Today I want to share an interview with Rachel, the author of the fab book I gave a little sneak peek at in December – Be Your Own Thyroid Advocate (When You’re Sick and Tired of Being Sick and Tired).
I’ve read this myself and found it to be an incredible resource that I wouldn’t hesitate to recommend. Rachel writes authentically and efficiently, covering her own experiences and using thoroughly researched and accurate information to provide a blend of self-help and support. It’s a book that can be read from start to finish, but can easily be kept on hand to pick up and flick to relevant areas whenever needed.
Topics include the likes of Symptoms, diagnosis, medications, related conditions (such as adrenal fatigue), Rachel’s personal experiences, dealing with medical professionals, work and employment, addressing the grief of who you were prior to your symptoms, a chapter for friends and family to better understand the patient’s condition, encouragement for what you’re going through and references for further support.
This is for anyone and everyone. Whether you suspect thyroid issues may be behind your symptoms, have been diagnosed and are navigating the challenges with treatment and management, or whether you’re a friend or loved one of someone with a thyroid condition.
It’s both practical and encouraging, and I think it’s hugely important because so many struggle with thyroid problems in the face of medical systems that do not make the challenges easy. This is why many go undiagnosed, misdiagnosed or struggle with finding suitable treatment. When it comes to thyroid issues, it’s vital to empower yourself, to arm yourself with knowledge, and, as Rachel says so well, to be your own thyroid advocate.
Me : Can you tell us in just a couple of sentences what your book is about?
Rachel : It is essentially a retelling of my own story back to good health with hypothyroidism and Hashimoto’s, including my lowest points, and everything I learnt and did that gave me my health and quality of life back. I hope it is also an uplifting and motivational tool for those struggling to adapt to their new diagnosis.
What chronic or invisible illness do you live with?
I have Hashimoto’s and hypothyroidism, but am also diagnosed with Anxiety Disorder and Chronic Fatigue Syndrome. However, since the CFS has practically disappeared since optimising my thyroid treatment, I see that as more of a symptom of my mismanaged hypothyroidism, rather than a condition in its own right, in my case.
You are grateful in your book for your husband, Adam, and your friendship groups. How have your struggles with hypothyroidism and Hashimoto’s affected your relationships over the years?
I am so, so grateful for Adam. We’ve been together since we were sixteen years old, so he’s seen me go through all of my health issues from start to end, as he met me before I developed any health conditions.
With hypothyroidism and Hashimoto’s, it’s no secret that it can be a strain on any relationship where you used to be responsible for half of the adult duties – such as going to work and paying the bills, housework, grocery shopping, cooking meals etc. As thyroid disease typical makes those with it feel extremely fatigued, worn down, brain fogged and even mentally struggling, your ability to keep up with tasks can be diminished.
This was certainly true at the beginning of my thyroid diagnosis. I went from keeping our home spotless and being very ