Imagine having all the energy in the world. Imagine having everything you always wanted. Your own home, an investment home too, a husband, an emerging career, a cat, a car with no finance attached and a couple of good, close friends. Imagine being able to work 3 jobs, sometimes all in one day and still have energy when you get home to pursue hobbies. Imagine being able to eat whatever and however much you liked, without gaining a single kilo. Imagine crashing and burning like a failed rocket launch at a rapid speed and completely and purposefully smashing your life to pieces. This is the story of my Graves Disease.
Things were pretty darn good in my life. I had accomplished a lot in my early 20s including getting married, buying two homes, completing a university degree and adopting the most adorable cat in the world. I had an abundance of energy that never seemed to run out. I literally worked 3 jobs on top of uni and continued to work at least 2 when I began teaching in 2005. I loved to work. I loved the money and the freedom that came with it.
In 2007, my husband and I bought our dream house and sold our original home. It was a dream come true. We were so excited to be moving into our “forever home” and eagerly packed up our things and put them in storage at my grandmother’s house. We temporarily moved in with my father in law and I could probably pin point this as the first time I had felt a little different. I was consistently sleeping for up to 10-12 hours a night and my weight had plummeted from 59kg down to 51kg. I didn’t realise at the time how thin I had become. I was also working full time at this stage, as well as juggling a job in direct sales so it seemed natural to me that I would be fairly exhausted. I would literally get home, eat dinner, have a shower and go to bed.
Once we moved into the new house, I was just as busy as I always had been and loving it. But moving and settling into the house didn’t go as smoothly as I thought. I was becoming more and more aware of something that had been happening for a while, right under my nose but without realising what it really was. I was being name called, put down, ridiculed, the butt of jokes and the recipient of body language that was so very subtle but so very hurtful. Oh my God, was I just being sensitive? Or had this been happening the whole time? Seriously? I would retreat and hide and cry in the shower so that no one could hear me. Then face it all again and again – worse when we were around his friends. My heart would race like i’d run a marathon and my breathing would pick up until I was panting. Then it would skip beats, almost like it had paused just for a second and my whole body would jolt. I was holding fluid in my feet and legs that was so absolutely gross that I was disgusted in myself.
Of course I should have known that I was in an emotionally abusive relationship. I’m an educated woman. But when you’re right in the thick of it, and you have no physical outward battle scars to get your attention, it’s almost impossible to know for sure. It’s like being in a fog. But I was so miserable. I would react with a hundred emotions all at once when something felt unjust or unfair. I was suddenly having a very strong and emotive voice. I could love, fight back with my words, cry, scream and laugh all within one 5 minute argument. Then suddenly, my body wouldn’t cope and my heart would start beating at what felt like a million miles an hour. Heart beating, sweat pouring, breath panting and having irrational thoughts. Was I reacting to being hurt? Or was something really wrong with me?
This didn’t just happen at home though. At work, I’d always been quite a resilient person and got along well with all the teachers and students, but there were changes there too. Some of the staff would look at me strangely, or were they? Did they think I was doing a bad job? Oh God, they think I’m a terrible teacher. I’m annoying them. The kids are whispering and it must be about me. With each little piece of anxiety and panic, came my fast heart beat, sweating, nausea from worry, then often diarrhoea or vomiting as a result; and panting breath, like I’d run a race. Then suddenly, one day after some not very nice text messages from my husband and a few looks from others at school that I’m sure weren’t good, I locked myself in the storeroom of the classroom, lathered in sweat, breathing furiously and ripping my clothes off at a rapid rate. I was being constricted and they were closing in on me. I was trapped in my own body and I couldn’t breathe.
At that moment, the strangest thing happened. My mum turned up at school, in the middle of the day, unannounced. She had never come to my work before. I was a complete mess. Apparently, the bloods I’d had taken a week or so back at the doctor’s had indicated that my thyroid was overactive and that my heart was under a lot of strain as a side effect from it. I was experiencing a thyrotoxic crisis or a ‘thyroid storm’ which is pretty much as bad as it could get and extremely dangerous. She had come with medication for my heart and she made me swallow them straight away. Without medical intervention at this critical point, I was in danger of having heart failure, at 23.
The weeks that followed were some of the hardest and darkest of my life. I had been formally diagnosed with Graves Disease; an autoimmune disease where my own immune system had begun attacking my thyroid gland, causing it to produce too much thyroxine, which is a hormone. As I began my treatment (much to the disgust of my husband, because surely there was nothing really wrong with me – it was all in my head) my symptoms continued to come in waves, unbelievable hormonal highs that would pump me up and cause my heart to beat fast and irregularly; in excess of 120 beats per minute – resting. It would make me sweat and intolerant to any heat. I couldn’t sleep and my hands would shake with an old lady like tremor that I couldn’t stop, despite willing myself to do so. The anxiety that I continued to develop would make me feel so sick I’d have diarrhoea. All of these things made me very moody and irritable all. the. time. Once these symptoms passed I would become bone-chillingly cold and need to rug up and I’d shake. My heart would beat irregularly, but never below 100 beats per minute. These lows would leave me so exhausted I’d need to sleep and rest for up to 15 hours at a time. I became vacant and empty and I preferred to be alone most of the time. My heart tablets were causing me to see all sorts of disturbing things at night, like people who had died, kneeling down beside my bed and watching me sleep. Or dead people walking past the end of my bed and out the door into the hallway. Surprisingly, they didn’t frighten me. I just honestly thought I was losing my mind. I was taken off the heart medication straight away and my doctor confirmed that a small percentage of patients experienced hallucinations while taking that drug.
The thing that surprised me the most, was my inability to feel or show any emotion. After a few weeks of treatment, I wasn’t able to cry, feel upset or anxious in any way. I was able to see everything around me without cloud or fog. Just raw and in black and white. I left my husband some months later. It was hard. But it was right. My heart hadn’t been in it for a long time. The process of losing my house and belongings hurt worse than anything else. It was a long process.
My treatment for Graves Disease lasted 18 months in total and as the months progressed, so did I. During this time I was gaining weight (a little too much actually), feeling less anxious and I fell in love with the most amazing man I’ve ever known. Of course, there were still the odd bouts of symptoms, but nothing that lasted long enough to be too intense. Having Tim’s love, patience and support is what really pulled me through.
This year will mark 8 years since my diagnosis and 6 years in remission, without medication. Yes, I still suffer from some mild symptoms every now and then but I have regular checks. With the exception of a short-lived case of post partum thyroditis after the birth of Amelia, which settled on it’s own after a couple of weeks; I am living in remission of Graves Disease. It has been quite the journey. I hope it’s over.
You can continue to follow my story over on my Facebook Page. I look forward to seeing you there. Tash x
Wow, well done for coming out the other side and look what you have now!
My lovely friend, you are well and truly in a better place on many levels and you so rightly deserve to be.
Here’s to keeping in remission and being happy xx
A very raw account of your journey with the disease, very brave of you. I can’t imagine having all those feelings at once. Your lucky Timmy is there to support you along the way.
Looking forward to seeing more from you.
Wow, wow, wow. You really are an amazing woman. To go through all of this and to come out the other end happy, driven and so positive is testament to what a wonderful woman you are and how fantastic the support you had from Tim was and still is.
Your writing made me feel like I was at your school standing near the storeroom being able to hear and feel your pain.
That is such a touching story! I am finally able to truly understand your hate for sweating. I can also see where the strong, independent woman in you developed from.
Thank you so much for sharing, I hope I can be the support for someone in your situation with this touch of empathy you have provided me.
Kat xoxo
Hi there! Reading from Edmonton, Alberta, Canada! Just wanted to say thanks for sharing your story! I’ve got Graves Disease too and also blog about my journey! it’s people like you who help bring awareness to this unique illness! Wishing you lots of love, happiness and health in 2015!
Hi Rayanne, thank you for your supportive comment. Canada! Wow! I am looking forward to getting in and reading your blog. Wishing you all the light in the world on your journey. Tash x
Thanks for sharing your journey! You didn’t have to have your thyroid removed to find the relief you mentioned? I was recently diagnosed and was told to expect to have mine removed in the coming months. The night terrors you speak of have been haunting me since I started the meds…swore I was just crazy!
