Thyroid Eye Disease

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Hi everyone!

Hello Dee - and welcome to our forum

where I hope you get the help and support you need.

Does anyone know what treatments are pursued by

docs in the UK for TED??

I am sorry you are suffering with thyroid eye

disease. This is an auto-immune condition. The antibodies attack the fatty

tissue behind the eye. Swelling of the damaged tissues can cause the eyes

to become red and for swelling to occur above and below the eyes. It may also

cause the eyes to be pushed forward (‘starey eyes’ known as

proptosis). In more severe cases the damage at the back of the eye causes

swelling and stiffness of the muscles that move the eye, which can cause 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. It is very rare for the vision to be severely affected though even

when it is, prompt surgery or immuno-suppressive treatment can usually improve

the situation.

As far as treatment is concerned, simple eye drops such as 'artificial

tears' will usually give relief. These drops are harmless and can be applied as

often as necessary, even hourly if that helps. For a longer effect 'Lacrilube

Ointment' may be used during the day or night.

I am an ex-pat presently in the USA, I was diagnosed with TED in Dec 07, my

eyes have

(luckily) not swollen too much but back in April 08 I could not move my eyes

properly

because the muscles had swollen to such an extent and my eye doc here put me on

a

tapering down course of Prednisone, but only for 2 months.

This can be difficult to treat. The puffiness is likelyh

to be worse in the morning after lying flat and may be helped by using an extra

pillow or two to raise your head at night, raising the head of the bed on

blocks or using a diuretic at night-time, but you have no doubt realised this

already. The swelling does improve after several months as the eyes

settle. Surgery is sometimes used to improve the appearance in severe cases, if

necessary.

It worked wonderfully, all the swelling was dampened, and I looked near

normal again, but

once I was near the end of the 2 months and of course the dose was less, the

swelling

started to come back, but the muscle movement was much improved.

However the eyes are now a little worse, my eye doc tells me they are protruding

more

each month!

If mild, this problem usually gets better with time as the eyes

settle. When this gets severe and has been present a log time it may not

go away. In such a case, the appearance can often be improved greatly by

surgery to the eyelids which is now becoming more common, once the eyes are

stable and not changing any further.Eyelid surgery is primarily cosmetic in

nature, and designed to bring the eyelids into a more normal position, to

improve appearance. Do you have double vision Dee - surgery for double vision

works with the muscles that control eye movement.

In a very small percentage of patients, the swelling in the

orbital area impairs vision by pressing on the optic nerve. In these cases, a

surgery called orbital decompression is needed in order to prevent

complications.

He is reluctant to prescribe Prednisone again, he worries about the side

effects, I had to

sign a lot of forms before he would prescribe it last time, but he is pushing

radiation

therapy.

I was dx'd with Graves back in Aug 07 and like an idiot allowed myself to be

pushed into

RAI by the Endo here, had I had time to digest and read and research more I

would not

have gone down that road.

For pain, swelling and redness, short courses of the steroid

prednisone are sometimes prescribed, but symptoms often return after the course

of prednisone therapy as you are finding out. Some doctors recommend orbital

radiation, which can be successful in some patients but not all. Radioactive

Iodine treatment is the preferred treatment in the U.S. for Graves'

Disease and its resulting hyperthyroidism. According to the New England Journal of Medicine, however,

radioiodine therapy for Graves' hyperthyroidism is more likely to apparently

cause or worsen Thyroid Eye Disease than is antithyroid drug therapy. This

worsening can be temporary however, and may in some cases be prevented by use

of the steroid prednisone. How long is it Dee since you had this treatment?

Have a look at the information here - I hope it helps you. http://www.thyroid-info.com/articles/thyroideye.htm

I am sure I read somewhere (but can't remember where!) that treatment in the

UK involved

the use of steroids but over a longer period of time?

Does anyone know if this is correct?

Any input would be helpful,

I have only heard of it being used for short

term only in this case.

Luv - Sheila

Thanks

Dee

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