Three Years On...Managing My Graves' Disease
In September 2016, I was diagnosed with Graves’ Disease. This time three years ago, I had been experiencing terrible heart palpitations (my heart was going really fast and strong and skipping beats – very scary) ongoing insomnia, hand shakiness, high anxiety, dizziness and constant bouts of the flu. I had been off work for a couple of days and went to the doctor about my dizziness, heart palpitations and inability to sleep. I had read and was told that heart palpitations are probably just due to stress or too much caffeine. However, after mentioning that I could not exercise without getting really out of breath and pains in my chest, the doctor started to realise that it may have been something more serious. He sent me for multiple blood tests, urine tests, ultrasounds and he ordered me a holter monitor to monitor my heart. I thought that I was probably just stressed from my job and had caught a virus. I was never expecting that there was anything serious that was actually wrong. I had never had any majorly concerning health problems and had been health conscious for quite some time. I was hoping that these symptoms were going to go away in a couple of days.
The Diagnosis…
I went back to work, but after another few days, I still had all of the symptoms and also felt like I had the flu (I’m also a high school teacher – hello noisey and busy environment – and I was working at a challenging school with very badly behaved teenagers – think screaming, throwing, pushing, swearing, refusal to do work, and just general high energy, draining clientele). So I took the day off to rest and went to simply get a doctors certificate to justify my absence. However, the new doctor who saw me said that my recent test results were already back, so she opened them and said “Oohhh…hmmmm. You’ve got hyperthyroidism and your levels are so high that it looks like its probably even Grave’s Disease”. She made a few phone calls to confirm and then very bluntly told me that I would have this disease forever and I could soon have heart failure, so I needed to start medication as soon as possible. I could not comprehend what she was saying and still didn’t believe her because I lived a healthy lifestyle and I knew that should mean that I couldn’t have a disease. Only unhealthy people got diseases, right? She sent me off with a prescription for two different types of medication – one to slow my thyroid down and one to slow my heart down. I went home with a bag full of pills and started crying to my housemate.
A very morbid sounding disease…
After the initial shock and phone calls to my parents, where they immediately heard “Graves’ Disease” and thought it must have been a death sentence, I started to do some research. Firstly, I found out that Doctor Graves was the man who first discovered the disease, and that was why it was given its ominous name. I also found out that Graves Disease is a chronic autoimmune disease, where the immune system disfunctions and begins attacking the body, in my case, my thyroid gland (a small butterfly shaped organ in the front of your throat – I thought it was in your thigh, naturally…), causing it to enlarge and become overactive, or "hyperthyroid". Graves is also an endocrine/hormonal disease, as the thyroid controls the hormonal system and pretty much every function in your body (hard to believe I knew nothing about such a powerful organ)!
The thyroid is the pace maker of the body, so an overactive thyroid means everything goes into speed overload. A couple of days after being diagnosed, I was set up with the holter monitor, where I had to wear cords and sticky pads all over my chest and stomach for 24 hours to monitor my heart. This revealed that my resting heart rate was about 100 and was reaching an average human’s maximum heart rate of 200, just by simply walking on the beach. Having everything in my body going fast explained why I had terrible insomnia, hand shakes, greater than usual anxiety and was always starving (this has been a life-long problem for me though)! The thyroid particularly controls the speed of your metabolism and therefore, usually those with Graves’ Disease lose a lot of weight and a lot of their bone density and strength. I think because of my generous eating habits and strengthening exercises, along with being diagnosed probably pretty early on, I was lucky to not experience these symptoms.
The choice of treatment…
I had already embarked on a course of treatment with the antithyroid medication, but at the next visit to my doctor, he reminded me that there is no cure and I will have this disease forever, so I should think about having radioactive therapy (like a type of chemotherapy), to kill the overactive thyroid off. Alternatively, I could get my thyroid cut out, which would result in a rather ominous looking horizontal scar right across my throat. This would effectively give me hypothyroidism (the opposite to hyperthyroidism), so I would have to take another drug for the rest of my life to recreate the function of the destroyed thyroid. Hypothyroidism has a host of other problems associated with it. Not to mention the fact that removing the thyroid doesn't do anything to address the underlying immune system problems and hormonal imbalances in the first place. I immediately knew I did not want to destroy a major vital organ, and as much as I hated the idea of taking 14 tablets every day at the age of 23, I decided that I preferred this over the other alternatives.