Hi Kristen, there has been ongoing talk of my thyroid having to be removed and I believe that if I have another relapse, this will be the likely treatment. The good news about that is that you then have the control over how much thyroxine your body will get 🙂 I wish you all the best. Please keep me updated with your progress. Tash x
Thanks for responding so quickly! I forgot to ask, you were able to have a child with this disease as well, did you have to use a fertility doctor for that? I am currently unable to try due to the effects of the methimazole. Once we remove the thyroid and move to the synthriod we should be good to try again. I had no luck getting pregnant after months of trying, which is when this disease was diagnosed. Everything has been pretty overwhelming the last few months, especially with my newly uncontrollable emotions. Like you, I have always been a rock and could handle anything.
It is such an emotional time Kristen, I know all too well how helpless you feel when things suddenly aren’t in your control anymore. I was able to go on and have a baby. I completed my treatment in 2009 and was off medication when we began trying in 2010. It took 7 months to fall pregnant, but we also didn’t put a lot of pressure on it. It may have been different had I still been on medication and experiencing symptoms. Pregnancy is actually very good for Graves’ Disease. I remember very well my specialist telling me that. All the hormones in the thyroid tend to balance themselves, but it’s after the pregnancy when things try to regulate that makes things go a little haywire – hence the postpartum thyroditis I experienced. Once your surgery is complete and your hormone levels are stable, I’m sure that you’ll be able to try again. Love x
WOW, Almost this entire thing reads like it was written by me. I had a busy active outdoors-job life. Normally a quiet reserved person, I started being bitchy, moody, and having terrible anxiety attacks. My heart would pound and I’d start blacking out. Or I would walk around crying and doing farm chores, for hours. I had no idea what was wrong. I thought I was loosing my mind and also developing heart problems. I couldn’t even stand to be with myself. What a horrible feeling. Then my eyes started to go. I went to the eye doctor, and THEY are the one’s that figured it out. Thankfully I have been doing great on meds, with some minor symptoms that I work around. I was in remission for 2 years, but a year ago we had 3 parents die in a year, and the stress pushed me back over the edge. Working on getting back in remission. The hardest part for me is that no one understands what it’s like when they’re on the outside looking in. No one can imagine what it’s like to be inside this body. Reading your post, I know that YOU know, and share that feeling. It sucks, but knowing what’s wrong and working toward those “good” days is what it’s all about. Here’s to hoping for your continued remission and happiness.
Heather, what a terrible time for you. It really does feel like you’re going crazy and unfortunately there isn’t a lot of knowledge and understanding around the condition so I actually felt like people must have thought I was just a horrible person! Did you have issues with your eyes enlarging/bulging? I was very fortunate not to have it go that far. I too find that stress will bring on symptoms, mainly increased heart rate, sensitivity to heat and heart palpitations. It is so important to me to practice self-care every day and feel that I can control it to some degree when I do so. I wish you all the best on your continuing journey. Thank you for sharing your story with me. Tash x
At first my eyes felt like they were full of sawdust, all the time, even closing my eyes they would hurt. Then the bulging, blurry sight, double vision. Mine isn’t terrible, and I’m just dealing with it for now. With the meds, they are not painful any more.
I do still have anxiety attacks more than I used to, before Graves. I did get some meds for it for when I have to do really stressful things (like get on an airplane, lol). Just so I don’t feel like my heart will explode out of my chest. You know that feeling. Ugh.
In the worst of it, before I was diagnosed, i drove away a ton of people and basically trashed any social life I had. But my feeling is, that if they didn’t care enough to try to understand my new strange bitchy-ness, then I don’t need them. I have a whole new life now, and love it. I realized that life is way too short to put off doing the things you dream of doing. Tomorrow is not promised. I am spending more time working toward my personal dreams, and less time worrying about pleasing others. My own personal mid-life crisis, lol. It sounds like you have the same with your new love. You left behind a life that did not make you happy, you got yourself well, and reinvented a new, happier life. Live it to it’s fullest !!!!
