‘I have a crazy disease no one has ever heard of’
MY hair is falling out, I get headaches that last for days, my nails are literally crumbling, my eyes are often sore and red, and sometimes my body hurts for no real reason.
I am one of the lucky ones.
I have a disease that almost no one has heard of but is more common than you think - only for many people a diagnosis takes years of suffering, unexplained symptoms, mental anguish and disappointing or confusing trips to the doctor.
One million Australians could be living with something similar. They just don't know it. Women are ten times more likely to be affected.
I have Graves' Disease, so called not to conjure images of the grave but after the man who discovered the disease.
It's a thyroid disease. The thyroid regulates many of the body's basic processes including heart rate, body temperature and hormones.
When I first went to the doctor - after about two months of saying to myself 'I need to go to the doctor' - I wasn't really expecting a dramatic outcome.
I had been having hot flushes and since I had just turned 30, menopause wasn't an obvious answer.
The hot flushes weren't too frequent but sometimes I felt like I was having heart palpitations. I'd lie on my pillow at night listening to my heart beating quickly in my chest.
I've never really had trouble with acne before but suddenly I was noticing all these tiny pimples popping up across my chest. Weird, I thought but then maybe this was part of turning 30. My chest was red too, like I was sunburnt but hadn't been in the sun. Also weird.
So I went to the doctor.
Now I have a great GP who has had a varied career and areas of speciality. He listened to me, checked my heart rate and we talked about family medical history.
He asked to look at my neck and noticed I had a small goitre - meaning my neck, under my voice box was swollen. Sitting across from me, he calmly looked at my eyes and asked about the hot flushes, whether my periods were regular, and did I have any diarrhea - common symptoms of Graves'.
He said I think you have Graves' disease then explained what that was and gave me some blood test orders along with an order for a scan of my neck. Tests came back, and it was positive.
It wasn't entirely a shock. I think somewhere in the back of mind I knew the tests would be positive. I knew something wasn't quite right in my body. Once he said it, I could feel my neck was swollen.
It wasn't exactly a relief to have a diagnosis either, but it was a comfort to know a treatment plan was the next step. To know there was a real reason behind this feeling I had that something was wrong.
The specialists that treat thyroid disorders are endocrinologists and they are generally booked up months in advance, the goods ones anyway.
I have a good one. My GP was concerned because I was obviously in an active cycle of Graves' Disease, which means my sh*t was all over the shop and descending into chaos - (see below - What is Graves' Disease? for an actual explanation).
I got in to see an endocrinologist within a week.
Turns out my resting heart rate was more than 90 beats a minute where normal is about 60. It meant walking up a gentle slope or small flight of stairs was exhausting. My hands were shaky, and my muscle strength was deteriorating.
I was prescribed a drug called Carbimazole. I was warned about a rare allergic reaction that occurs in a small number of people, and to be on the lookout for signs including swollen glands and a sore throat. About a week after I started taking the Carbimazole my throat began to feel sore. I was at work when I noticed my glands were quite swollen. I phoned my specialist who told me to leave work immediately, go to the closest pathology clinic for an urgent blood test then go home.
The urgent tests came back that day and confirmed I was experiencing an allergic reaction. My white blood cells had been depleted making me vulnerable to infection of any kind. Like a cold can be deadly if you have no white blood cells.
Up until this point I had been very calm and practical about the whole thing. When she phoned and said tests confirmed the allergic reaction and she would organise a consult with a surgeon straight away, I broke down.
I had to try and calm myself to listen to what she was saying over the sound of my sobbing.
My endocrinologist wanted to move straight to scheduling surgery to remove my thyroid because my levels were quite high, and the medication was no longer an option. That was daunting. I had to stay home for a week, avoiding people and their possible germs.
This had all happened in the space of two weeks and the thought of someone cutting my neck open to remove an essential gland suddenly became overwhelming. The day after the allergic reaction was confirmed, I asked my endocrinologist if I could try an alternative drug called Propylthiouracil (PTU), usually given to pregnant women undergoing treatment for Graves'.
She agreed to a closely monitored trial and lucky for me, the medication suited me.
Fast forward to now, I've been on medication since September 2018. It's going well enough and most of my initial symptoms are gone.
But my hair is falling out, probably five times more than usual, and my nails are rubbish and sometimes I get headaches. Sometimes my eyes hurt - which is actually a different - truly terrifying - associated disease called Graves'/Thyroid Eye Disease which is also explained below.
I am glad I didn't ignore my symptoms or explain them away as I could have easily done.
I don't know what the future holds for me and that's scary. But believe me when I say, I am one of the lucky ones.
(Read Bev's story below)
What is Graves' Disease?