Getting to the root cause…
I went straight to a local naturopath that I had visited once before for a rash-like skin condition I had randomly started getting on my chin the year before (I now have a feeling this was a warning sign because any skin problems in the chin region indicate hormonal imbalance, and skin problems in general usually indicate immune system/gut health problems). She immediately told me to stop eating gluten as “in those with autoimmune thyroid disease, every time they eat gluten the immune system sends out antibodies to detect and destroy the gluten, but since the gluten and thyroid gland look so similar, some of those immune cells end up attacking the thyroid by mistake”. You can read more about gluten and autoimmune disease here: https://www.amymyersmd.com/2017/02/3-important-reasons-give-gluten-autoimmune-disease/. She also told me to avoid soy products and told me that my gut was very, very inflamed. In her words, she said “your gut is on fire”. She explained that the medication will ease my symptoms for a while, but if I don’t treat the root cause (an angry immune system/gut), then I will never be able to properly heal. Her and my doctor both told me that lowering my stress levels was one of the most effective things I could do to help heal the disease. If I continued putting myself under constant stress, it was likely that I would develop a second and maybe even a third autoimmune disease (this could be type 1 diabetes, lupus, crohns disease etc.). They also mentioned that stress is likely what triggered my disease in the first place. If I was able to reduce stress and alter my diet, this would help to heal my gut (which contains most of our immune system), which would settle my immune system, which would stop attacking my thyroid and my thyroid would stop giving me insomnia, heart palpitations, anxiety, dizziness etc.
Healing my gut and balancing my hormones to reverse the disease and avoid developing others…
So this is still a work in progress and it does take some time, however, I have made some small changes to my lifestyle that have had big impacts on my health.
I reduced my stress… I left my permanent, full-time teaching job at the behaviourally challenging high school and started working casually. This took away pressures such as planning, reporting and marking, not to mention the constant adrenaline and stress hormones that were pumping every lesson of every day!
I started hobbies! Leaving my full-time job, meant I had more time to do relaxing, enjoyable hobbies, which also helped to lower my stress levels. I started pottery, recipe creating, styling and photography and I joined sports teams.
I went au naturel… From what I put on my skin each day to what I cleaned my house with, I made sure I significantly cut the amount of toxic chemicals that I was exposed to.
Skincare: I realised that every morning I had been covering my body’s largest organ (my skin) in chemical-ridden moisturisers that were full of ingredients I could not pronounce and certainly would never put into my body through my mouth. I realised that every morning I was also spraying deodorant full of aluminium and other harmful, artificial ingredients onto the delicate glands under my arms, not to mention how much of it entered my body through breathing it in! In my younger years, I even sometimes used fake tan and toxic nail polish, two things I can’t even go near anymore, simply because the smell of them is a huge warning that they’re completely chemical ridden. There is so much research out there now explaining how far removed we humans are from our natural environment. Of course these man-made, toxic products are going to damage our bodies and lead to things like autoimmune diseases and cancer. The toxins damage our intestinal walls, leading to leaky gut and allowing all of these chemicals and toxic waste to enter our blood stream!
I now use coconut oil and a hot wash cloth to remove my makeup, rather than the store bought face wipes full of harmful chemicals, I also use coconut oil as my all over body moisturiser. I use diluted apple cider vinegar as a face toner if I get breakouts (which I haven't had in ages). I use a natural deodorant from Corrynne’s Soaps that works amazingly and is full of ingredients I know and recognise. I use Weleda’s moisturisers and oils for the sensitive skin on my face, I use Nude by Nature’s mineral powers (which I have used for some time, but I used to put Maybelline liquid foundation underneath (?!). The powder is all you need – trust me!), and I use only natural bars of soap.
Cleaning: I completely got rid of all regular cleaning products and laundry detergents, and simply invested in natural ones. I often use vinegar and bi-carb soda to clean the house and buy an inexpensive brand that is sold at all major supermarkets, called Earth’s Choice. Typical cleaning products are scary. You breathe them in while you’re cleaning and even afterwards, just living in your house. Your clothes rub against your skin all day and any chemicals they’ve been washed with are going to be going straight into your body through your pores.
Plastic: Plastic water bottles were the first thing I removed. Plastic is not a natural product that existed on this earth before modern humans, and like many artificial things, that means it is not something that should exist now. Particularly when it is exposed to heat - this causes the plastic to leach its chemicals into the water that you’re drinking that is supposedly keeping you ‘healthy’. I now use glass or metal water bottles. The same goes for plastic containers. If I have to use them, I will ensure the food I am putting in is cold first and I will never heat anything in a plastic container, I will simply take it out and put it on a ceramic plate first. Although, since we moved house we no longer have a microwave so this is not a problem.
Food: In the last 9 months, I have been making an effort to buy food in its most natural form. Where possible, I now buy organic (farmer’s markets are great for this and our local IGA has a great range). We try to eat vegetarian for at least half the week, but if we buy meat it is wild local fish or free range organic chicken. We only very occasionally have red meat and if we do, I buy grass-fed, free-range meat. Consuming the regular, cheap meat from the supermarket means you’re often eating the antibiotics and hormones that have been fed to that animal and if they eat a poor diet of just grain (which is not what they naturally should eat) and have no room to move and exercise, their meat is much higher in saturated fat and much lower in vitamins and minerals. I figure that it is better to have quality over quantity. It is better to just eat less meat and when I do, I make it good quality meat that is not only better for me, but also the animal and the environment. The same goes for any other animal products. I don’t eat much dairy, apart from natural organic yoghurt and occasionally cheese, such as goat’s cheese or halloumi, which is much easier to digest.
