Hi, I’m Rachel and I am one of the many faces of thyroid disease.
Thyroid disease affects so many people and this could literally be anyone, of 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.
After all, we are all different. So I have one simple message:
“Be Your Own Thyroid Advocate.”
I am a thyroid advocate as well as a writer. I am passionate about helping those with hypothyroidism and giving them a voice.
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.
- Writing articles for The Mighty, producing posts about the lesser known sides and struggles of living with Hypothyroidism, Hashimoto’s, CFS/ME, Adrenal Fatigue, Depression and Anxiety.
- Having blogs and articles republished on other sites, too, to spread this message and awareness further.
- Writing articles especially for other websites to reach even further afield.
- Writing for The National Academy of Hypothyroidism.
- Being interviewed and appearing on guest posts by Thyroid Central.
- Setting up and maintaining two online support groups and forums, which support and educate thyroid patients and their other halves.
- Fundraising for the charity Thyroid UK.
I’m not a doctor, but just 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.
Society generally sees this lifelong condition as being manageable in day to day life, uncommon and ‘just an excuse for being fat 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.
Although thyroid disease isn’t generally well recognised:
- The World Health Organization estimates that 750 million people in the world have some form of thyroid disease.
- Including 1 in 20 people in the UK, say the British Thyroid Foundation.
- The ATA say that as many as 60% are undiagnosed..
..And of those diagnosed, a lot are not adequately treated!
Below is my thyroid journey thus far.
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, with cold hands and feet 24/7. Symptoms really began after I had swine flu, also at sixteen, as even when I’d 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. But I was catching everything going round. My hair then fell out at eighteen, 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 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. They never once suggested, tested me for it it or asked about it until now. They never considered it, despite me complaining of on-going fatigue, poor stamina, poor immune system and pains in my legs and a possible history of it in my family. All the signs were there.
I was then put on Levothyroxine, without knowing about the endless problems patients reported about it. Levothyroxine didn’t work for me. Days, weeks and months passed by and I was 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 worse, I collected more and more new ones, 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. I had over twenty symptoms and they were constantly increasing, with new ones adding to it all the time.
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 worse and worse. The doctors’ reaction was to put me on more Levothyroxine. They said the Levo was the only thing I needed. I felt a lot worse on the higher dose.
They told me the Levo was fixing everything, that my TSH was 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 all up. I knew my own body and I knew something wasn’t right. I knew the Levo was not working for me.
I started looking for other patients to discuss how they were doing on Levo, as well as reading on-line and buying a lot of books about having the condition. I read about another medicine, called NDT, 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.
NDT has been successfully used for over a hundred and fifteen years in hypothyroid patients. Thyroid UK stated I could get it on prescription, on a named-patient basis, so I asked but two GPs said ‘absolutely not!’, so I sourced it myself. I would, however, urge you to find a doctor who will work with you to find the best medicine for you. Self-sourcing is risky and can be dangerous. It can be prescribed on the NHS, but they wouldn’t do this for me. They were insistent that Levo was working, but I felt differently. NDT has a complicated history. I’ve covered this in my blog.
I started NDT and within a week or so, started feeling 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. It was a lot better but not completely better. 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 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. I took a lot of care to live healthily and stuck to 1500 calories 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. Adrenal issues are very common with thyroid patients, due to the stress of having the condition in the early days when it’s not properly treated or not treated at all. He 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
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, 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 pay for a lot of tests myself. I work with my GP and endocrinologist where possible, as this is the ideal way to manage my health. My GP is supportive, although admits he doesn’t know a lot about thyroid problems. I work with him, sharing what I learn as I go. My endo, on my second visit, was astounded by the progress I had made in just five months. He admitted that he was wrong about NDT, about saying it was my fault I had gained the weight, about Free T3 not being important and TSH being the most important, and adrenal output being linked to the thyroid and its function.
I gained two stone while on Levothyroxine, which was five months, and since being on NDT, I have lost all of that, at 1-3 pounds a week. I haven’t had to try very hard, since getting my thyroid levels right on NDT has been what’s helped me lose it.
For the past year, my menstrual cycle has been massively irregular, I have pretty bad PMS, and have developed severe cystic acne on my face, neck, chest and back. So after being denied the testing from my doctor, I arranged my own, which confirmed a sex hormone imbalance – oestrogen dominance (also called low progesterone). 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 has improved but does flare up. My blood pressure has returned to normal but I have constant ups and downs with my physical and mental health. In the summer of 2017, I made the decision to change from fulltime to parttime hours at work and seek out a functional doctor interested in Hashimoto’s specifically, to help control my autoimmune thyroid disease, sex hormone imbalance and adrenal fatigue.
The lesson? Never just take your doctor’s word as gospel. 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. Work with your doctor. It’s not as hard as you think. My plan is to help others with what I learn as I go along on this eventful thyroid journey myself. I would always urge you to try every route to find a doctor who will work WITH you. It’s difficult to find, but is the best thing to do.
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I run a Facebook group, called Thyroid Family: Hypothyroidism Advice & Support Group. This group is for underactive thyroid/hypothyroidism patients only, and not medical professionals or anyone else. If you have any questions on living with hypothyroidism, or want some support, help or advice, please join us.
I also run a group for the spouses, partners and other halves of hypothyroid patients, called Hypothyroid Patients Other Halves – Support & Advice Group. This is for the other halves only and not patients.
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