Thyroid
Eye Disease
Adapted leaflet of TED self help
group
What is thyroid eye
disease?
Thyroid eye disease is
an ‘autoimmune’ condition. ‘Autoimmune’ means that your own white blood cells
or antibodies are causing damage to parts of your own body in addition to their
normal role of protecting you against infections. In the case of thyroid eye
disease the damage is directed to fatty tissue behind the eye. Swelling of the
damaged tissues behind the eyes can cause the eyes to become red and swelling to
occur above and below the eyes. It may also cause the eyes to be pushed forward
(‘starey eyes’, ‘proptosis’). In more severe cases the damage at the back of
the eye causes swelling and stiffness of the muscles that move the eye causing
double vision especially when you look from side to side as the muscles cannot
keep the eyes exactly in line with each other. Occasionally the swelling behind
the eyes is bad enough to press on the nerve from the eyes to the brain
affecting your vision.
Does is have any other
names?
Doctors call this
condition many different names including ‘thyroid ophthalmopathy’, thyroid
associated ophthalmopathy’, ‘Graves’ eye disease’ and ‘Graves’ ophthalmopathy’.
What causes it?
The cause still remains
unknown, however we do know that thyroid eye disease as its name suggests is
closely connected with autoimmune thyroid disease and that is more likely to
happen in smokers. It has only a slight tendency to run in families.
Are there any other
symptoms?
The commonest symptoms
are mild soreness and grittiness of the eyes. Surprisingly one eye is usually
affected more than the other. There may also be increased watering of the eyes,
a dislike of bright lights and a feeling of discomfort behind the eyes
especially when looking up or side-to-side. Puffiness of the upper eyelid or
around the eyes (‘baggy eyes’) is also common and is worst first thing in the
morning. The eyes often appear ‘starey’ and drying of the eyes or too much
tears can cause blurry vision which comes and goes. You should consult a
specialist urgently if your vision is getting worse all the time rather than
just on and off.
What is the connection
with thyroid disease?
In addition to the
antibody or white cells that cause the eye problem, 90% of people with thyroid
eye disease also have an antibody in their blood which causes an overactive
thyroid gland. The overactive thyroid gland is called Graves’ Disease, after Dr
Graves who first recognised it 200 years ago. Note that the eyes and thyroid
are not always affected at the same time. For example the thyroid overactivity
can come first and then the eye disease can develop even after the thyroid has
been treated. Also treatment of one does not treat the other. A small number
of people who develop thyroid eye disease have no thyroid disturbance and some
have an underactive thyroid.
Will the treatment for
the thyroid make the eyes better or worse?
In general no.
Treatment of the thyroid over activity with tablets or surgery rarely affects
the eye. However studies have suggested that radioactive iodine treatment for
the thyroid may make the eye problems worse. If you have no eye problems then
radioiodine is an excellent treatment. Treatment for the thyroid may also
affect the eyes in one other way. If the thyroid is over treated and your
thyroid becomes underactive (hypothyroid) this can worsen any eye problems.
Can thyroid eye disease
be prevented?
To some extent. Giving
up smoking and careful checks of thyroid blood level to avoid under activity may
help prevent the eye problems getting worse although they are not the full
answer.
Will my eyes get worse?
In most people, thyroid
eye disease only causes irritation of the eyes, a little stareyness and some
puffiness around the eyes. This carries on usually for a few months,
occasionally one to two years and then settles down by itself. In about 1 in 10
people the eyes get worse. This usually happens within a few months of the
problem starting so that if your eyes have been the same for more than six
months it is unusual for them to get worse.
What are the main
symptoms of thyroid eye disease and what can be done about them?
·
Irritation
and redness of the eyes
Simple eye drops such
as ‘Artificial Tears’ (Carbomers and Hypromellose Eye Drops) will usually give
relief. These drops are harmless and can be applied as often as required even
as much as hourly. For longer effect Simple Eye Ointment or Lacrilube Ointment
may be used during the day or night.
