What will happen at my first thyroid eye disease clinic appointment?

Thyroid eye disease (TED) patients are often very concerned about what to expect at their first appointment with an ophthalmologist, this is what typically will happen.

Receiving your first TED clinic appointment maybe an emotional experience bringing a range of feelings such as fear, apprehension, hope and even relief, especially if you have experienced a long waiting time. You may well be tearful.

You may see a number of clinical staff and have a variety of tests and examinations in a single clinic. This is why appointments can take up to a few hours in some cases.

Use of a slit-lamp in a TED clinic

First steps

On arrival, after booking in at the reception desk or kiosk, you will usually first see a nurse or eye technician before seeing the ophthalmologist. You will have some simple and non-invasive vision tests done to find out if TED is affecting your vision or not.

This usually starts with reading an eye chart, with each eye in turn.

You might also be asked to do some colour vision tests. This is simply means looking at Ishihara images in a book. Colour vision is typically the first aspect of vision to be affected if TED is starting to affect your optic nerve.  They may also ask some general health questions such as which medications you are taking and whether you have any allergies. There might be an eye pressure check with a hand-held device. In the past, you may have had an eye pressure test using a puff of air. Now most ophthalmologists use a more accurate device that gently measures pressure by direct contact with the eye.

Use of Ishihara images to check for colour vision.

Seeing the ophthalmologist

Each TED clinic typically has several doctors working in it. These may be one or more consultants (senior specialists), their team of registrars, fellows (doctors doing specialist training) and staff specialist doctors. Sometimes they may have other learners sitting in to observe the clinic such as medical students or optometrists. It is not compulsory to allow students to observe your clinic should it make you feel uncomfortable as a patient. If you feel comfortable to have them observe, please do make them feel welcome. The more our future doctors learn about TED the better!

When you see the consultant opthalmologist, they should introduce themselves and start by taking a ‘history’, i.e., asking you about your symptoms and the story of your eyes and thyroid condition so far. They will also need to know about your general health and any other medical condition. This will help them plan the most appropriate treatment for you.

Examining your eyes

Your eyes will be examined through a number of steps.

Usually, they will look at your pupil reactions, which is another way of seeing if the optic nerve is functioning well. Eye movements will also be checked including how swollen your lids and tissues around the eyes are and measurements of your eyelids may be taken.

An instrument called an exophthalmometer is used to measure how much your eyes protrude (‘proptosis’).

Use of an exophthalmometer to measure proptosis

The ophthalmologist will examine the front of your eyes using a slit lamp which is an instrument that functions like a microscope to magnify the eye. This may involve putting some orange dye drops (fluorescein) in the eye to highlight any dry patches.

If your eye pressure hasn’t already been checked by the nurse, the ophthalmologist may do this now with a tonometer that uses a blue light probe to measure the pressure. You will be given some numbing drops in your eye first to make sure this isn’t uncomfortable. They will look at the back of your eye (the ‘fundus’, including the optic disc and retina) using a special lens which may require dilating drops to be instilled into your eyes to widen the pupils for a good view.

The drops usually take up to 15 minutes to work. There are a few more tests and investigations that might be done, depending on what the doctor finds in the initial assessment.

If you have double vision or there is a problem with your eye movements, you might see an orthoptist. Orthoptists are specialised health professionals who can assess eye movements in detail. This is helpful for planning treatment, measuring whether things are improving or getting worse at subsequent appointments, potentially planning squint surgery if needed.

If you don’t have up-to-date thyroid function test results or if other medical treatment is planned, the doctor may ask you to have some blood tests. They may also check your blood pressure, weight and blood sugar especially if steroid treatment may be needed.

If there is any suspicion that your optic nerve (the nerve transmitting visual information from the eye to the brain) is becoming affected, they may request a visual field test to check your peripheral vision. In this test, you usually have to look into a bowl-shaped apparatus and press a button when you see small lights appear in around your field of vision. Each eye is usually tested separately. It can take about 15 minutes to do a full test.

Often the doctors will request for you to have clinical photos taken – this helps to compare your progress from visit to visit and forms part of the medical record.

Final steps

Once all the examinations and tests are complete, the doctor will see you again and discuss their findings with you before making any recommendations for treatment.

If treatment with steroids or immunosuppressive drugs is planned, you may need to see an immunosuppression nurse specialist or another doctor who specialises in these drugs, depending on the way the particular clinic is set up.

Sometimes no specific treatment is needed but you may be given a future appointment for monitoring your eyes. If surgery is recommended, they will discuss the risks and benefits of the procedure and help you to decide whether you want to go ahead.

The ‘Gold Standard’ TED clinic

Some ophthalmology clinics are set up jointly with endocrinologists. TEDct considers this to be the ‘Gold Standard’ way to run a specialist TED clinic. This means that you see your endocrinologist on the same day. This may not  be needed every time. In some clinics the endocrinologist has a separate list of patients but is on hand to advise the ophthalmologist if needed. Your ophthalmologist should let you know at the end of the consultation how soon you should have another appointment. The specialist will write a letter to your GP and any other doctors involved in your care, such as your endocrinologist, at the end of the consultation. You can ask for a copy of that letter to be sent to you for your own information. This is sent automatically in some hospitals but not all. It may be worth asking about this if you think it would be helpful to you.

How long does the ophthalmology appointment last?

Considering the wide range of eye tests, clinic appointments can take some time. Hospitals usually advise to allow a couple of hours for all the tests to be done. Follow-up visits typically take a bit less time, depending on how you are doing and what treatment you need.

Preparing for an ophthalmology appointment to assess TED

  • Remember to bring your glasses if you have any! The doctors want to know whether TED is affecting your sight. This can be difficult to tell without your glasses.
  • Bring an up-to-date list of any medications and drops you are taking.
  • Don’t drive to your appointment in case you need dilating drops as these can blur your vision for a couple of hours, making driving unsafe. If you are having difficulty finding transport to the appointment, call the contact number on your appointment letter. Transport can be provided in certain circumstances.
  • If you have particular questions you want to ask the healthcare team, consider writing them down to take with you. It’s easy to forget something once you’re in the clinic, especially if you tend to feel anxious in the hospital.
  • Try to take someone with you as support.
  • You may be able to record your appointment but please make sure to ask the consultant first.

TEDct hopes this helps you to prepare for your appointment. The staff members in the clinic are there to help you, so don’t be afraid to ask questions if you don’t understand something or don’t feel comfortable with a recommended treatment.

If you want to hear from other TED warriors who are going through similar experiences, our Facebook forum Thyroid Eye Disease Support UK now has more than 800 members.

Article written by Rebecca Ford, consultant oculoplastic surgeon at the Bristol Eye Hospital for and on behalf of TEDct.