It was October 2016, I was going about my business filming a scene for an acting group I’m a part of, and got a sudden dizzy spell. I didn’t think much of it as I’d been having a lot of them but they never came to anything so I didn’t let them bother me. This time was different, it persisted, I got a sudden cold icy rush up and down my body, my hearing disappeared and I saw stars. I dropped to my knees and remember opening my eyes on the carpet. I was shivering, my heart was racing. I was in ‘fight and flight’ mode. I knew I was in trouble and crawled out to my partner who’d heard me talk of dizzy spells before. He wasn’t really concerned, just thought I was stressed. That evening my heart continued to race steadily resting at 89 bpm. I knew this was not the norm for me so I continued to monitor it over the next two days. It gained speed and nothing I tried would calm it down. I checked into Emergency where they checked my heart rate, did a few balance tests and sent me on my way putting it down to anxiety. Anxiety? But I’m not stressed! I trusted them and went on my way.
I had been feeling what I thought to be anxiety, in fact I was beginning to get crippled with it. I was having trouble leaving the house and when I did I would panic, sweat and do everything I could to get back to home where I felt calm and safe. I didn’t tell my family about it as I thought I may have a mental illness and was embarrassed. I thought it would pass.
A few weeks later I went out to a pub and had a good drinking session. Heart rate started to sore and the hangover was something I’ll never forget. I had never vomited like that before, my heart was skipping beats and my head pounding. I thought I was dying. I was, I just didn’t know it. After 48 hours I felt somewhat normal so put it down to a particular wine obviously not agreeing with me.
I live in a country town and it was always hard to get a doctors appointment within four weeks. I still wasn’t feeling right and my heart rate was still high so booked in with a locum two weeks later who said I had anxiety. “Anxiety! No shit, but what is the cause?” The doctor told me to slow down and stop stressing and I will get back to ‘normal’. I work casually, I live in a country town, I’m happy and I’m not stressing out. Perhaps my subconscious is stressed about something so I will just accept that and move forward. One week later I managed to get in for another doctors appointment after a cancellation. I showed her a couple of blotches or hive like sores that appeared on my back. I tried all sorts of creams to no avail. The doctor told me to get a particular cream from the chemist and not to worry about it. I was covered in acne, especially on my neck, it made me feel awful. They sent me on my way again and told me to stop stressing out. My hair is literally dropping out from worry now.
Two weeks later, I was at work in the shop, it was 40 degrees, stinking hot. I was not feeling great, my heart rate was uncontrollable and I was so dizzy I felt as though I could barely stay conscious. I checked my heart rate on my phone app and it said it was 138 bpm. I wasn’t chancing it any more so checked into emergency. The nurse who did my arrival state blurted out “OH SHIT”! My Blood Pressure and Heart Rate were at critical levels. I remember having all sorts of things getting stuck onto and into me. I could barely speak as I kept passing out. They gave me an iv with fluid and kept thinking it was heat exhaustion as it was mid summer. My sister’s face said it all as she checked my stats on the monitor. I knew I was in trouble, I thought I was having a heart failure, so did they. It was a long six hours, heart rate still high, bp down a bit but still high for me. They found something on my chest and suggest I may have a viral infection which is why my temperature was so high which in turn would effect my heart rate. They sent me home.
That was a night I will never forget. I was crawling on the floor in my lounge room, trying to stay alert, trying to keep the demons away, I knew I was fighting for my life. I’d never felt so hot.
The next morning I was laying on the bed, drenched in sweat, constantly checking my heart rate when the phone rang. It was a local doctor who asked where I was and what I was doing. I replied “I’m having an anxiety attack”! She replied “No you’re not, you have hyperthyroid disease and are critical”. I almost blacked out and began to panic. I was put straight on medication for my heart and for the hyperthyroid. I was not expecting that result but in a way I was finally relieved to find something.
I was booked in with an endocrinologist who upon meeting seemed fairly uninterested, as though I was another one through the doors. I had no idea just how many people had thyroid disease and how bad it was. The waiting room was full. He did a few tests and sent me on my way with a bunch of pathology slips dated over the next few months. He told me it looked like I had graves disease so I was sent off to another bigger hospital for a nuclear medicine thyroid scan. A nuclear medicine thyroid scan uses a radioactive medication (radiopharmaceutical) to take pictures or images of the thyroid gland. The radiopharmaceutical is injected into a vein, usually in the arm, and enters the thyroid gland from the circulating blood. I panicked as I was getting the scan done, it seemed I was panicking every where I went.
