OVER TO YOU: Double Trouble

The next day I rang my optometrist and she referred me to an eye specialist. I saw him fairly quickly and he thought that I either had Myasthenia Gravis or Graves’ disease. I had heard of Myasthenia Gravis as a distant relative of my grandmother’s had it. It is a terrible disease of which there is no cure. It affects all the muscles in the body. I hoped that I didn’t have that!

He examined my eyes very carefully and even measured the distance with which the eyes protruded out from the face. He suggested I use eye masks (which can be bought from the chemist) to help reduce the puffiness of my eyes and well as propping up my bed at the head, and making sure I wore sunglasses outdoors to protect my eyes from the light.

We did try to prop up the bed, once with bricks (very dirty and messy on the carpet) and then with old telephone books, (not a good idea, as they tended to slip and slide about). In the end I was propped up with four pillows. We used to joke about it - that I was the ‘Titanic’ and he (my wonderful friend) was just a little tugboat, way down below sleeping on only one pillow. Even now I still sleep with two pillows.

Basically I did everything I could to elevate my head while sleeping. The reason for this is that if you are lying completely flat in the bed, the five or six muscles behind your eyes are more likely to become filled with fluid. It is this build-up of fluid which causes the eyes to protrude and to alter the way we see, ie. the double vision.

At this time I also had X-rays taken of my eyes, so that the eye specialist could see the muscles behind the eyes and observe exactly how swollen they really were with fluid.

My local GP had put me on some tablets to help with my trembling hands and perspiration. When you have Graves’ disease, your whole body is working much too fast. Your heart beats faster, food passes through your system faster, you go to the toilet more frequently, you seem to be more hungry, but you don’t gain any weight, in fact, you often lose weight and you can perspire more quickly. However, everybody doesn’t always have all the same symptoms.

I was then referred to an endocrinologist. He sent me off for blood tests which confirmed that I had Graves’ disease. I also had a test in which they inject radioactive iodine into your body to take a closer look at your thyroid gland. My experience at this big public hospital with this team of technicians was not a very good one.

Once you swallow this medication, you have to lie perfectly still for about twenty minutes. Then they return, move the machine to another position and you lie still again. This goes on for about six or seven times. The machine takes ‘pictures’ of your thyroid gland. Once they had finished doing this they asked me some questions. I was not given the opportunity to ask them anything, as they just wandered off and left me. I was so annoyed at the way in which they had treated me, that I wrote to the Head of the Department. He wrote back to me apologising for their lack of consideration. He said he would speak to those involved and get them to improve their ‘communication and people’ skills. I couldn’t help wondering how people with little or no English would feel, as I came away from the place feeling very low. I had to stay away from pregnant women and babies as I was radioactive. However, after a few days the radioactivity would have left my body and it was OK to be near people.

On seeing the endocrinologist, he gave me a thorough examination, weighing me, checking my reflexes, listening to my heart etc. He explained the type of tablets he was prescribing and told me what to watch out for in the way of side affects. He was very caring and said if I had any problems I could even ring him at home. He stressed the importance of taking the tablets regularly, which I did.

Thinking back as to how I felt about this disease I realise that I was quite depressed at the time. With any change to your health you eventually have to come to terms with it, whether you like it or not. I was very lucky in that where I worked there was a counselling facility and I was friendly with one of the women there who kindly photocopied information on the various tablets I was taking and listened and talked to me whenever I needed her.

One of the problems with this disease is that the symptoms can be so subtle that when they occur, you don’t even notice them at first. Things like scant periods I just put that down to the fact that I was getting near the menopause stage of life. I would walk to the bus stop, about ten minutes walk, and would be dripping in perspiration, and maybe think that I was just very unfit (which I am anyway).A slight tremor in my legs one day, and I remember thinking, I wonder what that is, but then, quickly forgot about it.

At least with the double vision I acted quickly, under the impression that there was something wrong with only my eyes. Never dreaming that it was my thyroid gland that was causing all the problems.

Unfortunately with Graves’ disease, the eye problem tends to run independently from that of the thyroid. So, even though my endocrinologist gradually got my thyroid under control, my eyes were getting steadily worse.

It began from the minute I woke up and looked around the bedroom. Yes, everything was double. This would last initially for about ten minutes. Then fifteen, then half an hour. Usually, by the time I was on the bus going to work it would have stopped.

Then one morning at a staff meeting it started again. This created problems for me at work as I use a computer every day and everything was double, unless I either covered or closed one eye. I even bought an eye patch (black of course, like a pirate’s) but it was too uncomfortable to wear, and besides, it drew attention to my eyes, which was the last thing I wanted.

By the end of the day, when I was tired from work, relaxing reading a book or watching TV again meant winking or holding one hand over my eye. It became obvious that there was only one avenue left to try, and that was taking steroids. I had resisted this course of action because of the many nasty side affects. However, as my eye specialist pointed out, there was no other drug he could offer me. The old “between a rock and a hard place” situation.

Initially I was put on a very high dose and then gradually it was lowered over about two months. One of the worst side affects for me on the steroids was thrush.

Prior to starting the course of steroids, I took the precaution of having a bone density test which showed that I had some bone loss in my left hip. I haven’t had it checked again since taking the steroids so don’t know if I have had further bone density loss. The steroids did the trick, in spite of their side affects. Cortisone does tend to make you feel pretty fantastic. I guess there have to be some positives. More importantly, it worked in reducing the swelling of the eye muscles. Gradually the dosage of the steroids was reduced until I stopped taking them altogether.

With regard to the tablets for the thyroid, over many months, and frequent visits to the endocrinologist, (always preceded by a blood test), I gradually reduced my intake to 1/2 a tablet every second day. It occurred to me that if this was all that was needed to keep my thyroid ‘on an even keel’, things must be improving. It’s been eleven months since I stopped taking any medication for the thyroid or for the eyes. I no longer see the eye specialist, but see my endocrinologist every six months.

All in all I think I have been very fortunate in that I no longer have double vision, my eyes do not protrude, my thyroid gland (touch wood), is behaving itself, and thanks to the care and attention of very good specialists and my GP, understanding friends and work colleagues (who know about my condition) and most importantly, the love and understanding shown by my friend without whom I could not have managed. Thank you sweetheart.