Hi, I’m Rachel and I am one of the many faces of thyroid disease.
“If you are looking for friendly, down-to-earth, commentary and information on thyroid conditions, The Invisible Hypothyroidism is the place to go.” – The National Academy of Hypothyroidism
- The World Health Organization estimates that 750 million people in the world have some form of thyroid disease
- Including at least 1 in 20 people in the UK say the BTF (though I believe it’s more common)
- And more than 12 percent of the U.S. population developing a thyroid condition during their lifetime, say the ATA
- Yet the ATA also say that as many as 60% are undiagnosed
And of those diagnosed, a lot are not adequately treated.
Thyroid disease affects millions of people worldwide and this could be any of us. All ages, ethnicities, shapes and backgrounds. This is why we need adequate testing and treatment for all. I believe in each patient getting the right treatment for them. There is no ‘one size fits all’ approach to hypothyroidism.
So, after being a thyroid patient who has been very unwell with it at times, I have one simple message:
“Be Your Own Thyroid Advocate.”
I am a thyroid advocate as well as a writer. I am the most prominent thyroid blogger and advocate from the UK, as the vast majority are based within the US, so I also provide a valuable voice for thyroid patients who live in the UK and are treated for their hypothyroidism on the NHS. Saying this, I do speak for those living with thyroid disease all over the world. You can see the most frequently asked questions I receive here.
I am passionate about helping those with hypothyroidism and giving them a voice. So often we are not listened to.
My mission is to do this by:
- Writing about my personal experiences in terms of both my physical and mental health, to make others aware of what it is thyroid patients go through and experience, as well as letting other thyroid patients know that they are not alone.
- Producing informative articles based on science, research, books and other thyroid blogs and websites, to educate and empower thyroid patients, so that they can make improvements in their own health and be their own advocate.
- I’ve set up two online support groups and forums, which support and educate thyroid patients and their other halves.
- I fund-raise for thyroid charities.
If you’re interested in working with me, please check out my highlights and stats here, including all the projects and work I’ve been involved in.
I’m not a doctor, but another thyroid patient, who is sick and tired of being sick and tired. Being a thyroid patient who advocates for better understanding, knowledge, treatment and awareness gives me the best experience possible to do that job, because I understand better than anyone, what it is we go through with Hashimoto’s and Hypothyroidism and come up against.
Society generally sees hypothyroidism, a lifelong condition, as being manageable in day to day life, uncommon and ‘just an excuse for being overweight and lazy’. None of which are true. The condition, when I was at my worst, gave me over 20 debilitating symptoms, which took control of my life. It can be devastating and is hugely misunderstood.
So you can see how much I’ve experienced myself, I share my thyroid journey so far, below.
I first had symptoms of Hypothyroidism at sixteen years old. People labelled me ‘lazy’ for lack of energy and stamina and I was always cold. Symptoms really ramped up after I had swine flu, also at sixteen, as even after I had recovered I went through bouts of being tired all the time, having achey legs and poor stamina. I also started to become ill a lot more often, whereas before I’d never even been to the doctor apart from my jabs as a baby.
Most of my hair then fell out at eighteen years old, after having a weird strain of flu that developed in to pneumonia (which was so severe I was in intensive care, on life support, for three weeks) and I was also left anaemic. I also started having recurring, strong bouts of depression and anxiety from this age. I was on-off anaemic for a few years and never felt fully well again; feeling tired and achey and having other random things such as leg cramps, migraines and irregular periods, but with no explanation from doctors.
At twenty-one years old, the doctors eventually tested me for hypothyroidism and I was told I was ‘borderline‘ hypothyroid. Because I was ‘only borderline’, I was left with no thyroid medication for a while longer, which made me more unwell, and then I was eventually diagnosed with an underactive thyroid in the Summer of 2015, at twenty-one years old. This angered me as the doctors had missed it for so many years and they never once suggested or tested me for it until now. They had never considered it, despite me complaining of on-going fatigue, poor stamina, poor immune system, pains in my legs and a possible history of it in my family. All the signs were there but it was missed.
When I was finally ‘bad enough’ for medication, I was put on Levothyroxine, without knowing about the endless problems patients reported about it. Levothyroxine sadly didn’t work for me and days, weeks and months passed by with me 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 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.
