I think we all know by now that I do not shy away from talking about issues that I feel important to me. As someone who has learned to live with such a complex illness, I thought I’d share my experience.
According to the NICE guidelines, thyroid disease is extremely prevalent with approximately 0.2 – 5% of people in the UK living with either forms of thyroid disease affecting more women than men.
The British Thyroid Foundation defines the function of the thyroid as an organ which “regulates the speed with which your body cells work and and “influences the activity of all the cells and tissues of your body.”
Hypothyroidism or an underactive thyroid is when the thyroid gland does not make enough of the hormones required for your cells to perform optimally. Symptoms can be: tiredness, feeling cold, weight gain, poor concentration, depression.
An overactive thyroid gland, otherwise known as Hyperthyroidism, occurs when the thyroid produces too much thyroid hormone. This can be caused by Graves’ disease and other illnesses. Symptoms can be : weight loss, heat intolerance, anxiety, and, sometimes, sore and gritty eyes.
Graves’ Disease (Hyper-thyroidism)
July 2016
Three months into my Bulimia recovery, graduation was round the corner. I started to develop severe pain in both eyes…the sensation similar to when a piece of sand gets into your eye, a gritty feeling if you will. But there was no sand in my eyes, and no matter how many times I washed my them, the pain persisted. I ignored that because I thought maybe I had stared too hard at my computer screen or maybe it was stress as I had just submitted my thesis. The symptom came and went so I continued with my eating disorder recovery and ignored the eye pain.
“My eyes would not close when I’d sleep so my family would often find them half open…”
February 2017
I began to lose a lot of weight in a short space of time and I felt like I constantly needed the loo. I mean several times a day, often inconveniently timed too! I also felt extremely sweaty all the time, my hair was falling out and I felt hungry all the time – I never felt satiated. I thought it was part of my ED recovery as I had not felt true hunger in years and was getting used to hunger cues.
I contacted my GP who was extremely proactive and requested some blood/allergy tests for me to do. They all came back clear. She then saw me in person and checked my pulse… it was 120bpm at resting! I was shocked to say the least. I had not stopped to notice just how tired and out of breath I had become over the last few months. But it made sense as my heart was working harder to pump blood around my body. I had just started studying for my master’s degree and thought that the commute to the university campus had tired me out. However, this was a different kind of tired. I felt like no matter what I did, I could not relax and I did not feel rested after sleeping.
“…my endocrinology consultant educated me… I felt like I could gain back some control…”
This time my GP ordered some thyroid tests and a scan of my thyroid gland. My results came back a couple of days later along with an urgent appointment with my GP.
“You have Graves’ disease“…
April 2017
Over the months that followed the symptoms began to get worse.
I also developed Thyroid Eye Disease – My eyes started bulging, I had to consistently use eye drops as my eyes became extremely dry, my eyelids would often swell and I had to try and cover it up with dramatic eyeliner or wearing glasses. My eyes would not close when I’d sleep so my family would often find them half open – which I can only imagine was very unsettling! I felt extremely self-conscious and found myself having to explain why my eyes had changed.
It was a difficult period of time as I felt like I was constantly playing catch up with my body and all the changes it was going through. I went from gaining weight during my ED recovery, to losing it all and then gaining it all back and some more. I had to constantly change my wardrobe to find clothes that fit me better but were still modest.
I was started off with a small dose of Carbimazole which was used to help bring my thyroid levels back to normal. The dose was adjusted every 6 weeks following a blood test. I wasn’t very good at taking my medication. I was frustrated and angry. I felt like I always had something wrong with me. I felt like I was too young to deal with such health conditions. But my endocrinology consultant was amazing and educated me about things like ‘Leaky gut syndrome’ and the importance of fitness and stress-reduction on health outcomes. So I felt like I could gain back some control of my health.
This journey continued till 2019 which is when I was finally weaned off the medication.
July 2020
A year later, the pandemic hit and I began to gain a lot of weight. I know that most people could relate to this, but this was whilst I was engaging in exercise in my local park. I completed the couch to 5K course (recommended by the way) and felt like I was still looking after my health and fitness even though gyms had closed down. I was working harder yet nothing was working. The weight just continued to go up and up and up. I knew something was wrong because this kind of weight gain was uncontrollable.
Sadly, my old (amazing) GP retired and I was faced with trying to explain the new symptoms I was experiencing to a very different GP. He reluctantly requested a blood test and my thyroid hormones appeared to be slightly elevated, but not enough for them to be treated. This frustrated me but I persisted with trying to lose the weight I gained and exercising.
The interactions with my GP went something like this:
GP : “Well if you’re gaining so much weight you must be pregnant!”
Me : “I’m not pregnant”… but thanks for highlighting that.
GP : “Well, you should go on a calorie deficit” *continued to lecture me about my BMI was too high and I was overweight*.