Graves' Disease is an auto-immune disease and the most common cause of hyperthyroidism, often triggered when people reach their 20s and 30s.
The thyroid - a master gland that sits below your voice box - that during hyperthyroidism produces too much thyroid hormone. This is explained in more detail here.
It's the result of mixed messaging within in your own body where the normal function that controls the chemical messages telling your thyroid how much to produce is interrupted. This can have a huge impact on your body in a variety of ways as your thyroid gland is responsible for regulating key processes in your body like heart rate and body temperature.
Essentially, having too much thyroid hormone in your system causes everything to speed up.
Professor Bruce Robinson, an expert endocrinologist who now specialises in thyroid cancers, explains the impact of Graves' Disease using this simple analogy.
"I describe it to patients a bit like the carburettor in an engine that regulates the amount of available fuel in a car," Prof, Robinson said.
"If there is too much fuel getting through, the process speeds up. If there isn't not enough, it slows down.
Quick fact: The thyroid gland takes iodine, found in many foods, and converts it into thyroid hormones:thyroxine (T4) and triiodothyronine (T3).Thyroid cells are the only cells in the body which can absorb iodine. These cells combine iodine and the amino acid tyrosine to make T3 and T4. T3 and T4 are then released into the blood stream and are transported throughout the body where they control metabolism (the conversion of oxygen and calories to energy).
Every cell in the body depends upon thyroid hormones for regulation of their metabolism.
"If there is too much hormone, the heart goes faster. If there isn't enough it goes slower. If there is too much, the skin will be hotter to touch. If there isn't enough the skin will be cold. Too much and the bowels will become overactive, not enough and the bowels will become blocked up. The more thyroid hormone the faster weight will be burned up, with less, people will put on weight.
"They're the fairly straight forward symptoms of thyroid over or under activity.
"Then there are a number of other symptoms, which can occur for both under activity and overactivity, and they include things like tiredness, hair falling out, general lethargy."
Other than these physical symptoms, some people with untreated Graves' Disease can also suffer significant mental issues.
"People who are overactive tend to be anxious, they may also develop depression or even psychosis such as hearing voices etc.
"For people with an underactive thyroid, depression is more common."
About one million Australians may be living with an undiagnosed thyroid condition and women are 10 times more likely than men to be diagnosed with a thyroid disorder - with about 60,000 new cases diagnosed each year.
Prof. Robinson said the main reason so many cases went undiagnosed was because the symptoms could be subtle and explained by other, unrelated disorders, so the thyroid wasn't often thought of first as the possible cause.
For women at menopause age, thyroid disorders can be difficult to diagnose initially as the symptoms can be similar to that of menopause.
Prof. Robinson said anyone who could relate to the below symptoms should speak to their doctor and push to take the necessary blood tests to diagnose a thyroid disorder.
Symptoms of hyperthyroidism (too much thyroid hormone) can include;
- Weight loss/increased appetite
- Loose bowel motions/ diarrhoea
- Increased sweating
- Difficulty sleeping
- Heart palpitations
- Hand tremor
- Tiredness/weak muscles, particularly around the upper arms and thighs
- Enlarged thyroid gland
- Menstrual changes/ fertility problems
- Restlessness/ nervousness
- Emotional/ irritability
- Shortness of breath
- Protruding or staring eyes - (Thyroid Eye Disease connected to Graves' Disease)
Treatments for Graves' Disease include medication, radioactive therapy and surgery. See here for more information.
Thyroid Eye Disease - the stuff of nightmares
In addition to having Graves Disease, I have Thyroid Eye Disease, often called TED. For me, the symptoms have been relatively mild.
My right eye was slightly protruding when I first saw my specialist which made it look a bit like I was staring at something really intensely, with just one eye.
Fortunately for me, the protrusion has gone away and other than having soreness, some swelling and redness, it hasn't gotten worse (so far). I use special eye drops every night before I go to sleep, to minimise the irritation overnight.
For many suffers, Thyroid Eye Disease is a rollercoaster of emotions and a truly terrifying, debilitating disease that quite literally ruins lives.
The below image is mild when it comes to displaying how disfiguring Thyroid Eye Disease can be.
According to the British Thyroid Association, about one quarter of people with Graves' Disease will develop TED either before, during or after their thyroid disorder is diagnosed.
In extreme cases, TED can cause blindness and some people will need to undergo multiple surgeries just to be able to maintain their vision.
Common symptoms of TED include;
- Change in the appearance of the eyes (usually staring or bulging eyes)
- A feeling of grittiness in the eyes
- Dry or watery eyes
- Dislike of bright lights
- Swelling or feeling of fullness in one or both upper eyelids
- Bags under the eyes
- Redness of the lids and eyes
- Blurred or double vision
- Pain in or behind the eye, especially when looking up, down or sideways
- Difficulty moving the eyes
The fear of this disease progressing is what frightens me the most. There are no words to capture the empathy I feel for people who have to struggle through the extreme symptoms and impacts of this disease.
