# Graves Eye Disease?



## Erinc

I just had my RAIU and scan yesterday and waiting for my results. In the meantime I have a question regarding Graves eye disease. Is this something that happens gradually or over time? If your graves disease is well controlled, then will you have eye problems(bulging eye) etc? Does everyone with graves disease have eye problems?

Thanks for your help.


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## webster2

Hi, & welcome!

I am a newbie to this too. I think that some are very fortunate, and don't get the eye involvement. Someone with more knowledge will come along, and give you the real details. :hugs:


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## desrtbloom

Hi Erin:

No, not everyone with Graves' ends up with Graves' Eye Disease. Some people never have issues and other people do. You can have out of control thyroid levels and have it or have perfect levels and have it, etc. It is important to make sure you have your eyes checked now and then annually. If you have GED, it isn't recommended to have RAI as it has been found that the RAI can cause more GED problems.

I have GED issues, but my sister who has had Graves' for over 20 years doesn't. So hopefully you won't have any. And yes, it is a gradual process. You don't just wake up one morning and your eyes are bulging. And if you have bad bulging you will know it because you will have pain and pressure. The best precaution to catching any type of GED before it gets bad is making sure you see your eye doc regularly.

Good luck hon.  I wouldn't stress on it.

:hugs:

Patti


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## Erinc

Thank you for your input. The reason I ask is that my left eye has been hurting the past couple of days. But just the left corner of my eye. The white part of my eye looks like there is a little blister. I am going to see my eye doctor in the morning.

Desertbloom, you mentioned that RAI will further irritate GED do you mean the RAI treatment for thyroid abblation or the RAI uptake and scan too?

I haven't been officially diagnosed with Graves disease but it's what the doctor suspects. I should find out tomorrow or Friday. This has really thrown me for a loop. I'm sorry for those are going through this too.


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## Andros

Erinc said:


> I just had my RAIU and scan yesterday and waiting for my results. In the meantime I have a question regarding Graves eye disease. Is this something that happens gradually or over time? If your graves disease is well controlled, then will you have eye problems(bulging eye) etc? Does everyone with graves disease have eye problems?
> 
> Thanks for your help.


GED (exophthalmos) is one of the 4 clinical criteria for Graves'. GED is insideous. It sometimes starts out with floaters, flashing rings, frequent lens changes, periorbital edema, headaches, photophobia, lid lag and then retraction later on, bags under the eyes etc..

Here some info which I hope will be helpful.

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

Have you seen an Ophthalmologist?


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## Erinc

Andros, if your thyroid levels are well controlled will you still have eye problems?


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## Andros

Erinc said:


> Andros, if your thyroid levels are well controlled will you still have eye problems?


I am in favor of keeping the TSH suppressed to keep the antibodies quiet if not totally undetectable.

This seems to go a long way in preventing eye problems. This is a very very complicated field of study and sadly, it is possible to still have problems with the eyes after RAI or ablation.

Here is some info which I do not pretend to understand completely but it will give you the gist of it.

http://endo.endojournals.org/content/147/1/9.full


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## Erinc

Andros, I got my thyroid scan results and it stated that there was increased activity suggestive of Graves disease. I meet with my endocrinologist on August 8th to discuss my options. I have started on Tapazole. Is the TSI antibody the one that causes eye disease? Thank you for your input.


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## AZgirl

TSI indicate the antibodys inwhich we have... to lower those,you need to be on anti thyroid meds. My eyes did bother me a bit in the beginging, (like someone tugging on them) once i was mismanaged with meds FIRST ENDO TOOOO HIGH DOSAGE, then i switched endos and lowered, once i finally got in a good range the eyes pain is gone! This is the reason i am so scared of RAI. Uptake is just the small dosage of radiation to test for graves... the ablation, or full blown RAI is a high dosage of radiation to kill the thyroid---not the disease... This is the reason some people end up developing eye problems, because it no longer has the thyroid to attack, so it now is attacking behind the eye... HOWEVER, THIS DOES NOT HAPPEN TO ALL. but i personally wont have RAI... To be honest, it might be a tough road, like i had with meds to get to a good place. I had to be consistent with docs that i refuse RAI. 3rd endo has now gotten me almost to remission!!! I can not wait to get my remission labs and throw back at all those docs who told me meds will never work!!!! i know have an endo who asked me to come in with a few of his patients to help him understand TSI levels !!! ahhh hello,, go back to school! Good luck Erinc to answer the eye problems, I too am still a canidate for it to happen at any time,,, the only clear way im out, is to get those antibodys (TSI OR TRABS) GONE