Me : ” I workout regularly, do my daily steps and have been in a caloric deficit for months yet nothing is working. Given my history of Graves’ Disease and that one of my thyroid hormones (TSH) is slightly elevated, can you refer me to a specialist?”
GP : ” Your levels are slightly out of normal, but they aren’t high enough to warrant a referral to a specialist”
Me : *trying hard not to scream*
Such interactions continued and I continued to become more and more frustrated with the NHS. I was frustrated for the following reasons:
- I was made to believe that my symptoms weren’t as important to be treated
- I felt awful because I was consistently tired, experienced persistent low mood and anxiety
- The fact that my GP was waiting for things to get worse before treating me
Hypo-thyroidism
August 2022
I had gained a lot more weight and I started to think I was going to be this big forever. I did not feel like myself. It wasnt just the weight gain that had affected me. I felt extremely cold and miserable , not the best combination of symptoms to have, particularly in the winter. I also felt depressed as I did not feel like myself. I felt tired all the time and not just a “I didn’t get enough sleep” kind of tired; I felt exhausted and fatigued. Like every cell of my body was shutting down. I would sleep 8-10 hours and still wake up feeling like I needed more rest. My periods started becoming more irregular.
I had enough.
I asked to see another GP and by then my TSH (thyroid stimulating hormone) was higher indicating hypothyroidism, or an underactive thyroid; the opposite to what I was diagnosed with in 2017.
Finally.
The Present
August 2023
So that takes me to today. A year into treatment. I take medication called Levothyroxine (thyroxine) daily on an empty stomach and have been doing so since I saw my GP last year. I have also learned just how common thyroid disorders are; I have several friends that are also diagnosed with an underactive thyroid and have since been treated with thyroxine accordingly.
It’s been an emotional journey as I experienced so many different symptoms over the last 7 years. The worse was the impact that Graves’ disease had on my eyes. I could deal with the weight fluctuations but having something impact your eyes, which is a very visible part of your face, made me feel extremely self-conscious. I’d often find myself avoiding public spaces and feeling distraught as I would wake up to a different set of symptoms everyday.
The weight fluctuations occurred suddenly which led to further questions and concerns. This is something that I was used to since recovering from Bulimia. But what I found hurtful was the unsolicited advice I received about losing weight. I found it exhausting having to justify why I couldn’t lose weight despite trying to and found myself angry at the stupid assumptions people made of my weight gain. “Is she pregnant?” “Hasn’t Laraib gained weight?” “You should walk more”. I would overhear relatives asking my mother. I’ll save the p word for another blog post…
I am always fearful of relapsing and experiencing symptoms of Graves’ disease again. I was informed that I would likely have to have my entire thyroid gland removed if this happened.
Furthermore, I found that many known celebrities also struggled with Graves’ and other thyroid disorders such as Maggie Smith and Missy Elliot. But to this day, there isn’t enough information or anybody speaking about it. Contrary to popular belief, hypothyroidism isn’t an illness for fat people and having Graves’ disease isn’t great because you lose weight. There is so much to it and frankly, seeing these illnesses with a lack of understanding is extremely disrespectful but renders our personal experiences obsolete.
I felt like I learned more through Reddit and close friends than dated YouTube videos and leaflets given to me by my GP. It’s very common but not openly spoken about. I started my journey with thyroid disease feeling extremely distraught, but after years of experiencing the yoyoing of thyroid hormones (experiencing both hypo and hyperthyroidism) and discussing it with people from all walks of life, I feel empowered with further understanding of the illness and a willingness to share my experience to stop people feeling so alone. It can be an extremely isolating illness.
I find it a blessing in disguise as by being diagnosed, I have become a lot more in touch with my body. I know that if I increasingly feel the need to rely on mid-afternoon naps to function, feeling cold and find myself experiencing low mood (without cause), I should request a blood test. Of course there are other health issues and deficiencies that mimic such symptoms, so it always worth avoiding a Google self-diagnosis and booking in for a routine check up with your GP and request a thyroid function test.
The most important thing I learned is that no-one knows your body more than yourself. No health professional can tell you otherwise. If something feels wrong then you should push for further investigation.
Thyroid Hacking tips
- Consider talking therapy to help you get through the symptoms as it can have a huge impact on your mental health
- Practice mindfullness – stress makes your symptoms worse
- Research the impact food has on your gut and its impact on the thyroid
- Exercise to keep your energy levels high
- Be in regular contact with your health provider or see an endocrinologist referral as they have more of an understanding of specific conditions like thyroid disorders
- Speak to family, friends and colleagues about what you are experiencing – it’s an invisible illness which means you will need to let people know about the symptoms you experience and how it can impact you at work or at home
- Take supplements to help with energy levels
Here are some useful links to learn more about thyroid illness:
https://www.nhs.uk/conditions/overactive-thyroid-hyperthyroidism/causes/
https://www.nhs.uk/conditions/underactive-thyroid-hypothyroidism/
