what is the chance of eye problems with graves

[grizz78]

I was recently diagnosed with graves. My eyes have been really bothering me, sore and sensitive.Do these symptoms go away after you start the meds? I just saw some pictures of those with eye problems and it scares me. What is the chances that it actually happens. I have just started the meds. I didn't ask when I was at the endo but is there a chance that you get to stop taking them at some point or is it forever. I choose the low dose meds since I have a young child and would like to have another within the near future. I was told atleast not for another 6 or more months by the endo. With hyper you are suppose to have lots of energy right. I am the complete opposite and get tired very fast. Is anyone else like that with the graves hyperthyroid?

[ChitChatNine]

WELCOME TO THE COMMUNITY!

I don't have much experience to help you but wanted to say hello!

Cheryl

[cbread]

I have graves and TED.  The medication cleared up my hyper symptoms but my eyes got worse for a little while even though I felt better. I have been euthyroid for awhile (maybe 8 months) and my eyes are much better now. Unfortunately while related, the diseases follow their own path. Most of us take flaxseed oil which helps the eye lubricate itself so I would try that and be patient. It all gets better...but it takes some time. While hyper I was low energy but angry and jittery. I felt reved up and tired. Just standing myademy legs feel like I had just finished a marathon.  And asking a hyperthyroid person to be patient...well you know the end of that joke...  good luck!

[tm514]

The number I have seen is that less than 5% of those with Graves/hyperthyroid develop the eye disease associated with the thyroid disease.  The eye disease is actually caused by different antibodies than those that cause the thyroid disease.  Sometimes people have the eye problems and never have thyroid problems.

Treatment of hyperthyroidism does not treat Graves Eye Disease.  The symptoms of GED are frequent tearing (I developed eye problems months before I developed thyroid problems, I thought it was allergies), gritty feeling in the eyes.  As the eye disease progresses, the eyes can bulge out of the sockets, lid lag and retraction can develop and double vision can develop.  

As far as anit-thyroid meds go, most docs will treat with them for 12-18 months before recommending RAI or surgery.  Sometimes (rarely) a patient on meds will go into remission for a period of time.  There can be side effects to the drugs that often make docs not want to keep patients on them long term (liver problems and problems with white blood cell counts).

As far as your energy level goes, look at it this way.  Your body's metabolism is faster than it should be.  I heard it compared to running all the time once - if you were running all the time, wouldn't you be exhausted?  Additionally, you may not be sleeping well at night which could contribute to your tiredness as well.

Good luck to you, I have been where you are.  It is a long road and patience and a good doctor are necessary to make it through to the other side.