Overview: What is endocrine orbitopathy?
In people with endocrine orbitopathy, the eyes are diseased. The tissue of the eye sockets, the eye muscles and the eyelids are usually affected. Endocrine orbitopathy can often be recognized visually: Typically, the eyes bulge forward due to an increase in fat, muscle and connective tissue in the eye socket. The eyes protrude forward due to the inflammation and swelling. The disease has other names: endocrine exophthalmos or endocrine ophthalmopathy.
The eye disease is usually associated with Graves’ disease – a thyroid disorder that is an autoimmune disease. Those affected usually have hyperthyroidism. In an autoimmune disease, the immune system attacks the body’s own tissue – in this case the tissue of the eye sockets. The disease usually affects both eyes, although the extent can vary.
Doctors have various options for treating endocrine orbitopathy – from anti-inflammatory medication to surgery. Which treatment doctors choose always depends on the severity of the disease. You can also do a lot yourself to improve the condition and slow down its progression.
Endocrine orbitopathy – frequency and age
Endocrine orbitopathy usually occurs in people with Graves’ disease – the eyes are involved in just over half of sufferers. Graves’ disease is an autoimmune disease that affects around two to three percent of the population in industrialized countries. For Switzerland, this means Around 225,000 people suffer from Graves’ disease.
In most cases, the eye changes are only mild and hardly noticeable. In some patients, however, endocrine orbitopathy can take on considerable proportions and disfigure the face. Severe endocrine ophthalmopathy affects around five to 25 percent of all patients with Graves’ disease. Women fall ill much more frequently than men – endocrine orbitopathy affects them around three times as often.
Usually both eyes bulge forward, but not always to the same extent. Only about one percent of those affected develop the eye change on one side only.
Endocrine orbitopathy: usually caused by Graves' disease
Endocrine orbitopathy usually develops in connection with Graves’ disease – a thyroid disorder that is an autoimmune disease. The misdirected immune system mistakenly attacks the body’s own tissue – in this case the thyroid tissue, but also the tissue of the eyes.
The immune system forms antibodies against the so-called TSH receptors. These are special proteins that occur on the thyroid cells. The docking of the antibodies to these receptors triggers an inflammatory reaction in the thyroid gland. The problem is that these docking sites for the antibodies are also located in the muscle and fatty tissue of the eye socket. Inflammatory processes can therefore also occur there, which in turn are associated with swelling of the eye socket – causing the eyes to visually bulge forward.
Endocrine orbitopathy can precede thyroid disease, occur simultaneously with it or develop with a time delay. It is very rare for eye disease to occur without doctors being able to diagnose thyroid disease.
Symptoms: Endocrine orbitopathy causes eye problems
In endocrine orbitopathy, the tissue in the eye socket around the eyeball changes. The fat, muscle and connective tissue increases, becomes inflamed and swells. A typical symptom is that the eyeball bulges forward or protrudes from the eye socket(exophthalmos). This often happens on both sides. However, the extent can vary. In any case, the appearance of those affected is altered, which can seriously affect their quality of life. The eyes are also more difficult to close, which can also be a great hindrance.
All symptoms of endocrine orbitopathy at a glance:
- watery eyes
- Dry, irritated, burning eyes
- reddened, inflamed eyes
- Swollen and raised eyelids
- Reduced blinking
- Foreign body sensation in the eye – some describe a feeling as if they have sand in their eye
- Pain and pressure behind the eyes
- Pain when moving the eyes
- Increased sensitivity to light
- protruding eyes (exophthalmos)
- Lack of eyelid closure
- Fixed gaze when the function of the eye muscles is impaired
- Visual disorders, e.g. double vision, blurred vision, color vision disorders
- Conjunctivitis and corneal inflammation, corneal ulcers
- Headache
- Rare: reduced vision if the optic nerve is damaged
However, most patients only develop a mild form of endocrine orbitopathy and the symptoms are not severe. However, in five to 25 percent of all patients with Graves’ disease, the eye disease is more severe.
Endocrine orbitopathy: diagnosis with us
The diagnosis of endocrine orbitopathy always begins with a discussion between a doctor and a patient about their medical history (anamnesis). The doctor will ask you about the type, duration, intensity and course of the symptoms. Existing underlying diseases are also important – in this case Graves’ disease. This is because endocrine orbitopathy usually occurs in Graves’ disease patients. If this autoimmune disease has already been diagnosed, an eye examination usually follows. This allows the extent of the eye change to be determined.
If Graves’ disease is not known, doctors first examine the eyes and thyroid gland. A blood test provides further information. Doctors determine the thyroid values. These include the thyroid-stimulating hormone TSH and the thyroid hormones T3 and T4. The detection of two thyroid antibodies called TRAK and TPO-AK is also informative.
Imaging procedures such as ultrasound (sonography), computer tomography (CT) and magnetic resonance imaging (MRI = magnetic resonance imaging) can also be helpful in the diagnosis.
Endocrine orbitopathy: prevention, early detection, prognosis
Endocrine orbitopathy usually occurs in connection with Graves’ disease. And you cannot prevent this autoimmune disease. There are also no special early detection measures in the doctor’s office. The general advice is therefore to have your eyes checked regularly by an ophthalmologist if you have Graves’ disease. A visit to the doctor is also always advisable if you notice changes in your eyes or have vision problems.
Course and prognosis of endocrine orbitopathy
The course and prognosis of endocrine orbitopathy cannot be generally predicted. They can vary greatly from person to person. Some people experience a very mild course, while others have more severe eye disease. Doctors suspect that smoking has an unfavorable effect on the course of the disease. Radioiodine therapy can also have a negative effect on the course of the disease. With timely treatment, however, the prognosis is usually favorable.
Doctors have identified two phases in the course of endocrine orbitopathy:
- Inflammatory phase: It lasts about 1.5 to two years. During this time, the eye findings can change very quickly. Doctors mainly use medication or local eye therapies. Regular eye checks are particularly important during this phase.
- Quiet phase: The eyes change only slightly or not at all. In this case, surgery may be an option.
Endocrine orbitopathy: treatment depends on severity
There are various ways to treat endocrine orbitopathy. The therapy is primarily aimed at normalizing the thyroid values in Graves’ disease. Drugs that inhibit thyroid function, known as thyreostatics, are usually used. They either slow down the build-up or release of thyroid hormones.