I am a 51 year old male. I was diagnosed as having Graves' disease when I was 39 years old following a gradual deterioration in my health in the previous few years.
At that time I was leading a very busy and active life. My wife and I had three young children and were building a new home while house-sitting across town. While saving us money; it involved a lot of traveling. I was teaching in a private school with limited resources and a disproportionate number of students with behavioural and learning difficulties. The first summer that I noticed there was a change in my health was when I could not tolerate the heat and was hand watering the garden well into the autumn evenings just to feel the coolness of the lawn and to splash myself with the cold water while the rest of the family were inside keeping warm. I also craved fresh air and had chronic bronchitis. I also noticed that when I went to funeral down south in the winter, I was the only one in a shirt while everyone else was rugged up against the cold. Also, my mind was racing at a hundred miles an hour and I had difficulty maintaining my weight, despite eating well. I was so hungry that I would snack on a large plate of breakfast cereal during the day. I was not sleeping well and in the morning, my bed would be wet from perspiration.
My GP at the time suggested that I was simply stressed and overly anxious and that besides treating me for asthma to help with my breathing, there was very little he could do for me. I had a resting pulse rate of 120 and was getting very tired, all the time. I was also having difficulty with my eyes which were sore and bloodshot as well as having trouble focusing. Feeling physically tired and run down after a bout of influenza, I took supplements containing Echinacea Guarana and Ginseng thinking they would help restore my energy levels, not knowing that supplementing with Guarana is not recommended for people with overactive thyroids! Even though it was winter, I was feeling very hot all the time, not sleeping well, and felt the need for fresh cool air. So I spent the evenings renovating wooden furniture in an old open air shed at the back of the property where we were living. I had developed what my GP at the time thought was Asthma and was given Ventolin to help with my breathing, but my health only deteriorated. One of the warnings associated with the use of Ventolin is to tell your doctor if you have a thyroid condition!
After we moved into our completed new home, I went to another GP for a second opinion and he ran a battery of blood tests to investigate my symptoms and discovered that I was extremely thyotoxic. When the results came through, he telephoned to say that he didn’t want to alarm me, but that I was to go home immediately and rest as he would have difficulty reviving me if my heart gave out.
From that point, things moved fairly quickly and I was put on PTU ( Propylthiouracil (PTU): A drug that blocks the production of thyroid hormone by the thyroid gland.) to lower my thyroid levels to within normal range. It was a very difficult time for me as, on one hand, I was relieved to discover what was causing my symptoms, but on the other hand, I was struggling to come to terms with my mortality and the implications that this disease would have. Unfortunately, the new GP who had found I was thyrotoxic, moved away and I went back to my original GP who referred me to a specialist to handle my case.
The specialist diagnosed me with Graves’ disease mainly because I had a family history of Thyroid disease with two Aunts on my father’s side who were hypothyroid and an Aunt on my mother’s side had Hashimoto's and my Grandmother was hypothyroid. I felt he had very little bedside manner and was unable to communicate well. He was officious and very empirical in his manner and offered me three choices but strongly recommended that I take radio active iodine to stop the over productive thyroid gland as I would not be able to stay on PTU.
In my mind, I thought that it was the right thing to do as I would still have a thyroid gland, rather than to have it removed by surgery. He said that to stay on the PTU would likely result in my developing leukaemia within two years. Strangely, he did not withdraw the PTU to determine if the thyrotoxicosis had settled down and proceeded to pressure me into making a decision about having the thyroid gland removed. He did not recommend surgery as there was the risk of severing the nerves to my vocal chords which could spell disaster to me as a teacher. I did not fully understand the implications of taking the Radio Active Iodine and feel that I should have been given time to test whether staying on the PTU would have helped. I would have done anything as an alternative to keep my functioning thyroid gland knowing now that replacement thyroxine does not substitute for the complete function of the thyroid.