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## Erinc

AZgirl, thank you for responding to my questions. I've been hyper for about 10 weeks now and just diagnosed with Graves this week. It is just overwhelming for me right now and at times I just want to cry. I've always been so healthy, at least not any major chronic issues. I had a baby 6 months ago and was planning to have a wonderful summer with my baby and my 6 year old daughter. But i've spent the whole summer feeling terrible and now being diagnosed with Graves. I am absolutely terrified of developing eye problems.

So, taking the anti-thyroid med and getting my levels normalized will make the TSI antibodies go away too? I am totally against RAI ablation at this point. I'd rather have surgery than do that.

Thanks again for your help. This has really thrown me for a loop.


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## Andros

Erinc said:


> Andros, I got my thyroid scan results and it stated that there was increased activity suggestive of Graves disease. I meet with my endocrinologist on August 8th to discuss my options. I have started on Tapazole. Is the TSI antibody the one that causes eye disease? Thank you for your input.


All antibodies involved w/ the thyroid can attack the eyes as the eye and the thyroid gland shares a common antigen.

"An antigen is a substance/molecule that, when introduced into the body, triggers the production of an antibody by the immune system."

That would involve TSI, Trab, TBII........................all of them. Sadly.

And don't mess around w/that blister. That is your Sclera.
http://www.google.com/imgres?imgurl...a=X&ei=MvcqTsHLL8K1tge7ttnXAg&ved=0CCMQ9QEwAQ


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## AZgirl

The best route is to find an endo (and good luck with that!!!!!) who is willing to do whats called block and replacement~or also called add-back... this is when you get on a higher dosage of MMI (anti thyroid med) this is called the "block" part. So you dont go hypo, inwhich most every case does, a good endo will add Synthoid or Levo... this is the "replacement" part. In a nutshell, the more your MMI the better chance of getting rid of those antibodies!!! but you need something to make you not go graves coma (so i call it) This is been proven to have a much higher remission rate. Just sometimes it may be a long road. First thing you need to get in order is your FT3 (<--get that done too) FT4 and your TSH.... all in range. and when i mean in range, i dont mean the little guidline ranges they give you!! each one of us varies. I personally do best when my 3s and 4s are in the middle to upper half. KEEP in mind, TSH will go up as the 3s and 4s go down. However, many docs adjust meds by TSH alone... RED FLAG TO THAT. sometimes it takes TSH months to even a year to move!! so if you happen to be a person that your 3 and 4 move fast but your TSH is on a stand still, you doc might think your still hyper, inwhich your not...many doc will add more MMI and you will get sooo hypo you feel that graves coma... this is what my first endo did!!!! PLease give it all you got to stick with meds, to rid those antibodys before you do RAI or surgery. Be strong because there are many doc who encourage RAI.... I fought them all! Now my specialist is in Florida (im in AZ) and this man has me close to remission... and fully agrees with everything i just told you.. His own mother had GRAVES and he put her in remission as well. I am on another board and i can tell you there are many people who survived the "doc know best" and went thru 4 -5 endos to do what i just said... What i regret most is that if i knew now what i didnt know then, is i would of never allowed myself to take more then 10 mgs of MMI. I also know now from my awesome doc in florida, i never needed to do the uptake either to prove i have GRAVES (which is also a very tiny bit of radioactive junk) all i needed to do was take a TSI or Trab or any antibody blood lab.


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## Erinc

AZgirl, thanks for this information. I'm going to print out your response and read it over again and have my questions ready for my endo. I am in ALabama and will be seeing an endocrinologist at UAB. I hope he will know about this. I am currently on Methimazole 10mg 3 times a day. is that a high dose? Who is your endo in FL, if you don't mind me asking?