Prof. Robinson agreed, saying in all his years of treating patients those with TED were one group that stood out in his memory.
"I've had a few patients who have absolutely horrendous Graves' Eye Disease," Prof. Robinson said.
"Many sufferers require local therapy such as eye drops, or they wear glasses to prevent the wind drying their eyes out. The second tier of patients are people who need topical steroids, then oral steroid are the next step.
"Then you move into a range of other options to consider which can include chemotherapy, radioactive therapy or even surgery which is often staged and quite complicated so can't be performed by many people."
Prof. Robinson said the sheer trauma for the patient, particularly if that patient was a woman, required a lot of psychological support.
"It often unfolds over quite a long period of time and there is a period of waiting where you can't do anything until the active phase is over.
"It is absolutely horrendous and emotionally, mentally traumatic for the patient."
Bev's story: 'My friends, family said I was crazy'
FROM the age of eight-years-old Beverly Garside knew something wasn't right within her body, but back in those days people didn't know as much about thyroid disorders.
She had lots of issues with her periods, was always slim, experienced anxiety and panic attacks but was never diagnosed.
For her entire life Beverley had lived with Graves' Disease slowly taking over, never knowing something was causing the thoughts, feelings and symptoms she had come to think of as normal.
"Graves' Disease affects everything - your thinking, mental processing and emotional state," Beverley now 62, said.
She wasn't treated until her 40s.
"If I look back now on how I was compared to how I am now - my family and friends blatantly said I was crazy sometimes - because of the way I would react to some situation, the way I thought.
"I had so much energy. I could do 10 things where other people could only do one. I couldn't sleep so I would be up in the middle of the night doing things like housework.
"You don't know that you are like that. You don't know this awful disease you have is making you like that - you just think, 'why are people so un kind? Why can't people just accept me?'
"They didn't know how to handle me - it was an awful way to live.
"Since having my thyroid removed, no one ever says anything like that to me anymore."
Beverley experienced tremors, migraine headaches, sudden weight loss, terrible period problems, heart palpitation, low blood sugar and lethargy. She also had constant diarrhoea.
"Sometimes, late in the afternoon I would be so exhausted I didn't want to eat. I didn't want to do anything. I didn't want to cook for my family - I did - but the tiredness was more important than anything for me."
Realising her thyroid was the source of Beverley's problems came from an unlikely place.
"I was in my son's school library one day and happened to find a little book about understanding your thyroid. I read about the descriptions of thyroid disease in layman's terms and realised," she said.
Beverley decided she wanted her thyroid removed. By that stage her thyroid was so swollen and covered in 'nodules' - small lumps, she would wear high neck shirts to cover it.
She sort out the best endocrine surgeon in Sydney and, with a lot of effort, she eventually persuaded him specialist to perform the surgery as at the time, Graves' Disease was not considered a reason to remove a thyroid.
Within 6 months most of her symptoms had subsided. Beverley now takes a drug called Thyroxin, which essentially mimics the hormones produced by the thyroid.
"From then on, I felt better," Beverley said. "It felt fantastic, to feel normal."
For Beverley realising that she had a thyroid disorder came with relief and devastation.
"When I found out it was my thyroid - well you get to know who your friends really are," she said.
"Back then people didn't understand, 'how could you blame a thyroid gland for the way she is' - they thought that was just me, the crazy one.
"That's why I do what I do," Beverley, who is now president of the Australian Thyroid Foundation, said of her day to day work, increasing understanding of thyroid disorders.
She doesn't want people to suffer in silence the way she did or face the kind of ridicule she was subjected to because of a lack of understanding.
Promoting surgery as a possible solution to Graves' Disease is also a passion for Beverley who is concerned not enough doctors thoroughly discuss options with patients.
"We regularly get calls from people who are very angry because their doctors didn't tell them about the option of surgery. It's not good enough for doctors not to explain all the options, it should be the patient's choice."
May is international thyroid awareness month. The theme for this year's Thyroid Awareness Month is 'The many faces of the thyroid', which aims to highlight the different types of thyroid conditions people may have. These include an overactive thyroid (known as hyperthyroidism or Graves' disease), an underactive thyroid (known as hypothyroidism or Hashimoto's disease), thyroid cancer, congenital hypothyroidism, thyroid nodules and iodine deficiency.
**Want to know more? Try these resources.
*The author of this article is a journalist and digital producer with News Corp Regional*