# Remission and my eyes...



## jezebel423 (Oct 16, 2012)

Hi All,

Approximately 2 weeks ago I saw my endo who declared that because I've had normal levels for approximately 5 months without meds, I am in remission. However, she hasn't tested my antibodies since last year- I have antibodies for both Graves and Hashi's.

Over the course of the last week, plus, I've noticed my eye symptoms acting up- particularly in the morning. My eyes are gritty, incredibly dry and my eyelids and undereyes swell. Today my eyelids are pretty swollen and puffy. I'm scared that this is going to keep progressing.

I've previously been to an ophthalmologist who suggested Restatsis so I'm thinking of going back and getting a prescription.

I guess my question is, if I have normal thyroid levels is there anything that can be done to prevent the eye symptoms?

Thanks from a Graves girl scared for my eyes.....


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## HotGrandma (Sep 21, 2012)

Uh oh when was the last time you had your antibodies tested, which ones and what were the results?


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## jezebel423 (Oct 16, 2012)

I'm not sure which antibodies are the issue with graves eye disease but these are my antibody test results in December.

Thyroid Stim Immunoglobulin	686 %	0-139 H 
Thyroid Peroxidase (TPO) Ab	103 IU/mL	0-34 H 
TSH Receptor Antibody (TBII)	1.0 U/L N 
Antithyroglobulin Ab 51 IU/mL	0-40 H


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## HotGrandma (Sep 21, 2012)

TPO and TSI play a huge roll in GED and also in remission. I don't have the link with me at the moment I will post it tomorrow. Here's the jist. The antibodies that attack the thyroid are the same antibodies that attack the muscles in the eyes. There is no medication to calm the antibodies. The report I have and its also in Alan Rubins book "Thyroid for Dummies" say that remission for graves isn't possible and will be short lived if the antibodies are still active at the time of withdrawl from ATD's (anti thyroid drugs). The time frame is 18 months to four years or lifetime on ATD before the antibodies calm before remission is possible.

Your antibodies were too high to withdrawl from ATD's even though your Free's may have been in range. And the frees have to be in range for you not necessarly in the labs range. This is done usually by taking the smallest dose (I have to cut the pills into quarters) to keep the Frees close without going hypo while on ATD's.

I question your doctors decision to discontinue medication and question if you truly are in remission with regards to your antibody counts.

Your Othhomologists is prescribing restasis. I was told it contains a preservative which will only make the eyes worse. It's also expensive and takes several months to work and only works on dry eye. After what I've gone through I would not recomment it. Your opthomologists should be checking the optic nerve and protrusion of the eyes within the globe and pressures. If your pressures are reasonable they can prescribe prednisone drops which can help.

There is another book by Elaine Moore "Thyroid Eye Disease". I highly recommend it. So I am speaking from experience and information from both books. As long as your antibodies are high they can attack the eyes and the only thing to put them in check is ATD. Some people without thyroid problems get TED (thyroid eye disease) and are put on ATD's.

Home remodies are rolling frozen grapes around on your eye lids. Ice, ice cold steeped tea bags. Eye drops that do not contain preservatives like Genteaal, refresh and blink. A thin covering of vasoline around the eye's and lids.

Your doctor can prescribe oral steroids that help but come with side effects. If you do a search on this site for Allopurinol there are several links. This drug helped me tremendously and without side effetcs.

There is no magic cure and my wand is broke to end TED. It has to run its course. There is a beginning, middle and end. Its your opthomologists position to monitor the eyes and take drastic action if warranted to save your eye sight.

I hope this helps. I went to 7 different eye doctors that were happy to take my money and prescribe restasis before I was properly diagnosed. When chosing an opthomologists make sure they are also an MD they are familiarized with health problems that cause eye problems. The problem here is that its the antibodies attacking the eyes not the eye's themselfs.

This is truly awful that you have to go through this. I hope you take my advise on the allopurinol as I feel its what made my eyes go cold.


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## Andros (Aug 26, 2009)

HotGrandma said:


> TPO and TSI play a huge roll in GED and also in remission. I don't have the link with me at the moment I will post it tomorrow. Here's the jist. The antibodies that attack the thyroid are the same antibodies that attack the muscles in the eyes. There is no medication to calm the antibodies. The report I have and its also in Alan Rubins book "Thyroid for Dummies" say that remission for graves isn't possible and will be short lived if the antibodies are still active at the time of withdrawl from ATD's (anti thyroid drugs). The time frame is 18 months to four years or lifetime on ATD before the antibodies calm before remission is possible.
> 
> Your antibodies were too high to withdrawl from ATD's even though your Free's may have been in range. And the frees have to be in range for you not necessarly in the labs range. This is done usually by taking the smallest dose (I have to cut the pills into quarters) to keep the Frees close without going hypo while on ATD's.
> 
> ...


You are correct about the Restasis; the patient should only use Lacrilube by night and moisturizing drops only by day. Blink, Refresh etc..

Thank you for all your help w/this...................


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## Andros (Aug 26, 2009)

jezebel423 said:


> Hi All,
> 
> Approximately 2 weeks ago I saw my endo who declared that because I've had normal levels for approximately 5 months without meds, I am in remission. However, she hasn't tested my antibodies since last year- I have antibodies for both Graves and Hashi's.
> 
> ...