The tests came back positive, I had Graves Disease. My endocrinologist informed me of the realistic statistics of never ridding myself of this disease. We discussed thyroid removal and Radioactive Iodine Treatment, but I had other ideas.
I hated lining up at 8am for a blood test, the line was so big and my anxiety was crippling. I felt as though I was going to faint every minute. Was it the idea of blood tests or was it the disease? I didn’t know any more, it felt like a vicious cycle. My blood results would come back week after week and were slowly improving. There were a number of tests I’d always have done with thyroid disease, T3, T4 and TSH (thyroid stimulating hormone). These number have a small range and to be classified ‘normal’ they all must line up. Mine were far from normal but I persisted.
I started doing research learning as much about they thyroid gland and auto immune diseases. I was struggling with the mental condition I was experiencing so enrolled in a course, Psychiatry and Mental Illness at Sydney University, I had already completed a Health and Nutrition Course through Vanderbuilt University so understood the importance and consequences of a healthy, balanced diet. I practiced mindfulness and meditated each night before going to bed. I felt that it was important to continue on with my usual routine and life as much as I physically could and not lay down to the disease. This was critical for my mental health. I am part of an online acting community group so i kept involved with the group and this some what kept me sane. The support was incredible.
I was always one of those people who chose the salad over the chips or the fruit salad over the cake so I classed myself as a healthy person. I walked a lot and have always been the same weight my entire life. The only change was just before the thyroid storm when I jumped from 52 kilos to 59, then dropped back down to 50 within three weeks.
It was time to really focus on becoming clean in every way, from food to hygiene including cosmetics, body and hair care, cleaning products and anything I came into contact with. I switched to a very green diet, lots of natural proteins and smoothies. I changed all of my makeup to clean, green products as well as my deodorants, perfumes, toothpaste etc.
I’d been travelling along just fine for 6 months but started to feel sluggish again and the dizziness was persisting like it used to. I kept popping my pills as prescribed and going as green as I could. My heart kept jumping so I started to record the levels and they were frightening. My resting heart rate was down to 50-55, no wonder I was feeling tired. I decided to stop taking the beta blocker heart medication which was slowing my heart rate down. After I measured 49 bpm I knew I had to stop before my heart did. I kept taking the thyroid medication and the next week had a blood test scheduled.
I was working in retail and was on a solo shift for a few hours. I could barely keep my eyes open and kept feeling the urge to pass out. I kept telling myself it’s just part of the symptoms and it will pass. I told one of the customers I didn’t feel well and she said I looked grey and pale. I walked home even though I felt bad as I was determined not to stop exercising just because I was sick. I was home for five minutes when a local heart specialist called me. He first asked where I was and if I was ok? I told him I wasn’t feeling good and he responded “It doesn’t surprise me”! This doctor had accidentally received a copy of my latest bloods which had gone to my endocrinologist and local doctors. He did a courtesy call to make sure I receive the results as they were bad. I was overdosing on the thyroid medication and had swung dangerously the wrong way which is why I was passing out. i was taken off my three tablets twice a day and was back down to one tablet. I felt a drastic improvement within two days. What would have happened if I didn’t stop the Beta Blockers?
The next 8 months I struggled to come out of the over dosed levels and back to normal. I monitored my levels closely and got blood tests every two weeks at my own request. Waiting in pathology made my anxiety worse each time, you’d think I’d have gotten used to it. I was always fearful of getting those results.
In December 2017 my levels were bouncing back and forth within the healthy ranges, although I didn’t feel healthy. I discussed going off meds with the doctor and he agreed to trial it but said it would more than likely fail. I have now been in remission for one year and seven months. I have no antibodies in my system, it appears I have been cured. I don’t feel cured or normal by any means but I have over come the hurdle of having graves disease. I have no idea how or why I got it. I have no family history, i didn’t think I got a virus although I had a terrible cough for a while and did work in hospitality, so it comes back to environment and lifestyle. I used to smoke and drink probably like most people growing up. I have always eaten a healthy diet and exercised moderately. I have been through some very stressful experiences and have experienced great family loss. Could the grieving have caused a disease? It is possible. I will never know, so I now continue of my plight to continue my journey back to optimal health.