I certainly did Heather. I have the most beautiful group of friends now and am loving life. This is the life I was always meant to live. It must have been all part of the plan 🙂
A very emotive piece. Well done on seeing that light at the end of the tunnel and coming out the other end. You pretty much nailed how I’ve felt for the past 4 years and we have very similar graves’ journeys. 18 months of treatment, in remission for a year, tried for a baby and had my beautiful daughter. But unfortunately my graves disease has returned and I’m due to have a thyroidectomy soon. It’s such a debilitating illness with very little awareness and understanding around the condition Thank you for sharing your story.
Thank you Gina. There is light no matter how distant it seems. You are so right – there is such little awareness about this illness. Here’s hoping to raise some more awareness so that others can understand. Best wishes for your surgery. I’m sure it will make a huge difference to your quality of life. Tash x
This rings very true with me. Thank you for sharing. I feel all the things you did and it’s kinda nice to know it’s normal for people in our shoes. Unfortunately mine hasn’t resolved and I have opted to have a thyroidectomy. I hope my emotions return back to normal soon. Seeing you come out ok on the other side makes me feel more positive.
Thank you Sarah. I truly hope that once your thyroidectomy is completed you will feel back to your normal self. Tash x
That is such a strong tail of your life I’ve also suffered with graves and know how hard it is when you think you are falling apart from the inside out I’m so happy for you that you made it though it thanks for sharing.
Amanda r l burton
Thank you so much for sharing. It felt like I was writing this. I was diagnosed almost a year ago now with Graves, jan 28 of last year. I need to be more patient with my meds working, if I forget to take them my levels go right back up. I’m hoping it’s going to calm down soon, or I will just radiate it. Thank you for the hopeful outcome 🙂
Wow. This is a remarkable story and you’re such a brave woman. Well done for leaving that crappy husband as well! You’re an idol to many and I’m glad you found happiness after all of that pain <3
Thank you for sharing your story. I’ve had graves disease for nearly ten years and its just flared up again. My specialist has always told me that I’ve got a really aggressive graves. I’ve back on meds but they are talking Radiation treatment which i don’t really want. It sounds stupid but I’m only now really reading up on this and actually how serious it is. My biggest thijng is my mood swings and irritability which is not nice for my kids. I always seem to be on edge and i don’t like this part of me but understanding now that its more About the disease than me. I’ve struggled to have more kids which has been really hard too. Thabk for sharing, being honest and open. It’s nice to know I’m not alone
Hi Bec
Thanks for stopping by and leaving your comment. I’m sorry to hear that your Graves has flared again. Since writing this, I have had another baby and am now struggling with a relapse too. I too am suffering from the irritability, which the heat here hasn’t helped! The weight gain for me as also been awful. One area that I’m looking into now is gut health. It’s not really a long shot, but something that I know is likely contributing. Especially the sugar. This is something I need to cut so I can stop feeding it all. Please keep in touch and feel free to contact me privately on my Facebook page should you wish to keep chatting. You’re certainly not alone and it’s great to know that I’m not either xxx
Thank you for all of your stories! I was just diagnosed with graves. I am soo scared I am losing hair , my skin has changed etc. ! Sooo nervous
Hi Kerry, I’m hoping that you are starting to do a little better. It is such a period of change and I think it’s important to stay really connected to your body at this time. Really love on it and nurture it. Much love to you xxx
Hello, I got diagnosed in July with Graves Disease. This has to be the worse thing I have ever experienced and gone through. I have nobody to talk to and the symptoms I go through, I can barely explain to drs because I feel like I dont knkw how I feel. My dr started my on methimazole and propranolol. I am now taking anxiety meds and depression meds as well. I was literally at work today and had to have a co worker call 911. I had this warm sensation go all over my body and I felt like I was dying. I had every test ran and everything came back fine. The ER dr told me that I needed to gwt more tests run for my heart. I have some questions if yall could answer? Have you ever had the warm sensation go through your body? Also, with medicine, my dr recently told me that the medicine is becoming too much for me. She said that my thryoid is getting better but unexpectedly due to the symptoms that I am still having. Does anyone know the next step after this? Also, what is this medicine now doing to my body since my thyroid is getting better even though i do not feel that way. I feel like i am getting worse. I have worked for 11 years at my job. Have 4 beautiful kids and now i feel helpless. I feel like I’m going crazy and I have nobody to talk to because I dont know anyone who is going through this and that’s all I want. I want to know that everything will get better. That I’ll feel better at some point.