I did not fully realize that taking R.A Iodine 131 would mean I would have no further production of thyroxine, thinking that once the treatment was over and the gland had settled down, that I would feeling well again. So I agreed to trust his better judgment and to rely on the specialist to make me well. After the swallowing of the R.I.A., administered at the nuclear medicine unit in S.C.G. Hospital, I was sent home and subsequently became euthyroid and eventually hypothyroid and was started on thyroxine.
On my last visit to my Thyroid Specialist, he told me that I should be well and that any complaints I had would necessitate being referred to a psychiatrist. Even though my blood tests indicated that I was now in the “normal range” I was still feeling unwell but I was determined to cut my connection with the specialist so I said that I was fine!
What I did not know at the time was that nuclear medicine was a political hot potato. In 1987, Senator Evans stated that “The Atomic Energy Commission has already made a major contribution to the development of nuclear medicine in Australia and currently supplies more than 50 hospitals with a wide range of radio-pharmaceuticals. The medical radio-isotopes supplied represent a total of about 100,000 patient doses per year.” (1)
In 1992, The Australian Science and Technology Council reported the necessity to have a new facility in Australia to continue “the production of radioisotopes for at least 300 000 medical procedures annually in Australian hospitals,” (2)
Some specialists in the medical fraternity at the time felt pressured by the government of the day to demonstrate the necessity and importance of the Lucas Heights facility to produce medical isotopes, so that another facility could be built to upgrade the ageing facilities.(3)
I was put onto replacement thyroxin of 150mg and for two years thereafter I continued to have issues with my health before having to leave teaching for a term to regain my strength. My problems consisted of a sudden elevation of cholesterol levels, muscle pain and unexpected muscle failure in my hips, shoulders, thighs and arms. I also had difficulty swallowing and speaking and could no longer run or swim out of my depth.
To combat rising cholesterol levels, I was put on a series of different cholesterol lowering drugs that only made my muscle problems worse to the point that I ended up in a wheelchair from not being able to walk any distance or to be able to lift my feet off the ground. I couldn’t step over a hose on the ground! When I experienced difficulty breathing, I ended up in hospital for a few days and was taken off all cholesterol lowering drugs and I made a remarkable recovery.My discharge notes hinted that my condition was related to anxiety and no mention was made of the danger of the particular brand of cholesterol lowering drugs, which have since been proven to cause muscle weakness in some cases. I returned to my teaching job once again only to find that I was given a different job, which meant more work gathering resources and starting all over again. I had two more years with a different work situation each year.
My last teaching job was with disabled children, but the unit was small and not air-conditioned. During the day I was always hot and clammy and would spend my lunchtime sitting in the cool room of the school canteen reading travel magazines of Scotland, to try and cool my brain! I noticed that I was having difficulty walking to and from classes and would often stumble and fall. I lasted until after Easter that year before I was given leave with a possible diagnosis of chronic fatigue.
On good advice from colleagues of mine, I visited a prominent psychiatrist who recognized my Thyroid difficulties. In his training he had come across and said rare cases where people develop Thyroid Myopathy through not responding to replacement hormone, but the chances of that are one in five million. He said there was nothing of a psychiatric concern to him with me and that I must remain positive, implementing all the cognitive therapy tactics that I was employing and that I should work at not becoming depressed and that I should get good advice as there was definitely something of an organic nature that required attention.
I changed GP’s after the one I was visiting could help me no longer. He had exhausted his list of specialists and I felt that he was not able to further my cause. In fact, the evidence was piling up against me so it was to my benefit that I found a sympathetic GP to engage with the insurance company and to find the exact nature of my condition, as the diagnosis of chronic fatigue being one of default. My time of being away from work dragged on and eventually, I was given a total and permanent disability payout and put on sick leave through my insurance. That was over seven years ago and in that time, I have visited many doctors to try to get to the reason for my muscle disease.
