Male Member Story - Graves' Disease / Thyroid Myopathy
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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
behavioral 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 hypothythyroid 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 leukemia 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 up grade 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 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 done 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.


1  http://www.aph.gov.au/senate/committee/lucasheights_ctte/report/c02.doc.
2 Ibid
3  “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)
4   http://www.foodstandards.gov.au/_srcfiles/A528_Iodine_in_FSFs_DAR_Final.pdf.

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.

Thyroid WA Support Group Inc.  -  ABN  84 263 220 330