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SERVICES: Thyroid Eye Disease

I just learned that I have a thyroid problem.  Why does my doctor want me to see an eye doctor?

Many patients with a specific type of thyroid problem will also develop changes to the tissues around the eyes.  One in four patients, or more, with an autoimmune thyroid problem will develop these changes.  For many people, the changes around the eyes are minor, but some people may require regular treatment or even surgery.  It is important to look for these changes early.   


What type of changes are common in thyroid eye disease?  What types of symptoms might I notice?  

One of the most common changes you may experience is that your eyes may appear extremely wide open, sometimes described as a “wide-eyed” stare.  In addition to the eyelids being very open, you may find your eyes are also more prominent than normal.  This may make it difficult for you to close your eyes, resulting in a crack of your eyes exposed at night.  Your eyes may feel dry, sandy, gritty and light sensitive.  The mucous membranes that line your eyes can also begin to swell, taking on a jelly-like appearance.  Your eyelids and eyebrows can also become puffy and reddish.  


Just as thyroid eye disease causes swelling of the eyelids and mucous membranes of the eyes, it can also cause swelling within the muscles that move the eyes.  As these muscles swell, they don’t function properly which can result in double vision.  Keep in mind though, double vision has many causes other than thyroid eye disease.  


Other changes can occur in thyroid eye disease, some of which can significantly impact your eyesight.  It’s important for you to talk with Dr. Repp and get a thorough exam to properly diagnose your symptoms.  


When will these changes go away?  


Thyroid eye disease usually has two phases:  an active phase and a stable phase. The active phase lasts on average between six to eighteen months.  This is the period where the swelling of your eyelids and the mucous membranes around your eyes is the most severe.  Eventually the swelling begins to improve.  Once the improvement stops, you have reached the stable phase.  Unfortunately, most people do not improve all the way back to their normal appearance when they reach the stable phase.  You will likely note that swelling and symptoms may remain indefinitely during the stable phase.  


Patients that smoke are at risk of a longer, more severe active phase that may last as long as three years or more.  Up to one in six patients may also undergo a second active phase, which is the exception to the rule.  


Dr. Repp told me that I have “thyroid eye disease,” but my primary care provider wanted Dr. Repp to check for “Grave’s ophthalmopathy.”  What’s the difference?  


Thyroid eye disease goes by a number of different names that all refer to the same condition. In addition to “Grave’s ophthalmopathy,” you may encounter other terms, such as “thyroid orbitopathy,” “dysthyroid ophthalmopathy” and “thyrotoxic exophthalmos.”  Other providers may use additional terms, as well.  


Dr. Repp diagnosed me with “thyroid eye disease.”  My thyroid testing was normal – how is this possible?


Thyroid eye disease is an active area of research, holding several puzzles that have yet to be solved.  Slightly more than one in twenty patients with the common findings of thyroid eye disease have normal thyroid tests.  


I just learned I have thyroid eye disease.  Is there anything I can do to help?


It is critical to stop smoking if you smoke.  Smoking is a risk factor for more severe disease and for a prolonged active phase of the disease.  


What are some of the treatments for thyroid eye disease?  Does everyone need surgery?


Dr. Repp will individualize a treatment plan for you after talking with you and examining you.  Some patients with thyroid eye disease will find they only need simple, over-the-counter remedies, particularly if dryness of the eyes is the main symptom.  These remedies may include artificial tears and ointments.  Eye glasses that shield the eyes from air flow may also improve symptoms.  Sleeping with the head of the bed elevated may help swelling. Other patients will need medications or surgery.  Fortunately, only about one in five patients with thyroid eye disease will need surgery.  


If I do need surgery, what types of surgeries are common?


There are three categories of surgery that are helpful to treat thyroid eye disease.  The first category of surgery is surgery to expand the eye socket, also known as the “orbit.”  This surgery is called orbital decompression.  The second category of surgery helps realign the eyes in patients that have double vision from thyroid eye disease.  This type of surgery is typically performed by a specialized eye surgeon known as a “strabismus surgeon.”  The final category of surgery is eyelid surgery to help restore the position of the eyelids and, in some cases, improve the puffiness of the eyelids.  Dr. Repp can talk with you to determine if you are a candidate for any of these procedures.  


I heard that I might need to have my surgeries in a certain order, why is that?


It is important that eye socket surgery (orbital decompression) come before surgery to align the eyes, which in turn needs to come before surgery on the eyelids.  Orbital decompression can alter the alignment of the eyes.  If you have surgery to align the eyes, orbital decompression could cause your eyes to go out of alignment again.  This means your eyes may need to be realigned, effectively an unnecessary surgery.  Similarly, orbital decompression and surgery to align the eyes can change the position of the eyelids.  It’s important to fine tune the position of the eyelids, if needed, after you have had any surgery that could change your eyelid position.  


Not all patients will need each category of surgery; for example, some patients may only have eyelid surgery.  Others may have orbital decompression and eyelid surgery only.  The order is still important.  


Can you tell me a little a bit about orbital decompression surgery?


Orbital decompression is an eye socket surgery that Dr. Repp will discuss with you if your eyes are especially prominent.  If your eyes are prominent from thyroid eye disease, they can be hard to close, leading to dryness, irritation and light sensitivity.  Generally, the goal of orbital decompression surgery is to enlarge the eye socket to give the eye room to settle back into the socket.  Rarely, orbital decompression surgery is performed if there is so much swelling in the eye socket that the nerve that connects the eye to the brain is threatened.  

Orbital decompression is often a day surgery, meaning you can have surgery and go home the same day to recover.  Some patients will need to spend the first night in the hospital.  Dr. Repp can help you decide which option is best for you.  Orbital decompression is often done with you fully asleep under general anesthesia, although there are exceptions.  During surgery, an anesthesiologist will monitor you to keep you comfortable.  Once your comfort is assured, Dr. Repp will perform the orbital decompression surgery on the walls of the eye socket.  


The eye socket has four walls, and each of these can be expanded during orbital decompression surgery.  Generally, the more prominent your eyes, the more walls Dr. Repp will need to treat during decompression surgery.  Dr. Repp will remove parts of the bony wall of the eye socket and relax the lining of the socket to allow the eye to settle back into the socket.  


What about recovery and aftercare?


Each patient is unique, but patients generally find they recover smoothly following surgery.  Dr. Repp will customize an after-care plan for you, but some general guidelines follow.  Ask Dr. Repp if these apply to you before following any of the recommendations on this site.  And if something does not seem right, do not hesitate to call Dr. Repp.


Most patients will use frequent cool compresses for the first two days after surgery.  During this time, Dr. Repp will likely ask you to limit activity, commonly recommending that you avoid any heavy lifting or bending.  These activities can stress your surgery site and set your healing back.  Following surgery, most patients experience a level of discomfort that can often be effectively treated at home with medications recommended by Dr. Repp.  If you experience more than mild pain or discomfort, you should call Dr. Repp immediately for recommendations.  You will also need regular ointment on your incision line.  The ointment acts as a salve, soothing the eyelids as you heal.  Many patients wonder when they can safely return to work or other normal activities.  There is no single answer for every patient, so ask Dr. Repp for details.  The same is true for when patients can return to wearing their contact lenses, although many patients can begin wearing their soft contact lenses by two weeks and their hard lenses by one month.  Check with Dr. Repp to see if these guidelines apply to you.  Lastly, Dr. Repp will place sutures during your surgery.  Typically, these are removed between one-to-two weeks following surgery.  Ask Dr. Repp for details.  

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