Support Patient stories Natasha Hull - Hyperthyroidism Natasha Hull completed the London Marathon in 2019 after undergoing a total thyroidectomy (removal of thyroid gland) 18 months earlier to treat her Graves’ disease. In her candid blog, Natasha recounts the highs and lows of her journey with what she refers to as her ‘now non-existent thyroid.’Tash’s Marathon 2019 As I awoke to the noise of my alarm, I pushed snooze as fast as I could to get back to that all important sleep as if it were just another normal day. Although this was not another normal day this was Marathon day. Months of training, running in all weathers rain or shine. Trying out new classes to make sure that every muscle had a had a work out. Making sure that not only I could run but I was strong enough to do the distance. As the distances increased, the new aches and pains, and worry if they would last, or if in fact I had done some damage and would not be able to get to the start, also increased. The feeling of being so far away from home on foot with the “what if feeling”. The over analysing of whether I had done enough, was I doing the right training and was I eating the right foods to fuel my running? And the constant pressure of can I really do this. Here is my story in brief to explain how I got to this point. I know we are all different but just maybe someone else may have had the same battles. It all started with my hairdresser telling that she would no longer cut my hair, the day I realised I had collected enough hair to make a voluptuous wig. And the day I went to the doctors and all they did was take my heart rate and before I knew it, I was off for my first blood test. But what I didn’t know was that this would be the first of many, many, many more to come. I don’t know about you but I had no idea we had a pretty little butterfly shaped gland in our throats that had huge control over our very existence. As the months, and then years, went by with the weight gain and the weight loss, the levels of energy fluctuated between non-existent and very low. The mood, and the new emotions – fear, anxiety and depression; all things I had never felt before and now had to try and learn how to deal with them, and this new Tash that was appearing. I was used to feeling fear and anxiety when pushing my boundaries but not when just leaving home for work in the morning. So four years had now passed with the medication’s (carbimazole) levels being adjusted every couple of months to accommodate my thyroid levels, praying that the dose would decrease to zero and I would become normal again. To so much joy my levels had become normal and I no longer had to take those little tiny pills. However this did not last long and before I knew it I was back at the GP picking up my prescription as before. Here we were back to the beginning; starting on the same journey, but this time I now had to consider my future treatment, did I have my thyroid removed or did I undergo the radioiodine which was far less invasive although this was not so straight forward as I had been suffering from Graves’ disease. That feeling of looking in the mirror and not recognising your own face, my eyes had changed shape so dramatically and not even recognising the person within. I had always been a very active person, enjoying the outdoors and exploring. My main passion was scuba diving, and I used to do some quite deep technical dives. This was all a thing of the past as the fear and anxiety had taken over and now I was too scared to get in the water I had lost doing what I loved the most. My current level of activity was back and forth to the sofa for a cuppa or a dry tissue, and even at times this felt like too much. Oh and just to clarify, I had never done any running at this point. My mind was made up: I just wanted this thing to be out of my body, and eventually my levels were right to get me booked in and under the knife. The fear on the run up was immense; in fact in describable. Not only was I dealing with that but also trying to understand which feelings were real and which were being driven by the thyroid. I have never felt so scared and alone despite having a boyfriend and a loving family. I knew that this had to be done. I had been on a mindfulness course to try and learn how to deal with these new emotions, and as I sat outside the operating theatre, I can truly say it was a massive help. I just focussed on my breathing and all my fears and anxieties were swept away. Up until then, I was so ignorant about anxiety or depression. I can now, hand on my heart ,say that I can sympathise and actually go so far as to say that I have helped some of my friends affected by this. I am now thyroid-less and my new journey begins. I naively thought that once it had been removed, it would have all been a distant memory. However, this is not strictly true, this is where the challenges started. I was determined to get back to being Tash: Tash before she had thyroid issues, fun, outgoing, worry free, adventurous and up for anything. Every day was a new challenge, but I grabbed all of them by the horns and decided to try new ones.Once I was well enough, I really wanted to shift the weight so the obvious one for me was running, as my boyfriend is a runner so why not. I signed up for Park Run and within a couple of months I had shaved minutes off my time and I went from being able to run 100 yards to being able to run 5k. The Park Run community is amazing, everyone was so encouraging, and it gave me something to get out of bed for, otherwise sleep was always at the top of my list if I had any spare time. From here I tried pushing myself and increasing the distances and even entered couple of races. I had one goal and that was to not be last, and I succeeded. One thing led to the next and one day at work my colleagues said the ballot is open for the London Marathon, why don’t we enter. My first thought was it’s like winning the lottery, right? A one in a million chance. By this time, I had run 10k so thought well why not I won’t get a place and I didn’t want to be a party pooper. Your place in the London marathon – yup I got in! The shock, the horror and I was in denial. I got a place! Well best get running. This was a challenge that felt like it had been handed to me by someone ‘up there.’ It did not cross my mind to not do it. It was another challenge and another pair of horns to grab, and what an achievement to say that I had run the London Marathon. The emotions up to the marathon were incredible, I couldn’t talk about the “M” word without shedding a tear or two and I couldn’t tell you why. Praying that I had done enough and I would make it round, I am now fast approaching the start line again unable to explain my feelings I can only say I think I had all of them. Fear, joy, worry, elation, in trepidation and excitement all I had to do was get over the start line and keep running. The crowds are truly amazing and to now finally understand when people say the crowd carries you they certainly do. A boyfriend’s point of view When you think you’re having a tough time and can’t see an end, think of your partner as they are going through change that you can’t understand, comprehend or sympathise with. Is it all really happening? YES IT IS. Supporting someone through anything can be tough and misunderstood sometimes. One person’s idea of support does not necessarily support the other person’s needs. This is something I have learnt the hard way. I haven’t always understood problems associated with thyroid disease. I can’t say I understand it now. But what I have started to learn are the struggles that come with it, not only for the person involved, but their nearest and dearest in close surroundings. The tough times we have been through; we have drifted apart through no fault of our own, but the changes Tash has been through. The anxiety, the nervousness, the depression Tash has been through. It has been such a struggle without being able to prevent it. I, on the other hand, have not changed to accommodate this and understand her troubles. The challenges she has been facing are beyond anything I can comprehend. Tash has set goals which, in my eyes, have given her focus, determination and proof that whatever happens to you, you can fight back. The only problem is I have only seen it now and not whilst I have been pushing her to do some of these things. I know she can do them but have pushed so hard it created issues instead of support. None of this was realised by me until the emotional week leading up to the marathon Tash had chosen to conquer. My lack of support for her led Tash to decide she didn’t want me to be at the marathon to support and help. It was devastating news to me and one that brought me to back down to reality with a big thump. I haven’t been as supportive as I could have been. I haven’t realised all the struggles and strains going on. In fact I hadn’t realised a lot of things: I hadn’t asked. The big day arrived and to my wonderful surprise Tash had asked me to head to London to help. So with an early start on Sunday morning I made my journey to London to support Tash in her biggest challenge yet. I never believed I would be the one stressing so much on a run I wasn’t taking part in. I was trying to make sure I could get myself to so many different places out on the route to give as much encouragement over the run, cheer her on and make sure she knew support was there for her all of the way. The mere 14 miles I covered running backwards and forwards hoping to grab that glimpse of Tash as she ran past was so joyful. Her big smile appeared through the crowd every time. 26.2 miles covered Tash’s longest ever distance run. I’m sure this challenge for her is over but the next challenge is only around the corner. I will be there for her to support her on her next challenge and hopefully every other challenge after that. All I wish is that I understood that thyroid challenge in the first place.