Five months in to Levothyroxine, I suggested to my doctor that my thyroid levels weren’t right, and that this was causing my symptoms to worsen and my mental health to get increasingly worse. The doctors’ reaction was to put me on more Levothyroxine. They said this medication was the only thing I needed, but I felt a lot worse on the higher dose.
They told me that the Levothyroxine was fixing everything, that my TSH was now fine, so any lingering symptoms were “all in my head” and I needed “to let it go”. I’d never been so insulted. I was not an attention seeker or making it 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 this drug, as well as reading online and buying a lot of books about having hypothyroidism. I read about another medicine, called NDT (Natural Desiccated Thyroid), and wanted to try it. It sounded so much better than Levothyroxine and I was so desperate to feel even a tiny bit better again, that I felt I had nothing to lose. My life was in tatters.
NDT has been successfully used for over a hundred and fifteen years in hypothyroid patients. Thyroid UK, the thyroid charity, stated that I could get it on prescription, on a named-patient basis, so I asked but two GPs refused, so I sourced it myself. I would, however, urge you to work with a doctor. Self-sourcing is risky and can be dangerous, but in my case the last resort. Other thyroid medications such as NDT can be prescribed on the NHS, but no one would do this for me and I wasn’t prepared to wait around any longer.
I started NDT and within a week or so, started feeling much better. My symptoms disappeared one by one over six weeks. Thankfully, my mental health also magically got better (or not so magically, T3 is reported to be the key, included in NDT but not Levothyroxine).
I went back to a third GP to tell him, and he was happy for me. I explained all symptoms had gone except for my tiredness, 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 told me I shouldn’t be taking the new medication because it doesn’t work, that my symptoms got better simply by coincidence, that my weight gain was because I ate badly and didn’t move enough, so I was pretty angry, as you can imagine. I took a lot of care to live healthily and stuck to a limited amount of food a day; I often didn’t even have an appetite. I suggested the lingering tiredness could be my adrenal glands dysfunctioning, possibly producing too much cortisol, and so blocking my NDT from fully working. He laughed and said ‘just by looking at you, I can tell you don’t have adrenal problems’. 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 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 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.
I have also addressed my low vitamin D level, supplementing it along with a few other vitamins and have gone gluten-free. I self-medicate, although working with my GP who is happy for me to be on NDT and monitors me closely, adjusting my own thyroid medication when needed and I unfortunately have had to pay for a lot of tests myself in order to make progress. I work with my GP and endocrinologist where possible, as this is the ideal way to manage my health, but I have had to learn to advocate for my own health.
My GP is supportive, although admits he doesn’t know a lot about thyroid problems, so is open to what I suggest. I work with him, sharing what I learn as I go but 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 and adrenal output being linked to the thyroid and its function.
I did very well on NDT for the first year or so, until my menstrual cycle became massively irregular and I developed severe cystic acne on my face, neck, chest and back. I suspected that my attempts at addressing the adrenal fatigue weren’t working, so after being denied sex hormone testing from my doctor, I arranged my own, which confirmed a sex hormone imbalance – oestrogen dominance (also called low progesterone) brought on by continuing adrenal dysfunction. I have been checked for PCOS which came back negative and my testosterone levels are normal.
Since going gluten free and using natural progesterone cream, the cystic acne improved but did still flare up. My blood pressure returned to normal but I have ups and downs with my physical and mental health. In the summer of 2017, I made the decision to change from full-time to part-time hours at work and seek out a functional medicine doctor interested in Hashimoto’s specifically, to help control my autoimmune thyroid disease, sex hormone imbalance and adrenal fatigue.
Since I’ve been under her care, my periods have become regular once more, the acne has improved, my mental health is the best it’s been in a long time and overall I’m doing very well. Confirming that I have candida and leaky gut, this is where we’re focusing at the moment to get me back on to the road to recovery for the longterm.
The lesson here? Never just take your doctor’s word as gospel without asking questions. Do your own research, teach yourself, talk to others with this condition and be the master of your own health. Be your own thyroid advocate.
My plan is to help others with what I learn as I go along on this eventful thyroid journey myself.
Rachel, The Invisible Hypothyroidism
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