What an absolutely amazing, calming, positive, healing word to hear. Anyone who has ever been in remission from ANYTHING can likely agree that it is a birdsong. A second chance. Remission from Graves Disease can take many forms and you may hear many definitions. Sometimes it is when someone has been off of anti-thyroid medications for a particular period of time and has ongoing normal/stable levels. It can also be for people who have had their thyroid removed, shrunk by radiation and where they are able to manage their own thyroid levels through a lifetime of medication.
I still have my thyroid. There had been mention of radiation and surgery at many different times throughout my diagnosis and treatment. I have been in remission for 6 years now and during these six years there has not been a medical reason to interfere with it. But so long as I have my thyroid, it will continue to haunt me. I don’t know when. I don’t know how and I don’t know why. I am hopeful that remission can mean ‘forever’.
I am constantly aware of how my body is responding to my emotions and environment. Just 2 days after I published my original blog about living with Graves’ Disease, I experienced an anxiety attack that lasted 4 hours in the middle of the night and all of my symptoms were my Graves’ Disease symptoms. I wonder if digging back through all of those emotions and symptoms and recounting past events actually pushed me back there, if only temporarily? It was awful.
My original blog has now been viewed over 3000 times, shared by over 200 people (that I know of) and I have been contacted by over 40 people – men and women from all around the world – sharing their stories with me and thanking me for writing my blog. I am so honoured to have had those people reach out and share something so personal with me, a total stranger.
A lot of these people asked how I was managing my remission. How was I able to stay in remission? What’s the secret? Well, I don’t know if there is a secret, but in addition to being aware on a daily basis, I have four things that keep me in check.
Graves Disease is a condition that not many people know about. It’s not a condition that people talk about a lot and I feel that there is a lot of ignorance when it comes down to the seriousness of the condition. As you may have read in my previous blog about living with Graves Disease, my ex husband just didn’t want to know about it. He honestly thought that the whole thing was in my head and that I was simply just being a bitch with my mood swings and a hypochondriac when it came to my other symptoms. Perhaps he felt that if he didn’t learn more about it and actually understand it, then he wouldn’t have to deal with it.
Educating ourselves, our loved ones and our friends about Graves Disease is the best possible way to move forward and progress through treatment or manage remission. Education is the most powerful tool in the world and it can make a huge difference to managing the condition. We all need support. Educating ourselves and our loved ones is the best way to ensure that we have the right people with us on your journey. Trust me, having Graves’ Disease is the quickest way of working out who your real friends really are.
I absolutely LOVE my endocrinologist. Although I have to travel to the Gold Coast to see him, he is worth every kilometre I drive. I also love my GP. Without his clever and quick thinking, my Graves’ Disease may not have been revealed until much later, which could have caused a multitude of problems for me or even been fatal.
But at the end of the day my specialist is a SPECIALIST. After all, he SPECIALISES in my condition and knows all the latest facts and findings on all things Graves’ Disease.
When Amelia was around 14 weeks old. I went to see my GP as I was certain that I was in the early stages of relapsing. My heart was beginning to beat very fast & erratically again, I was sensitive to heat, extremely irritable and very short tempered. As a new mum, it was a very emotional time. My hormones were going crazy and it was hard to tell what was maternal and what was being driven by my thyroid. My GP ran tests and my levels were through the roof. He wrote me a script for neomercazole, the drug I had been on 3 years beforehand and left me utterly devastated and uncontrollably emotional when he said that I would have to stop breastfeeding. This upset me more than the news of a relapse had. It had taken me the whole 14 weeks of her life to get the hang of breastfeeding and I absolutely loved it - as did Amelia. I think I cried for about 24 hours straight and breastfed her every opportunity I could. As I became more and more emotional, my Graves Disease symptoms worsened as well.
My partner encouraged me to pump as much milk as I could so that we could store it and continue to give it to her through a bottle for as long as the supply lasted. I spent days pumping and in order to get more, we began to give her one bottle of formula a day, just to get her used to it because she was going to have to have it soon anyway.
I was totally crushed and couldn’t give her that bottle. I would leave and go and pump somewhere where I couldn’t see her. Although there is absolutely nothing wrong with giving a baby formula, I was just devastated because I WAS lucky enough to be able to feed her myself, but wouldn’t be able to soon.