If I cannot buy fruit and vegetables that are organic, I try to soak them in filtered water and white vinegar (4 parts water to 1 part vinegar) for 20 minutes to remove as much of the chemical sprays as possible. Obviously, this is not as necessary for foods such as bananas and citrus fruits that have a thick skin that you don't consume. These sprays are terrible for the gut and I very much believe that they contribute to the rise in disease and cancer in our modern world.
I have also started soaking nuts, seeds and grains before I consume them. This is simply to make them more easy to digest. People have been consuming these foods for centuries, and soaking them is the traditional way they always prepared them. However, somewhere along the line, in our fast-paced lives, we've forgotten this important step. Nuts and grains are very harsh on the digestive system if unsoaked, and for someone like me, with an already compromised gut, they are likely to make my autoimmune condition worse if consumed unsoaked. You can do some research yourself if you're interested.
I have also stopped using ‘non-stick’ cookware. Overheating nonstick pans causes their coating to break down, which can result in the release of surface particles and/or toxic gases. It is easier to simply avoid these and use cast iron and stainless steel instead.
The results of these lifestyle changes ONE year on…
Since leaving my full-time job, engaging in more hobbies and relaxation, and reducing my toxic exposure (through natural foods, skincare and cleaning products), my thyroid hormone levels have stayed stable. For the past 6 months, I have not had my hormone levels outside the ‘healthy/normal’ range. Whereas, before, my levels were constantly jumping up and down, going too high or too low, sometimes giving my hypothyroidism symptoms (the opposite to my original diagnosis – depression, constant feeling of sadness, lack of energy, brain fog, slight weight gain). This is no longer the case. I am only taking one tablet per day (as opposed to the original 14) and I do not experience the symptoms I was experiencing before. I still get run down easily and get sick if I have a few late nights, but my immune system/gut is slowly getting stronger and stronger and I know that my food choices and lifestyle changes are at the heart of this improvement. I have always eaten what I thought was a healthy diet, however, I wish I had known earlier how important it was to reduce my stress levels and to avoid foods and household products containing any unnatural ingredients/chemicals. Autoimmune diseases are on the rise, and my research tells me that this is due to the fast-paced, stressful lives we're leading and the unnatural, chemical-filled lifestyle of modern times. If you do not have an autoimmune disease, please try to reduce your exposure to chemicals and stress as much as possible, as this will lessen your possibility of developing one. If you are already suffering from one, this is even more vital for you, as it is likely to reduce your symptoms and hopefully, over time, it will heal you.
How I'm managing THREE years on…
I happily came off medicated in March last year and my thyroid stabilised for 14 months. In this time I was able to backpack around Europe for three months straight, with not a problem in the world - it was glorious! However, I got back from my overseas trip to see friend's buying homes or progressing in their careers and I started to feel like it was time for me to take my career and adult life further again. I had been healthy for some time and thought I must have been up to it. However, I knew I had to take it somewhat easy, as I knew I was at risk of relapse. I applied for two 4-day-per-week positions at the school I had been enjoying working at casually. I did not initially get the positions, but I was ranked second in-line behind two very experienced teachers who ended up receiving them. Nonetheless, a new position popped up and because I was ranked second in-line, this job was automatically given to me. I was both very happy and also a little concerned at the same time. I knew I didn't want to work full-time, but this was a stable job that was handed to me. I convinced myself that because it was a nicer school, this might mean that my health will be able to withstand the demands of full-time work. I took it on feeling both grateful and also a little wary.
The year started in a very stressful manner for me. The October before (when I arrived back from overseas), my old boss had told me that he could no longer hold my permanent position for me. I either had to return to my position, or resign. Knowing full well that the stress of that position is what initially triggered my illness, and also considering that we now lived a 3 hour drive south, I eventually decided to resign. Now, the government school system being the way that it is, told me that I had to completely quit teaching and then reapply to be a teacher again. So, I resentfully put this paperwork in in October and followed all steps recommended to ensure I would be able to work the following year. Three days before school returned (this is now late January), I received an email informing me that I would not be able to commence work as my approval to teach had not been approved. Whhaaatt?? I tried to call the Department of Education, but it was already past opening hours on a Friday afternoon before a long weekend. I then had four very sleepless nights, stressing about what I was going to do and who would teach all of the content I had spent my summer holidays preparing, with nobody to give me any answers. Ling story short, I went into work on the first day, spoke to my principal and called the Department. They told me that one part of my application was an older version of the form and so they could not process the application. Why they didn't tell me this in October I don't know, and even more concerning was the fact that THEY were the ones who gave me that form to fill in?! Anyway, they told me I could not be on the premises with students until it was approved (as if I hadn't already been teaching for 3 years).
