Jan A.’s Story about Ophthalmopathy in Graves Disease

Jan Armstrong
Jan Armstrong, Australia

Ophthalmopathy in Graves’ Disease and my thyroid  by Jan A., Australia

Jan A. is 61 years old and has 3 sons. She was born in England and immigrated to Australia in l976. She is a Psychologist and enjoys countryside, riding, yoga, dogs, cinema, reading, drawing, gardening, walking, friends, family, travel, creativity, writing and alternative health. 

When I got out of bed one morning nearly 3 years ago, my feet and lower legs felt so stiff and sore I limped off to the bathroom. I thought I’d overdone it at yoga the previous day, but the soreness kept coming morning after morning. It would wear off with activity so that was something. I didn’t really think much about it.  Just thought it was another sign of my age – 58 at the time.

A few weeks later my eyes became red and puffy like a bad case of  hay fever, which I didn’t usually get. They didn’t settle down well at all. Then other things started to happen. I felt very hot. Even hotter than I normally do in an Australian summer. My arms started to tremble and my heart felt like it was pounding for no particular reason. Most noticeable when I lay in  bed at night. Riding my bicycle on the flat left me puffed which was very unusual and I was also losing weight – the only benefit in the whole episode. My husband would probably tell you that I was ratty and irritable, but I wouldn’t believe that.  Though I do think I was anxious.

 I did go and see a cardiologist at this time. I had a year old referral just to have a check up because of heart problems in my family.   With my heart knocking away in my chest I thought I should get it checked out.  The tests showed that my resting heart rate was 102 beats per minute and his report mentioned significant abnormalities. I’m not sure my GP ever read the report because nothing happened.

One day my GP – where I also worked as a psychologist – noticed that my eyelids were retracted and gave me a blood test. Sure enough. Thyroid problems.  It was hyperactive.

I heard the results while away on holiday and had to urgently find a pharmacy where a prescription could be urgently faxed through. I started on one pill of neomercazole p.d. but my GP rang through again and said to up the dose to 6 x p.d.  At night I lay awake in a strange bed feeling more than a little scared and  wondering if I would live till the morning. A bit melodramatic but all this was rather a shock to someone who prided herself on being fit and healthy.

I am very interested in natural alternative health but nonetheless I went to see an endocrinologist. She sent me off for a nuclear scan which showed I had Graves’ disease and another scan to see if nodules were likely to be a problem. Fortunately, they weren’t.

Over the next months, I saw naturopaths, acupuncturists, an anthroposophical doctor and masseur, and read lots on the net. The first naturopath I went to had me tested for allergies, via a live blood test and scratch tests. The theory being that the digestive system needed to be healed before my thyroid could be healed. i.e. a faulty digestive system could be the cause of the problem. I went on a diet which excluded all the things I’d been allergic to.(there wasn’t anything greatly obvious) plus, I cut out dairy, alcohol, sugar, coffee  etc. All the usual stuff. I didn’t find it too hard. There was a lot to be gained. Also there was a whole heap of supplements to take. 

Unfortunately, this particular naturopath lived quite a way away from me and after a few stuffed up appointments, including driving all the way there to find her missing, I decided to try elsewhere. The second one was recommended by someone at work who had a similar problem, but without the eye troubles. He might have been on the right track, but I didn’t gel with him and because he was seriously overweight I didn’t feel able to trust his advice.  

In the meantime I went to see an eye specialist. In fact I’d been to see him with my hay fever symptoms, and he hadn’t picked up my thyroid problem. Giving him the benefit of the doubt I went back again with the new diagnosis. Because I had been referred to him via a friend, he looked at me in horror and said “it would be just my luck that because you are a friend of a friend that this will be a really difficult case. If you’d like to go elsewhere that would be fine with me.” This was after he had told me that the worst case scenario was that I could go blind. 

I left in a hurry and never went back. The next guy I went to was much more reassuring, though he was so popular (or disorganized) I ended up waiting hours in his waiting room for each appointment. I had to do field of vision tests which were averagely ok. Though I think I might have fudged some of it! The pressure in one of my eyes showed glaucoma, caused most likely by the ophthalmopathy in Graves Disease. For this I have to use one drop per night of Xalatan. I also put an eye gel in my eyes at bedtime (I should do this more often) and wear an eye mask (courtesy of the airlines) which helps to keep my eyes moist overnight. They were drying out badly at the beginning and felt like I had broken glass in my eyes. 

Having a mouth full of amalgam, I decided to have it all taken out.  Ugh! Have hated the dentist for ever. I need gas to even walk through the door. However, I found a lovely alternative, holistic dentist, who forgot to give me chelation therapy, it turns out. But she was very gentle and understanding. Mostly! It took a few weeks to remove them all – with long intervals in between sessions. However, towards the end, my heart started palpitations!!! I went back to the doctor who recommended a blood thinner (warfarin) and a beta blocker. That was rather nice. I felt very calm on that. A heart specialist was the next visit. That’s enough to make anyone’s heart go erratic. Because of the drugs he gave me I had to have a blood test every other day or so to check I was getting the right dose and my blood reacting correctly. This went on for a few weeks but eventually I was given the all clear and was able to go off the heart drugs. 

All this time I had been having acupuncture. I think my eyes were improving – though what it was from is hard to know. Resting for an hour in beautiful surroundings with needles sticking into me was a lovely relaxing thing to do. 

I did try neuro cranial therapy but only once. And also a different form of chiropractic. By this time I was taking herbs, had tried Chinese herbs and homeopathic drops and I felt my life was revolving around appointments and remembering which pills, drops etc to take when. So I stopped most things.

Now, I just take one neomercazole tablet p.d. (tried taking just a half tablet but blood test results told me to go back to one tablet). On half a tablet per day my T3 and T4 are ok but TSH is 0.21. On one tablet p.d. the TSH is 0.69 and my TSH receptor antibodies are still present at a low titre of 1.6 IU/L.. 

I take herbs, Bugle Weed, Hawthorn and Motherwort. When I remember, I take other supplements such as magnesium, vitamin B’s. There’s a whole stock of them in my cupboard. Most of them half empty. I read an article and get enthusiastic, rush out and buy what I’ve read about. The enthusiasm wanes after a while. 

 I came across Svetla’s site and loved the encouragement she gives.   I don’t know that I have changed my life greatly. I think what I really need to change is my thinking and my attitude and approach to some of the problems I face. Meditation I believe can help me with this, but I find I don’t do it as much as I should. It’s ridiculous to say that life is too busy to meditate.  

Its 2 ½ years since my diagnosis. I stopped drinking until Christmas last year and now enjoy a glass of wine when I want. I also started to eat chocolate at Christmas and didn’t stop until recently. Maybe it’s the chocolate and maybe it’s the thyroid stabilizing a little, but I’ve put on weight and need to do something about that. 

Last blood test results and everything was normal. I’ve been there before. I’ll be really happy when its all normal and I no longer take my neomercazole.