After about a week, I still hadn’t filled the prescription for the neomercazole. I didn’t want it, despite my symptoms coming back full throttle. I made a decision. I refused to begin the medication until I had seen the specialist. It turned out to be the best decision I’ve ever made.
My specialist was on annual leave (of course). I had to wait 4-5 weeks to see him and in this time I continued to feed Amelia myself and also pump and store as much milk as I could. Each day that passed was a day closer to seeing the specialist, but also a day closer to having to stop breastfeeding. It was such an emotional roller coaster.
My symptoms varied throughout these weeks. I’d have absolutely beautiful days with no symptoms; and I’d also have some horrid days, where my body would be so out of control, I didn’t know how I was going to care for Amelia on my own. On some of those days I would feel anxious about being alone with her in case she cried and I couldn’t cope on my own. So I’d often try to find someone to do something with just so I could have that moral support. As the weeks continued, the bad days became fewer and fewer.
A few days before I saw my specialist, I had more bloods done but wouldn’t have the results until the day of my consultation. Here’s how it all turned out.
I was NOT having a relapse of Graves Disease. What? Apparently, what I was experiencing was a Postpartum Thyroiditis. Very common among Graves Disease patients due to the stir in hormone activity following birth. My levels were on the decrease and he had no doubt that within another week or so, I would be back to normal. Which I was.
Even if I HAD been experiencing a relapse and had to take my medication again, it would have been perfectly safe for me to continue breastfeeding. Interesting. Although it came straight from the horse’s mouth, I still checked up by contacting Mother Safe. Mother Safe is one of the BEST organisations around for new mums with medical issues and is rarely referred to by doctors and therefore is very underused. If you are needing to take ANY medication while breastfeeding, call these people. They can tell you exactly what you need to know about whether or not a particular drug is safe to take during breastfeeding and pregnancy.
So as it turns out, I was not having a relapse of Graves Disease nor did I require any treatment. I was back to normal within another week or so and I continued to breastfeed Amelia until she was 14 months old.
I am well aware that I am the barometer of my family. My mood, my outlook, my emotions, my enthusiasm and my EVERYTHING are mirrored back to me through my family. Taking care of me first, is the most important thing that I can do. When I am well, all is well. This is particularly important in managing my symptoms of Graves Disease. Even though I’ve been in remission for 6 years, I still notice spikes in my symptoms. Often they are random, isolated recurrences that can lead me back into moments of complete turmoil within my body.
I'm still a very anxious person. I still have feelings of anxiety in the workplace where I take every comment, lack of comment, criticism and look as an attack on my ability and performance. I get anxious if I’m staying at someone else’s house. I can have anxiety attacks in the middle of the night when I am worrying about something coming up the next day or something I’ve forgotten. I have found that keeping my mind and body as calm as possible is the only way to manage this.
My self care routine includes:
Limiting my caffeine intake is something that I’m aware of all the time and by purposefully having little to no caffeine each day, I find that my heart rate stays nice and low and as a result I’m calm and not irritable. About 6 months ago I went back to my GP begging for him to run some bloods because I was certain I was having a relapse. All the usual signs and symptoms were showing up again – increased heart rate, palpitations, sweatiness and intolerant to the heat, anxiety, insomnia and to cap it all off I nearly punched a lady out because she was taking her time at the checkout and having a long, unnecessary conversation with the sales lady. I was so impatient and angry at that moment. I knew it wasn’t normal. My mother however knew exactly what was going on and got the giggles before erupting into full blown laughter. She’s a health professional, so she most certainly wasn’t laughing out of ignorance, but if she weren’t there then maybe I may have had a go at the poor lady.
As it turns out, my blood work came back fine and after asking some questions about my diet that week, my GP actually established that it was the 2 strong black coffees I’d had at school each day that week that had sent me into a nasty spiral. My doctor’s good sense of humour played through here as my medical file now reads – “aggressive bitch.” This amuses me very much! I’m not allowed to have coffee at school anymore!
Being consciously aware of your condition on a daily basis, recognising your triggers and having a few things that you can do to manage them can make a lot of difference to your quality of life. Thank you for reading my story about my journey with Graves’ Disease.