At the age of 7 I was diagnosed with primary autoimmune Hypothyroidism which slowed down my brain and body function. It was so severe that I had stopped growing, and had the body density of a 4 year old at age 7. I just about reached the shoulders of my friends that were the same age as me, and I was bullied at my school because I was so small. The teachers did not understand either, and I was frequently told off for being so slow. I was placed onto mainstream thyroid medication (T4) and this restored normal growth but many hypothyroid symptoms remained (fatigue, difficulty to concentrate, brain fogginess). My mother and I had discussed our concerns about these symptoms to many endocrinologists, however they all dismissed the idea that it was related to my thyroid.
At the age of 10, I had developed a new form of postprandial hyperinsulinaemic hypoglycaemia which caused me to suffer from severe daily hypoglycaemia (low blood sugar) episodes day and night, that would almost always end up causing grand mal (unconsciousness, foaming at the mouth, muscle contractions) seizures. To prevent such episodes, I had to consume large amounts of glucose every 2 hours – my pancreas was producing 50 x more insulin than normal. This had caused a major delay in my education as I was either in hospital because of a seizure, or I was advised not to come into school because staff did not know how to support me with my rare condition. By this point, I had seen at least 8 endocrinologists who had repeatedly misdiagnosed me. It was only until I had attended a fasting at Great Ormond Street Hospital (GOSH), where I was diagnosed with a form of Hyperinsulinism.
At age 13, my Hyperinsulinism reversed into Type 1 Diabetes. My doctor at GOSH was in great disbelief, as this had never been heard of before and was even published medically to make other doctors aware. I am told that I am the first case in the world to reverse from Hyperinsulinsm to insulin dependence – not insulin resistance which would be Type 2 Diabetes. Although becoming insulin dependent is a much less frightening experience as it was with Hyperinsulinism, I am still prone to having grand mal seizures during a hypoglycaemic episode and it does affect me on a daily basis such as tiredness and impaired cognitive function depending on what my blood sugar is and whether there have been any erratic fluctuations. Blood sugar levels can be affected whether you are ill, stressed, upset, concentrating, exercising, and the weather can also make a significant difference. I was also unable to complete my GCSEs or A-levels due to a sudden change in diagnosis and I still have to consume large amounts of glucose. I am frequently going through 2 bottles of normal Coke and several bottles of Hypostop/Glucogel per episode and sometimes I have to ask strangers for help.
In 2013, I was the first person in the UK to be tested positive for a genetic mutation that prevents the conversion of T4, one of the thyroid hormones, into T3, the main active thyroid hormone. In ‘normal’ hypothyroid patients, the body is usually able to convert T4 to T3. Thyroid levels are monitored through TSH, T4, and T3 levels via blood tests however it is very common practice for GPs and doctors to only look at the TSH, which can represent an extremely unreliable representation of thyroid levels. When a genetic mutation is present, the lack of conversion is not detectable via blood and therefore undetected by doctors in genetic mutations relating to the thyroid and can easily dismiss symptoms or blames another source for it. I was told that in order to maintain normal cognitive function, I am required to take T3 as well as T4. When I started taking T3, I experienced a tremendously sudden improvement in cognitive functions and this is what helped enable me to get back into education despite not having any GCSE or A level qualifications.
I also have various learning difficulties, such as Dyscalculia and elements of Dyslexia. Dyscalculia means that it is difficult to process mathematics, even in its most basic form and the elements of Dyslexia refers to my working (short-term) memory. Having only been officially diagnosed last year, this was yet another issue that prevented me from getting the help that I needed when I was in education as there was not an understanding. The effects of my chronic health conditions may worsen my symptoms.
This experience has not only helped me understand that many people are left being ignored and/or given the wrong medication, but it has given me the opportunity to understand certain psychological processes from a unique perspective and I will proceed to use that to help others in every way that I can. I am determined that complex health conditions (particularly invisible diseases that are often misunderstood) should not stand in the way of any goal, particularly academic goals. This had led me to become very passionate regarding learning more about the structure and function of the brain (I particularly want to explore functions of T3 and its relationship with brain activity to further understanding and improve diagnosis and treatment of patients with hypothyroidism) as they relate to specific physiological processes and behaviours.
Unfortunately, I was met with shock as I received an email at the end of my first year in university saying that I had been withdrawn from my course. Why did this happen? How? Well, at the very beginning of the year I went to Learning Success and gave all the details of my conditions, the many letters from my various doctors and GP informing how my condition affects me and that I will need adjustments during my studies. Throughout my fairly complicated background which is necessary because the symptoms of each condition can affect my studies, the summary of my condition which would be forwarded to the Psychology department and relevant staff members only very briefly described my symptoms as occasionally getting tired. Despite my best effort to correct this, I was still not given the support that I needed. My requirements, known as reasonable adjustments, was that I could be granted extensions for assignments for when I did not feel well enough. I was not given this and therefore I ‘failed’ the year because I did not achieve sufficient grades to pass the year. Instead of being given the opportunity to resit any exams or even retake the year, I was immediately forced to withdraw from my course.
Over the summer I had received multiple offers from law firms to be represented as this became a clear case of discrimination. When my story came out in the media, a lot of people came up to me telling me that they themselves had been discriminated against. Fighting against City was not just about me anymore, it was about fighting for students who could not stand up for themselves. I represented myself instead as I believed that I had to strength to, and I was given a place back on my course with a letter of apology. Fortunately I have been given the correct support since my place was given back and has been outstanding. But this does not mean that discrimination does not happen to anyone else. The Student Union elections were coming up and I decided to run for Disabled Students’ Officer so that I was able to fight for students with disabilities on a much bigger scale. I won.
I never was able to complete my GCSEs or A levels, and a lot of people think that without those you can’t get into university. Well guess what? I graduated my Access to Higher Education with a Distinction and I got into City, University of London to study Psychology, a subject that I am deeply passionate about, which is ranked 2nd best in London. Did I let the staff members discriminate against me because of my disabilities? No. Why am I writing this? If this at all helps you feel the slightly bit more motivated, that is all that I ever wanted to do. If you ever feel like something is too much for you to handle or that something is out of your reach, do not forget what you strive for in life no matter what it is. Do not forget that you have a voice. Without the downs, there are no ups.
“There is nothing that you can’t accomplish.”
All that’s needed is your hard work and determination. I understand and can completely sympathise that sometimes it can feel too much, or maybe that you’re not sure what you want to do next. If that is the case, then take a moment to think about what makes you the happiest and what makes it all worthwhile for you. Use this time to your best advantage so that you can really reflect on how something has made you feel and why. Often this is the place that you can find where your true passions are and when you think of it, fight for it. Don’t let anybody push you down but if they do, use it as something that just motivates you even more.
“Never give up.”
Written by Lesley Bayly-Bureau