40 you can go blind. My Doc then prescribed oral prednisone and allopurinol. My eyes went immediately cold 6 to 8 weeks. The right eye felt like the car was put in park when it settled.

If I had it to start all over again I would get on Allopurinol immediately. Elaine Moore's book "thyroid eye disease" also recommends Allopurinol. I truly feel if I would have got on this sooner I wouldn't have the problems I am facing now because of GED

Thanks Andros. How R U? Happy Pattys Day


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## Pamala (Feb 19, 2013)

HG, you have really had a hard time. It is very generous of you to share your experiences with me.

I too have those 'fat pockets' above my eye, but they aren't really fat. In the morning they are resting on my eye lashes. In the evening they have retracted and I have eyelids again! It is all very strange.

I had bursitis in my hip a few months ago and was given ibuprofen, which is an anti inflammation drug. While on that my eyes improved. when it was so bad last week I decided to self medicate, with a very low dosage compared to my hip. It helped!

That is also on my list of questions for the doctor.

Take care of yourself!

Hugs, Pam


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## hyperinnyc (Apr 18, 2012)

Hi Pamala, I have eye disease (due to Graves/hyper) going on 2 years now. I went to bed one night looking normal and woke up the next morning with swollen eyes and I thought it was because I didn't get enough sleep - 2 years later I am still looking like this. Then they began to hurt, then I couldn't see, then I looked shocked, etc. I have glasses now (always had 20/20 vision) but also I wear them to hide the swelling. I see an opthamologist every 3-4months for measuring of stuff but I have not been advised to take an medications for them. I go back in July for a final measurement before being considered for eyelid surgery. They feel a little better now that my thyroid is removed but I am pretty sure they won't pop back into their head without being forced to lol.

Grandma - who prescribed the allopurinol (endo, optha, GP)? I looked it up but can't find anything about it being used to treat TED. Do you think it was the combination of that and the prednisone? I am afraid to ask for a steriod since I don't have a thyroid...


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## HotGrandma (Sep 21, 2012)

hyperinnyc:

http://www.ncbi.nlm.nih.gov/pubmed/14757966

http://www.expertmapper.com/go/graves+ophthalmopathy/-gpearth/-vTbAdv/-e151-175

Both these links discuess oxidative stress with Graves Disease. The Allopurinol deals with the oxidative stress. I just finished reading Elaine Moore's book on "Thyroid Eye Disease" which she advocates Allopurinol as a treatment without side affects.

When my Doc got the report from the opthomologists that said my pressures were that high, that my optic nerve was in danger, plus the referrals for multiple surgeries he took a good look at my eye's and agreed something had to be done soon. They were that way for over 15 months.

I was put on steroids for an absessed tooth and it helped with my eyes. I showed Doc the difference after 5 day's on steroids, thats why he prescribed both.

Pamala:

Is there an optical store that does the two for one eye glass sales. If so have their doctor do the exam for your prescription. If it changes within a year they usually redo the script at their expense. Also, I believe its call zapos on line eye glasses. Have friends that have bought from them, real cheap and they love them, so they have multiple pairs from them. America's best did my script twice then did the script my optomologists wrote and I only paid for the first pair.


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## Pamala (Feb 19, 2013)

Hyperinny, Thank you for sharing your story. It is incredible it happened over night.

So far my eyes are different sizes, but I've always had big eyes so it is more a matter of my left eye being swollen smaller. My eye lids are larger though. It is a bizarre disease.

I wish you well!


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## hyperinnyc (Apr 18, 2012)

So after following some of hotgrandma's links and doing more research I've decided to go back on the natural meds/herbs path to try to help my eyes. I'm hoping that none of the stuff worked before because my thyroid was crazy, now that it's gone - wish me luck!

Today I'm starting on a regimen of bilberry, lutein and selenium. I'm also going to stop coffee (pray for my coworkers) because the caffeine has been linked to exacerbating the problem.

I will keep you fellow eye sufferers posted!


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## jsgarden1 (Aug 29, 2009)

I'm interested to see how it goes for you hyperinnyc. I've had TED for almost 3 years now. My eyes aren't terrible, but they aren't perfect either. I think the TED has halted now. It hasn't gotten much worse in about 2 years. Once I get my TT, I may try what you are doing. My hubby says when I get mad, my eyes look like they are going to pop out of my head lol. I try and not get THAT mad )


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## HotGrandma (Sep 21, 2012)

Eye muscle surgery scheduled for 5/02/2013. The surgeon agreed that per her measurements the eyes are cold. Maybe now I'll quit running into door jams or stepping off steps that arnt there.


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## Pamala (Feb 19, 2013)

I am pleased for you Hot Grandma!

jsgarden1, Thanks for responding!


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## Andros (Aug 26, 2009)

HotGrandma said:


> Eye muscle surgery scheduled for 5/02/2013. The surgeon agreed that per her measurements the eyes are cold. Maybe now I'll quit running into door jams or stepping off steps that arnt there.


Thank the Lord and do the Snoopy!!!









http://www.nhlcyberfamily.org/special/happydance.htm

Boy; I know all of us are just thrilled to hear this!! Whooooooooooooohoo!


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## hyperinnyc (Apr 18, 2012)

That's great news!!!!!!!! Please keep us posted!


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## kathlav (Mar 26, 2013)

Best wishes Hot Grandma,

what a relief for you,shall be thinking of you.x


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