·
Puffiness
around the eyes
This is more difficult
to treat. The puffiness is unsightly but not dangerous. It is worse in the
morning after lying flat and may be helped by using an extra one or two pillows
or bolster to raise your head at night, raising the head end of the bed on
blocks or using a diuretic (water tablet) at night time. Usually the swelling
does improve after several months as the eyes settle. Surgery is sometimes used
to improve the appearance in severe cases.
·
Prominent or
starey eyes
If mild, this problem
usually gets better with time as the eyes settle. When it is severe and has
been present a long time then it may not go away. In this case the appearance
can often be very much improved by surgery to the eyelids, once the eyes are
stable and not changing any further. Some people find tinted spectacles helpful
to disguise the appearance.
·
Double vision
If this only occurs
from time to time and/or only when you look out of the corner of your eyes then
it should not interfere with normal activities and does not require treatment.
However if the double vision occurs more frequently you need specialist help.
Plastic prism lenses added to glasses can improve the double vision. At a later
stage, if the double vision remains, surgery as for squints in children can be
done to realign the eyes. However if the double vision is getting worse you may
need ‘immunosuppressive treatment’ (see below).
·
Deteriorating
vision
If this happens more
than just occasionally and cannot be corrected by new spectacles, urgent expert
attention is required as it may mean that there is pressure on the nerve behind
the eyes. Immunosuppressive treatment (see below) or surgery to relieve
pressure behind the eyes as soon as possible may be necessary. Sometimes the
problems with vision are caused by drying out of the eyes if they are very
prominent and the eyelids do not close fully at night. Surgery may then be
required to protect the eye.
What is
immunosuppressive treatment (steroid tablets, radiotherapy)?
When double vision is
getting worse or the accuracy of vision is deteriorating, stronger treatment may
be used to calm down the immune system (immunosuppressive treatment) and reduce
the swelling behind the eyes. Some specialists use low dose radiotherapy to the
eyes. This is often effective and side effects (in experienced hands) are
minimal. Currently standard ‘immunosuppressive treatment’ involves steroid
tablets at high dosage. This treatment is effective but can cause swelling of
the face, increase in weight, thinning of the bones, sleeplessness and
diabetes. It is therefore reserved for severe cases and must only be used under
specialist supervision. Once the thyroid eye disease reaches the stable
uninflamed state these treatments are not effective.
Will the eyes go back
to normal?
Occasionally, yes,
especially if they were only mildly affected. However this may take up to 12-24
months. The longer the eye changes have been present the less likely it is that
they will go away. This is because the swelling turns to scarring and even
immunosuppressive treatment will not reduce the scarring. Expert treatment is
then required usually involving carefully planned surgery and can be very
effective in improving the appearance of the eyes.
Should I see an eye
specialist (ophthalmologist)?
Yes. If you have more
than minor symptoms this is advisable. The eye specialist will want to see your
eyes as soon as possible in case anything can be done to prevent later
problems.
Am I likely to lose my
sight?
No. It is very rare
for the vision to be severe affected. Even when it is, prompt surgery or
immunosuppressive treatment can usually improve the situation.
The changes in my face
have affected me badly. Can anything be done about them?
Some of the effects of
thyroid eye disease improve with strict medical control and the passage of
time. However in a proportion of sufferers the changes persist long term. Many
can camouflage these by simple measures such as growing a fringe or wearing
tinted or dark glasses, but some experience considerable psychological
difficulties as a result of changes in their appearance. This can result in
loss of self-esteem, lack of self-confidence and anger at the changes.
Relationships are also affected at many different levels. All this is hardly
surprising as the face and particularly the eyes are the most significant point
of contact between individuals. More research is needed into the psychological
effects of changes in people’s appearance in thyroid eye disease and also on the
treatments aimed at rehabilitation. Certainly an increasing number of
specialists are aware of these problems and are prepared to tackle them if there
is significant disfigurement and once the disease has reached the stable
uninflamed stage. The surgical plan will be tailored to meet the individual’s
needs but it is fair to say that the surgery is not easy and often more than one
operation is needed.
Can I make contact with
fellow sufferers?
Yes. Many people find
the changes in appearance with thyroid eye disease very distressing and contact
with other sufferers who have been through the same thing is very helpful. You
can make contact with other people through the Thyroid Eye Disease (TED)
self-help group.
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