Eyes and Graves

[lm830simmons]

I'm having RAI next Friday for Graves. My eyelids are puffy and my eyes are occasionally dry. I don't think they're bulging, but the endo and my husband think they are. I don't have any other eye problems like double vision or trouble closing my eyes. Should I expect the eye-thing to get better, worse, or the same after RAI? Should I see my opthomologist? Thanks for any advice:) .

[GD Women]

I know of some who say that their eyes got better after RAI. I didn't have any signs until two years after RAI which tells me that I carry the thyroid eye antibodies. However, my eye hasn't gotten any worse nor has it improved any. My eye seem to bother me more when I am on the hyper side of range and less when on the hypo side. I have read where others say the same.

See an opthalmologist soon as possible. It's possible that you will be a "wait and see" patient -- that's very common. But it's good for an opthalmologist to have baseline readings for your eye measurements so they have some way to quantify the changes. Then you'll have an established relationship and the doctor will know where your eyes started.

The worsening after RAI can be temporary and may in some cases be prevented by use of the steroid prednisone.
What is known about any association of RAI and TED is that RAI has been shown, in at least one study, to aggravate the symptoms of TED, temporarily, in approximately 16% of patients, mostly smokers (I was a smoker). It has not been shown to "cause" the eye disease, nor has it been shown to permanently worsen it. But if you have any significant symptoms of the eye disease, you need to talk with your doctor. It has also been shown that RAI with a concurrent course of steroids (prednisone) protects against the temporary worsening: no patients who had the concurrent steroid treatment had any worsening of their eye symptoms in the study.

For dry eye use Lubricating sterile eye drops with natural ingredients /no perservatives (expecially if you have TED), not something that gets the red out those can be more drying to the eyes. You can also use frozen peas in a ziploc bag to help the pain behind your eyes. Make sure to mark the bag so you don't try to cook them later. :-) Peas work well because they do the best job of conforming to the valleys around the eyes and they give the most complete relief. The sunglasses they sell for cataract patients are great for keeping light out.


Puffy eyes, raise the head of your bed with a 4x4 under the head of the frame, and it raises the bed just right. That helps gravity to keep the fluid from collecting in the tissues of your eyes. If you have continuing difficulty, you can look into the nighttime gel products that stay in the eye overnight to provide extra moisture.

The only way to minimize any risk is to keep our stress levels down. TED is another autoimmune disease so the same rules apply as with the thyroid symptoms. Keep stress down and the symptoms will be less severe. However keeping stress levels down does not guarantee that we will not end up with severe TED.

Good Luck!

[kisvis]

Is there anyone out there that gained weight with graves, then had RAI and lost it? I am desperately hanging on to the fact that weight gain is temporary. A few years back I lost 50lbs. I did gain 10 of it back because people said i looked terrible that thin. I had lost the weight so i could stop smoking. gained 8 pounds while quitting, good news is I am a non-smoker since october 07. however, that is when it all hit the fan, i started feeling awful, being diagnosed quite a few years back with fibromyalgia and having a pernicious anemia i figured that's what it was. I did go in feb of 08 to complain to doc, she tested thyroid, ordered colonoscopy, checked vitamin d, and said to go to gynecologist. The colonoscopy was negative, was low in vitamin d, thyroid was normal. haven't seen gynecologist yet. got diagnosed in may with graves at my physical in april thyroid blood work came back low, so tested for t3 and t4 and had ultrasound to find goiter. endo here could see me for 8 months, and pulse rate too high so was sent to beth israel in boston to see endo. had test definitely graves, allergic to tapazole, so now on ptu (which i hate) taste awful, itching. had to start exercising weight is coming back on a pound a day. i see doc this coming tuesday for some blood work results. I am 20 pounds away from the 50 i had lost and do not want to go there again. i kept it off for 2 years before this all happened. I am depressed. tired, heart rate sooo much better so that is why i started exercise. hopefully she won't tell me to stop. however, exercise is not doing anything for the weight issue, just for the mental aspect of things.

I am hoping someone out there has lost weight after RAI, cause if I am going to start gaining with the ptu i want off of it, HELP

[mkseff]

I'm having RAI next Friday for Graves. My eyelids are puffy and my eyes are occasionally dry. I don't think they're bulging, but the endo and my husband think they are. I don't have any other eye problems like double vision or trouble closing my eyes. Should I expect the eye-thing to get better, worse, or the same after RAI? Should I see my opthomologist? Thanks for any advice:) .

hi. when graves hit my eyes, I was afraid of rai. I already had puffy eyes & double vision in the morning. the procedure did not make thing worse. in fact, the double vision is gone & the swelling is way down. I might have to have an eyelid lift, though, cause the puffiness left me with lots of extra skin. -- marsha

[Andros]

I'm having RAI next Friday for Graves. My eyelids are puffy and my eyes are occasionally dry. I don't think they're bulging, but the endo and my husband think they are. I don't have any other eye problems like double vision or trouble closing my eyes. Should I expect the eye-thing to get better, worse, or the same after RAI? Should I see my opthomologist? Thanks for any advice:) .