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## AZgirl

Dr scott vanlue.... he is NOT an endo, not to scare you, but he has excellent knowledge of all auto immune disorders... thanks to his mom. I acted like i didnt know better, and let him do the talking,. he was the first to tell me everything that i already knew. I have tons and tons of emails from others who went to him, trying to convince me to go to him. I was very worried going so far to see him. but i only have to see him 1 times every 2 years. we do all things thru phone. He sends lab requests and then calls me back to adjust... this is where i pay per phone call ~unfort. my insu does not pay out of state! but i do trust in him, fully!! if i remember correctly your story, you just got diagnosed and just been having symtoms recently,, so my guess you havnt had super long... im not very familiar and could be giving incorrect suggestions about this, but ask about checking out for 
Neonatal Graves' Disease
http://thyroid.about.com/b/2010/06/15/neonatal-graves-disease-hyperthyroidism-newborn-babies.htm
im not very familiar with it, but it gets thrown around in my other board quite often... its just a FYI


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## AZgirl

woops, somehow a few words went missing in my last message.... i think you said you recently had a baby. i just wanted to send you some info that i briefly read, not paying to much attention to it because it didnt apply to me... but take a look at it since your new.


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## AZgirl

ouch, maybe i should of read it first before sending it, if i just read that right, the baby wouldnt of went full term... sorry, told you i didnt pay full attention to that conversation. woops however, i read more on different sites, so look them up and discuss your graves with the babies doc, just incase.


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## Erinc

AZgirl, thanks again for the info. My daughter was born full term and as far as I know I didn't have symptoms when I was pregnant. I was tired but pregnancy related. My doctor check my heartrate at every check up and it wasn't elevated. I started getting the symptoms when my little one was about 3 months old. I knew to check on it because my sister was hyper after she had both her boys. Her started at around 5 or 6 months post-partum. But hers went away after about a year.

My baby has a appt on monday with her pediatrician so, I will definately let her know.


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## AZgirl

I have also learned just by listening to others discuss this, that a lot of graves patients go into remission during time of preg. but return once the baby is born... IDK just mentioning, and i think just mention to the pediatrician, just for future, incase. But im sure it must be all ok  how long you been on MMI? i was on high dose approx 3-5 weeks before i developed a bad rash, severe.. My 1st endo said "see, i told you, you need RAI and your body can not tolerate meds! she set me up an appt to have RAI done, i said goodbye and also did a no show to my RAI appointment! I lowered my meds myself and went to endo # 2.. i dropped to i think 25 mgs... still very high! within 6 weeks i couldnt wake up! my numbers were sooo bad! sooo hypo... keep an eye on those numbers dropping!


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## AZgirl

ohh and i forgot to mention, i went to the mayo clinic of AZ who is supposed to be so on target with things,,, they never heard of block and replacement! they gave me their advise,,, "RAI" ,,,,, so i said goodbye to them... now im happy as a pig in %&$# that i listened to myself and others who put themselves into remission! and dont think that i wont send all my reports back to all my endos who SWORE i am going about this the wrong way!!! its ganna happen LOLOL


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## Erinc

I just started taking MMI on Thursday after my RAIU and scan. So just 3 days. How long have you had Graves? Are you in remission yet?


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## AZgirl

NOO no remission yet. I found out i had graves last aug 2010... i still need to drop my antibodies lower before calling it a remission. my FT3 and FT4 are in a great range... and i feel perfect. I am going to ha ve to up my MMI and more hormone so i dont go into GRAVES COMA again... that was just horrible. (this is that block and replacement) Im getting very close, but i still will stay on meds for a least a few years before going off anyways, just to be sure. that is what i was told by others who went this route. Well, keep us posted on things. Hopefully your endo will lower that dosage, either way, if you develope rash what i did~because i was still refusing any other treatment. I lowered my dosage myself a little and took a benedryl everyday until my body adjusted. I spoke with 3 diff. pharmisists who all said that would be ok. Then, i weaned off benedryl along with having a lower dosage, and within a week, things all cleared up... but that was cause i was on 40 mgs. and i weighted in at a 120lbs if that!


