Read about my personal experiences in detail in my book.
How Did I Become a Leading Thyroid Patient Advocate?
From feeling like I was dying to finally thriving again.
I first had symptoms of Hypothyroidism/Hashimoto’s at just sixteen years old.
People labelled me ‘lazy’ for lack of energy and stamina and I always felt cold. Symptoms only increased in numbers after experiencing swine flu, also at sixteen.
Even after I had recovered from this, I continued to go through bouts of feeling very tired all the time, having achy legs and poor stamina. I also started to become ill a lot more often.
At eighteen, I contracted another strain of flu which developed in to pneumonia, which resulted in 80% of my hair falling out. Unfortunately, the pneumonia was so severe in my case that I was admitted to intensive care and put on life support for three weeks. Following this, I was also left anaemic.
I also started having recurring, strong bouts of depression and anxiety from this eighteen years old. I was on-off anaemic for a few years and never felt fully well again; feeling tired and achy and having other random symptoms such as leg cramps, migraines and irregular periods mount up, but with no explanation from doctors.
Because I was ‘only borderline’, I was left with no thyroid medication for a while longer, which led to me becoming more unwell, and then I was eventually started on thyroid medication in the Summer of 2015, at twenty-one years old. It frustrated me that doctors had missed it for so many years and they never once suggested or tested me for it until now. Especially as I was constantly complaining of many symptoms of it and had recurring poor mental health episodes, which often come hand in hand with it.
All the signs were there but it was missed.
When I was finally prescribed medication, I was put on Levothyroxine, which I was truly hopeful about working.
However, Levothyroxine sadly didn’t work for me. Days, weeks and months passed by where I was only feeling feeling worse and worse the longer I was on it. For a brief two weeks I felt better, amazing actually, and then I plummeted back down to feeling worse than I’d ever been before. All my symptoms were worsening, I collected more new ones as the days went on and my mental health was devastating. Anxiety and depression took control of my life. My work life, social life and ability to do simple tasks were affected, as I had over twenty symptoms affecting every aspect of my life. However, doctors told me that I was adequately treated.
Five months in to Levothyroxine, I suggested to my doctor that my thyroid levels couldn’t be right, if I felt this way and that this was causing my symptoms to worsen and my mental health to get increasingly worse. The doctor’s reaction was to trial me on a slight increase in my Levothyroxine dose. He said that this medication was the only thing I needed, however, I only felt a lot on the higher dose.
I was told that the Levothyroxine was fixing everything, that my TSH was now normal, so any lingering symptoms were “all in my head” and I was even told that I needed “to let it go”.
I had never been so upset and astounded. I was not an attention seeker nor making any of what I was experiencing up. I knew my own body and I knew something wasn’t right. I knew the medication they gave me was not working.
I started looking for other patients to discuss how they were doing on Levothyroxine, as well as reading online and buying a lot of books about having hypothyroidism.
Through doing this, I read about another medicine, called NDT (Natural Desiccated Thyroid), and decided that I wanted to try it. After all, what did I have to lose by this point? It sounded much better than Levothyroxine and I was so desperate to feel even a tiny bit better.
NDT has been successfully used for over a hundred and fifteen years in hypothyroid patients and it is available on prescription here in the UK on a named-patient basis, so I asked, but two GPs refused. Eventually, I decided to source it myself. I would, however, urge you to work with a doctor in getting it provided for you as self-sourcing is risky and can be dangerous. Other thyroid medications such as NDT and T3 can be prescribed on the NHS, but no one would do this for me and I wasn’t prepared to wait around any longer while my quality of life got worse.
I started NDT and within a week or so, started feeling much better. My symptoms disappeared one by one. Thankfully, my mental health also improved.
I went back to a third GP to tell him, and he was happy for me. I explained all symptoms had gone except for the fatigue, which was a lot better but not completely gone. He supported my decision to use NDT and sent me to a specialist, an endocrinologist, to discuss this further and possibly get it prescribed.
The endocrinologist wasn’t at all helpful. He dismissed a lot of what I said. I suggested the lingering fatigue I experienced could be my adrenal glands dysfunctioning, possibly producing too much cortisol, and so blocking the NDT from fully working. He laughed and said ‘just by looking at you, I can tell you don’t have adrenal problems’, and instead diagnosed me with Chronic Fatigue Syndrome.
So I came home, cried out of frustration, then ordered an adrenal test myself. He also refused to prescribe NDT because, in his words, his panel would not approve it so it would be a waste of time. Basically, he didn’t care enough about his patient to even try to help her.
After completing the adrenal test I ordered myself, I sent it back for analysis and a couple of weeks later I got the results. They were indeed dysfunctioning. My cortisol output was elevated. Again, the doctors were wrong, so very wrong. I started working on this immediately, buying books and learning about how to fix it. Through addressing this with the help of a functional medicine practitioner and through my own research, I can only be incredibly happy that I have my life back.
I also addressed my low Vitamin D level, low ferritin (iron), sex hormone imbalance (oestrogen dominance), leaky gut and gut health, started supplementing a few other vitamins and have gone gluten-free. Among many other things. As well as taking thyroid medication to replace the hormones I’m missing due to hypothyroidism, I also started looking at ways to control my Hashimoto’s and began piecing together my own thyroid health jigsaw puzzle.
A few years on now, I still self-source my thyroid medication, although work with my GP who is happy for me to be on it and monitors me, adjusting my thyroid medication dosage when needed. However I unfortunately have had to pay for a lot of tests myself in order to make progress.
I work with my GP where possible, as this is the ideal way to manage my health, but I have had to learn to advocate for my own health also.
My GP is supportive, although admits he doesn’t know a lot about thyroid problems, so is open to what I suggest after researching. I work with him, sharing what I learn as I go and the endocrinologist, on my second visit, was astounded by the progress I had made in just five months. He admitted that he was wrong about NDT. I hope to have my NDT prescribed one day, although, like many thyroid patients on the NHS, cannot afford a private prescription at this moment in time, and having it prescribed on the NHS is hugely unlikely. I am still aiming to be able to have it prescribed one day.
So today, I’m finally thriving instead of just surviving, with thyroid disease. My Hashimoto’s is in remission and I’ve since covered in detail everything I’ve done to get my life back on track, in my book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired.
Read all of my personal thyroid journey updates here.
My plan is to help others by sharing what I learn as I go along on this eventful thyroid journey myself, whilst empowering others to be their own thyroid advocate too.
This page may contain affiliate links, to find out more information, please read my disclosure statement.