No matter what the outcome, it would be best to see an ophthalmologist. No two situations are ever the same. Some say nothing happens to the eyes, some say it does with RAI. The same can be said of surgery. I think percentage wise, it is more likely for the eyes to worsen w/ RAI BUT..............they could put you on Prednisone prior and during and after for a certain period. I understand that helps to stave off worsening of your eyes.

Good luck and let us know how you do!

[mkseff]

my eyes were puffy -- not bulging -- & I had double vision for an hour each morning. I was afraid of the rai making things worse. but it didn't. in fact, despite my eye doctor warning me things would get worse for a year before they got better, they got much better. hope you have the same experience.

[Nova]

my eyes were puffy -- not bulging -- & I had double vision for an hour each morning. I was afraid of the rai making things worse. but it didn't. in fact, despite my eye doctor warning me things would get worse for a year before they got better, they got much better. hope you have the same experience.

I have Grave's, had RAI about 5 yrs ago, did not have TED that I knew of at the time of RAI. This fall I finally went hypothyroid and TED symptoms started. Dry scratchy feeling eyes, sensitivity to light, a slight swelling/pressure feeling, worsened vision/blurry in particular, and right eyelid appears to droop a little more than the left. I also believe I must have had the antibodies all along but the symptoms were so minor I attributed them to other things or did not notice. I have an optomologist appt scheduled. I'm still hopeful that maybe all the lessons I learned about advocating for myself through the Grave's experience (sounds like an album cover of some kind ;)) will help.

Someone had also posted asking about weight gain with Grave's...that's what I had prior to being diagnosed and still even after RAI cannot seem to get the weight off. That is also a symptom that boggled my drs for years - how can you be producing too much thyroid hormone and still gain weight? Also, I was cold sensitive rather than heat sensitive and for a period of time my thyroid tests were coming back as within normal limits - only when I presented as thyrotoxic with heart damage and many miscarriages did they finally listen and help. Currently, my fertility specialist suspects something called estrogen dominance (so hooray for another hormone gone crazy!) and will recommend some options for that at an upcoming appt. So, that just reminds me, that we are complex beings and as much as Grave's can be the cause and the symptom of so many things - so many other things can also be going on! There is also some evidence now linking too much estrogen and estrogen mimicking chemicals in the body as one possible (among many - stress, pesticides and/or genetics for example) catalyst for Grave's...let's hope they find answers and a cure as soon as possible. Until then, I'm going to stay positive, advocate and educate and share with others what I can.

[Andros]

I have Grave's, had RAI about 5 yrs ago, did not have TED that I knew of at the time of RAI. This fall I finally went hypothyroid and TED symptoms started. Dry scratchy feeling eyes, sensitivity to light, a slight swelling/pressure feeling, worsened vision/blurry in particular, and right eyelid appears to droop a little more than the left. I also believe I must have had the antibodies all along but the symptoms were so minor I attributed them to other things or did not notice. I have an optomologist appt scheduled. I'm still hopeful that maybe all the lessons I learned about advocating for myself through the Grave's experience (sounds like an album cover of some kind ;)) will help.

Someone had also posted asking about weight gain with Grave's...that's what I had prior to being diagnosed and still even after RAI cannot seem to get the weight off. That is also a symptom that boggled my drs for years - how can you be producing too much thyroid hormone and still gain weight? Also, I was cold sensitive rather than heat sensitive and for a period of time my thyroid tests were coming back as within normal limits - only when I presented as thyrotoxic with heart damage and many miscarriages did they finally listen and help. Currently, my fertility specialist suspects something called estrogen dominance (so hooray for another hormone gone crazy!) and will recommend some options for that at an upcoming appt. So, that just reminds me, that we are complex beings and as much as Grave's can be the cause and the symptom of so many things - so many other things can also be going on! There is also some evidence now linking too much estrogen and estrogen mimicking chemicals in the body as one possible (among many - stress, pesticides and/or genetics for example) catalyst for Grave's...let's hope they find answers and a cure as soon as possible. Until then, I'm going to stay positive, advocate and educate and share with others what I can.

Hi there Nova!! Please let us know about your eyes. It never ends, it would seem. I am sorry and I hope and pray medical intervention is successful. It should be. Much can be done to stave this off.

As to the weight. It won't come off until the patient is euthyroid meaning that labs are in normal range for that individual person. For me, it was getting the TSH suppressed w/ the Frees being in mid-range or a bit higher. I was not able to accomplish that on T4 alone as I was not converting T4 to T3.

Have you had Free T4 and Free T3 run? If so, may I see the results and the ranges along w/ TSH? Maybe I can help?