Five years ago it was confirmed through a muscle biopsy at Royal Perth Hospital that I did indeed have Thyroid Myopathy so one in five million is just bad luck! I have had regular medical appointments to various doctors appointed by the insurance company over the years, ranging from neurologists, general physicians and psychiatrists. After each visit a report is sent to my GP who has been frustrated by their lack of knowledge and experience with the ramifications of Thyroid disease. Also, as a patient, I have found it very difficult and frustrating to have to re- tell my story from the beginning, instead of them taking the time to read my file and then to take my case at face value. Owing to the inconsistency of my symptoms and level of wellness at any given time, I have battled to chart an even course through pain, fatigue, and cramping and muscle weakness.
Treatment that I have been given through my GP has been excellent but I have also had to get to the point where I have taken a lot of the responsibility for my wellness onto myself.
At this stage, the medications I am taking are being reduced and I am trying to reduce my dependence on opiates to control pain but still require them every eight hours. I require an anti-epileptic drug to control muscle spasm and have been using a new drug to control my cholesterol levels as well as fish oils at each meal, psyllium husks and a high- fibre diet. I have found it important to have excellent water quality and drink only rain water or reverse osmosis tap water. I eat mostly organic products, use spelt flour instead of wheat, eat very little meat and exercise in the water regularly. I had a lot of difficulty maintaining a comfortable temperature and would experience a feeling of ‘meltdown’ after walking far, for long so exercising in the water enabled me to increase my stamina and endurance.
My eldest son developed Thyrotoxicosis a few years ago when he was under a lot of stress with his studies and following a course of PTU, he managed to achieve normal blood levels again. Incidentally, he was still attending one of the GP’s that I stared with originally and it was partially because of the difficulties that I had experienced that the GP took my son’s case seriously and found him very good specialist help. We also took matters into our own hands and following advice from alternative therapies, we used only reverse osmosis water to reduce the toxicity of fluoride and chlorine in the water he was drinking. We also wanted to reduce the iron, calcium and magnesium content in his diet and water as they too were thought to have had an effect on the absorption of iodine. We also eliminated raw brassica vegetables, peanuts and soy from his diet as they have been thought to reduce the uptake of iodine from the stomach and small intestine due to the presence of goitrogens in these foods, thereby having an effect on the thyroid gland. (4) Today, he is well and has had no further health issues and is married and going from strength to strength. Through a very dedicated, understanding, long suffering and supportive family and a strong group of friends who have refused to give up on me, I have had an amazing support group, but until now, I have known no other people with thyroid disease who really know what it feels like to experience the condition and to know it from the inside.
Since developing Thyroid disease I have looked extensively on the internet and am thrilled that the WA chapter of Thyroid Australia has raised its profile.
With the benefit of hindsight, I can now see many things I would have changed regarding the choices that I made at the time. But with the advice and knowledge that was available to me at that time, I probably wouldn’t have one anything differently as I did not have any support from anyone who had been down the track before me.
I would never have taken the option of swallowing the radio isotope if I was aware that I was a part of a national ploy to maintain or upgrade a nuclear facility, knowing that I agreed to something that goes against my political grain and my environmental sensibilities! Hopefully, I can now learn from others and may be of some help to someone else though my own experiences and also look forward to not having to travel the road ahead on my own.
- “The real agenda behind the federal government's plan to build a new nuclear research reactor has little or nothing to do with producing medical isotopes or furthering scientific research. It involves a set of convoluted national interest/security arguments. Essentially, the government wants to maintain a pool of nuclear expertise in order to monitor nuclear programs abroad and to pursue its objectives in international fora. The government also wants to keep its hat in the ring in case a future government decided to produce nuclear weapons or nuclear power. Last but not least, the reactor will be a prop for Australia's uranium industry.” Jim Green 1998. (http://www.sea-us.org.au/no2reactor/thetruth.html)
Any opinion expressed in the members' stories may not necessarily reflect the views of THYROID WA SUPPORT GROUP INC. THYROID WA SUPPORT GROUP INC. disclaims any liability whatsoever.