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## Erinc

AZGirl, I just got my TSIab result today. It is at 598 (normal 0-139) My left eye has been bothering me for about a week now. No bulging, that I've noticed. I'm gonna go see an opthamologist next week. What can they do? Will they be able to tell if it is starting to bulge? I am soooo terrifed of having the eye disease.

Thanks,


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## AZgirl

well, when my TSI was up that high, well, not that high, but close to it, my left eye was bothering me too!!! as soon as i got on MMI and my levels came closer, like within 2m onths my left eye, too, stopped bothering me. I never went to the opthamologist. I honestly was scared,,, i have an eye thing phobia!! i know, crazy. But like i said, after about 2months, it all disappeard. I do know from what others say, they used eye drops and sometimes the eye doc gives some sort of styroid of some sort for the eye. I had NO bulge either. Your TSI is quite high, and thats why you are feeling it. Meds get those TSI lowered... it cant hurt to have them look at your eye (so they told me, but i chickened out) just to be safe. But i will say, this was the reason why i wouldnt do RAI... there is a slighter risk of TED after RAI and knowing I had an eye issue, I knew that if i killed off my thyroid, the antibodies would go to the eye next. to me it was like a warning! I swear to you, all i did was get those antibodies down,a nd it hasnt hurt since...I was soooo worried about the eye bulge it wasnt funny!!!! i even heard of people getting there eyes bulgy and when their antibodys lowered, they eventually went back... your goal is to get them down asap.. unfort. thats with higher dosage of meds. but this is where you can get soo hypo,, and you need to have an endo who is willing to give you addback (block and replacement)


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## Erinc

AZgirl, you have been a huge help. I too am terrified of having eye problems. I regret not starting medication sooner but I was nursing at the time and needed time to wean my daughter. My sister had hyper after both her pregnancies but went away so I thought mine would do the same. I guess mine is more severe. It's encouraging to know that your eye pain went away. I hope mine does the same. Is my MMI dose enough at this point? I am sooo ready to see the endocrinologist. I've got another week and a half to go. I am going to see the opthamologist on Aug 4th. Does your antibody level predict severity of eye problems? Just curious.


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## AZgirl

From what i understand, the more antibodys we have the more sever we have the disease. The more we have the disease the more it cause damage anywhere. It can cause thyroid, heart, skin and eye damage. Maybe more but those ones are the ones getting thrown around the most. Once again, from my understanding this is why i dont want RAI, because we are killing off the thyroid (and its a shame because its the victim not the problem) anyways, in doing so, we take care of the thyroid but the antibodys are still there. Since there is no thyroid to attack, what will it attack? maybe something we can visually see, maybe not... so, i prefer to try and take care of the problem "antibodys". So, to answer your ?, i believe the antibody numbers predicts the amount of "problems" not just the eyes... In the begining it might be tricky. Most doc will not give you "replacement".. so you might be stuck with just the MMI. in this case, yes, the higher it is the better to treat antibodys.. however, the more tired you will feel in about a month. In this case, your first goal is to get your FT3 and FT4 and TSH all in range (once again, YOur range,not the range the labs give you) you will find out soon enough what your range is....mine is ususally the middle to upper half of range. and im pretty sure thats for a lot of people. <--- mainly speaking of your FT3 and FT4. If those 2 numbers fall below the range, you are going into hyPO.. If this happens then your doc should lower your dosage! So keep an eye out for that.
Your TSH should be moving UP while your hyper FT3 and FT4 should be going down from here... also, PLEASE NOTE::: DOCTORS alot of times will adjust your meds by your TSH,,,that is wrong! Keep this in mind... while on MMI, your 3s and 4s go down, usually quite quickly... sometimes to much so you should lower your meds... But sometimes your TSH dont move up as quickly as your 3s and 4s go down, sometimes it could take months to even a year for TSH to move... so while you may be getting hypo your doc may miss this because your TSH didnt move so they might not back off on the meds... do you understand that or was that all a bit to fast?
when you see your endo, ask him what tests he takes to evaluate your medicine...
ask him if he ever does the "add back" therapy....
when you get your lab results, post on here. we can help you from there.


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