About Thyroid Eye Disease

When the problems with my right eye started, back in November last year, I thought they were related to a fall that I’d had a few days before, where I’d tripped over something stupid and fallen forward and banged my head.  As I was brushing my hair one morning I tipped my head down, everything in my field of vision separated and I had double vision.  It was a weird experience, watching two images diverge but it wasn’t particularly troublesome, just a little irritating.  I had thought that the bump on the head may be responsible but as I’d had no obvious headaches or other side effects after the fall, I adopted my usual pragmatic stance and decided it would settle.

I woke up about a week later and my eye felt a bit puffy, at which time I decided it was time to visit the optician.  I was then referred to the hospital and in the fullness of time I presented myself to the optometrist.  Diagnosis of the problem was slow and my initial appointments seemed to be more about correcting the double vision with prisms attached to my glasses, rather than finding out what was causing it.  In February the strength of the prism was increased from +2 to +5 and I asked why it was getting worse so quickly.  You would have thought that I’d asked why the Emperor wasn’t wearing any clothes!  It did however get me an appointment with an Opthamologist rather than an Optometrist.

Eventually I had an MRI scan which revealed that I, in fact, am suffering from Thyroid Eye Disease.  So much for previous doctors telling me that (a) I don’t have a problem with my thyroid and (b) that the over range levels of thyroid antibodies racing around my system are “unimportant” and “insignificant“.  The fact that the double vision started a few days after a nasty bump on the head turns out to have been a coincidence and perhaps just Mother Nature’s way of drawing my attention to the problem.

For anyone who doesn’t know about TED, in simple terms it’s an autoimmune disease where the body produces antibodies which attack the eye tissue and cause swelling which can push the eyeball forwards, giving a bulging or staring appearance.  It’s more often associated with overactive thyroid but can affect those with an underactive thyroid.  All standard medical texts seem to indicate that there’s nothing much you can do to halt the progress of the disease, which can get progressively worse for 6-12 months and it can take up to 2 years for the inflammation to settle.  Once it has stabilised, the swelling may not improve and patients are left with surgical options to decompress the eye socket to relieve the pressure.  That’s a simple breakdown – there is obviously a lot more to it.

The facts are that, for me, it’s only in one eye and is relatively mild.  I have asked whether there was anything I can do to help myself as I really wasn’t happy about the deterioration, only to be told “no, not really”.  I decided at that point that more research was in order.

I have now been mentally fighting this for the last seven months.  I have read a great deal about the disease and have seen its potential progress.  I started taking selenium supplements almost immediately that someone suggested TED and have scoured the web looking for ways to help myself.  I’ve found eye exercises which seem to help keep the eye moving and have been able to reduce the strength of the prism to correct the double vision slightly.

The standard approach seems to be doom and gloom and “it’ll probably get worse”.  “Let’s wait and see” they say.  They tell me that once the eye has stabilised, I may want to think about surgery to decompress the eye socket.  Not on your fucking life, I say.  No doctor is going anywhere near my head again with a scalpel or any other surgical equipment If I can possibly help it.

There are mornings where I wake up and my right eye seems to want to look down at the carpet, rather than straight ahead.  It can be quite disconcerting to catch sight of yourself in the mirror with one eye and see the other eye looking in a completely different direction but the fact is that my eye has now been pretty much stable for four months.  Ever since I started helping myself.  Funny that.

I’m still self treating my (non-existent) thyroid problem and doing my best to get my antibody levels down.  Despite being told that the best thing for TED is to keep the thyroid levels stable and that I have thyroid eye disease I don’t have any official acknowledgement or medical diagnosis of a thyroid problem, despite the opthamologist telling me that my GP should be helping me to take care of my thyroid.  Yeah right.  Fat chance of that.

I think what I’m trying to ramble on about here is question everything, read, research, take responsibility for your own health as much as you can.  There is a wealth of information around and, as long as you’re selective about your sources (i.e., don’t automatically trust the first thing you come across) you can go a long way towards helping yourself without drugs and without standard accepted medical intervention.  Just know that there are some medical conditions which can’t be fixed overnight – I’ve had to adopt a long term view of TED and accept that it will probably be another year or two before it resolves, if ever.  I may always have a squint in one eye now but you can bet your arse that I’m going to do everything in my power to make sure that’s not the case.



4 thoughts on “About Thyroid Eye Disease

    1. At least there’s one thing to be grateful for – at least this one doesn’t tend to rob you of your vision – just sends your eyes in the wrong directions!

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