HotGrandma knows her stuff; I cannot add anything. Your eyes are precious.

Is your Ophthalmologist Board Certified? 7 years medical school?


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## StormFinch (Nov 16, 2012)

You couldn't find a much better expert on TED than HotGrandma. She's has a long, arduous journey with her own eyes, bless her, and has had to learn the ropes the hard way.

One thing I did want to mention is that if you don't stay in remission for the Graves, do not let your doctor talk you into RAI. RAI tends to make TED worse rather than better. Your best bet is total thyroidectomy. I only had mild TED before my surgery but my eyes have calmed down quite a bit since then.


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## HotGrandma (Sep 21, 2012)

Andros I am surprised. I left out triggers. Oops. Occasionally after a hard day I would indulge in a couple classes of wine. Found it helped me sleep. Also found out that it was a huge trigger for me and made my eye symptoms much much worse. There are many triggers, stress, environmental and allergies. Aspertame is also a huge one that is in nearly all diet sodas and foods. Caffene, sugars, glutens can all make the symptoms worse. Why do I feel like the bearer of bad news. I always try to find something to be appreciative of in any situation. It does get better.


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## hyperinnyc (Apr 18, 2012)

Hi Jezebel,

1. HotGrandma and Andros know just about EVERYTHING.... ;-)
2. How long have you had Graves/Graves symptoms?
3. I woke up with puffy, swollen eyes one day.... and have had them for over 2 years now :-( Once Graves Eye Disease comes, it's here to stay for a while/forever (?).
4. Using Restasis for Graves Eye Disease is useless. Your eyes are dry and gritty because they are exposed, not because you don't produce tears. Just take OTC eye drops without preservatives as hot and andros suggested.
5. If you have mild eye problems look into herbs and supplements. Over the last few months I've taken a daily cocktail of bilberry, lutein, selenium and something else I can't think of right now. I think it was helpful. I've stopped lately and my eyes hurt worse so..
6. I don't there is such thing as remission, just a 'good spell.'

Best of luck!


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## HotGrandma (Sep 21, 2012)

Had an "ad-ware" attack my computer and ate my links. Here's one with regards to remission on ATD's http://www.academypublish.org/paper...ng-and-after-treatment-with-antithyroid-drugs


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## HotGrandma (Sep 21, 2012)

http://thyroid.about.com/od/hyperthyroidismgraves/a/antithyroid-drugs.htm


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## jezebel423 (Oct 16, 2012)

Thank you all for the advice. It's good to be able to go in armed with knowledge.

I was wondering if you have any advice on how to find a thyroid eye disease doctor? My endo recommended one, but as you all know I'm having issues with my endo and the doctor she recommended seems to be very horribly rated online.

I'm in the DC area.

Thank you!!


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## HotGrandma (Sep 21, 2012)

jezebel423 said:


> Thank you all for the advice. It's good to be able to go in armed with knowledge.
> 
> I was wondering if you have any advice on how to find a thyroid eye disease doctor? My endo recommended one, but as you all know I'm having issues with my endo and the doctor she recommended seems to be very horribly rated online.
> 
> ...


Jez. I went to 7 eye doctors that were all happy to take my money and schedule follow up appointments that had no clue why my eyes were so red, watery and bugging out of my head. Find an opthomologists that's also an MD. Ones specializing in lasik are also worthless. The ones that are also MD's have medical credentials and understand what that there is a medical condition causing the eye problems. Best of luck to you. 
hugs1


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## Andros (Aug 26, 2009)

HotGrandma said:


> Andros I am surprised. I left out triggers. Oops. Occasionally after a hard day I would indulge in a couple classes of wine. Found it helped me sleep. Also found out that it was a huge trigger for me and made my eye symptoms much much worse. There are many triggers, stress, environmental and allergies. Aspertame is also a huge one that is in nearly all diet sodas and foods. Caffene, sugars, glutens can all make the symptoms worse. Why do I feel like the bearer of bad news. I always try to find something to be appreciative of in any situation. It does get better.


Yes, yes, yes and yes to "all" of the above. Of course it gets better; maybe because it can't get any worse?? Little humor here.

One of the worst diseases ever. Up there at the top of the list.

But we made it! Yay for us!


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## gelf (Jun 20, 2011)

HotGrandma said:


> Andros I am surprised. I left out triggers. Oops. Occasionally after a hard day I would indulge in a couple classes of wine. Found it helped me sleep. Also found out that it was a huge trigger for me and made my eye symptoms much much worse. There are many triggers, stress, environmental and allergies. Aspertame is also a huge one that is in nearly all diet sodas and foods. Caffene, sugars, glutens can all make the symptoms worse. Why do I feel like the bearer of bad news. I always try to find something to be appreciative of in any situation. It does get better.


just a quick note on the aspartame -- they are putting artificial sweeteners in regular sodas and drinks too. Read the label. look for ascafame potassium, sucrolose, erythrotol, or similar. i cringe every time i see a mother letting their children drink those juices that have the artificial sweeteners in them, thinking they are better than the sodas. i know they are prepping them for a hugh increase in diabetes later one.


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