Anyway, this stressful start meant I started the year exhausted instead of refreshed. I had gotten into a pattern of not sleeping and was lying awake for hours each night mulling over my new students and their needs, the new content I had to learn before I taught it and the new procedures I had to learn in my new position. It had been a couple of years since I last worked full-time and only my second year working as a full-time high school teacher. Once I finally quietened my mind, I would then wake up every morning at 4am full of adrenaline and stress hormones, mind swirling with thoughts about the day ahead. Inevitably, this meant I was constantly feeling exhausted and run-down and I was constantly getting sick. As predicted, this led to my Graves' Disease flaring up again. Absolutely devastated by the news, I begged my doctor not to put me straight back on medication. I wanted to try herbal tonics, yoga, psychology, massage and breathing exercises first. However, it turned out that it was already too far gone, and I was still buried under piles of marking and reports that weren't going anywhere soon. I realised that I either had to quit this position or just take the medication again. I knew it wasn't financially viable to just quit and it also didn't feel fair on my students or colleagues. I kept pushing through and very resentfully started taking my medication. However, I was still constantly feeling like I had the flu. I was dizzy, fatigued (but wired), had terrible headaches and a constantly aching throat and glands. I eventually built up the courage to speak to my boss about my situation. He was amazing and immediately helped me sort out a way to move to the four days a week that I initially wanted, giving me that one day a week to both do some relaxation and to get on top of my workload, so that I felt less stressed. Well, this seemed like the magic answer. As soon as I moved to part-time work, I was no longer feeling sick. I had 5 glorious weeks of health!
Nonetheless, just last week I was trying to teach my Year 11 class, when I got extremely dizzy and my head started pounding. I told them I had not had a chance to eat my lunch yet, so once I got them working, my students very thoughtfully encouraged me to eat in that lesson. I got myself home and could barely keep my eyes open. The next morning was R U Okay Day at school, run to raise awareness of mental health issues. I had gone and bought a yellow dress just for the occasion (because I didn't own anything yellow and I was excited). However, I woke up and though "I am NOT okay". Since then, I have been battling more terrible aches and pains, dizziness and lethargy. I have pushed myself to keep up with responsibilities, as I am not great at resting. However, today I have literally not moved. I had (tried to) nap, watched a documentary, eaten and now spent time writing in my very dizzy and lethargic state. Today Daniel drove my dizzy, achey self to see my new endocrinologist I first visited six weeks ago, who suggested I have the radioactive iodine treatment to kill my thyroid and then take the synthetic hormones for the rest of my life. In summary, she said it's either that or lots of miscarriages and liver damage if I stay on the medication. However, if I have the radioactive iodine, I have to wait a year before I can have a baby as it will still be in my system. I don't like either option, so have been doing some research and talking to people who've had the treatment.
Just yesterday I decided to start Dr Amy Myer's Autoimmune Protocol. I have already been implementing most of the suggestions Dr Myers makes for the process of healing, such as minimising toxins, reducing stress (this has been a bit harder this year again), avoiding gluten and eating whole foods. However, I have decided to go one step further and follow her healing diet for a month. Now, I have never ever followed a diet. I am a huge advocate for not restricting yourself, but rather enjoying a wholesome, varied diet that you still enjoy. However, this is not THAT kind of diet. This is one where Dr Myers suggests removing all inflammatory, irritating foods for one month, and then slowly reintroducing them. I have mainly been eating vegetarian/vegan for quite some time now, so it did take me a while to come around to this. The diet involves removing all grains, legumes, nuts, seeds, eggs and nightshades (along with the usual gluten, dairy, refined sugar, alcohol and caffeine). That means that all that's left is all other vegetables, fruits, meat and coconut products. I find this to still be a diet I can manage, as I can still fill my plate with vegetables, but what I will miss the most is the meat-free protein sources, such as lentils, beans, eggs, tempeh, quinoa etc. However, I know I can reintroduce these things once I have given my gut and immune system time to calm and heal. Dr Myers had Graves' Disease herself and has treated many patients with her protocol. I have also read about other practitioners who promote a similar approach, such as Dr Izabella Wentz. I am willing to try this if it means not having to permanently remove my thyroid and replace it with synthetic hormones for the rest of my life!! I look forward to keeping you updated with my progress on this once my sickness finally disappears. I believe there is hope beyond the morbid options I have been presented with and I will not stop searching for natural, holistic answers, until I find them!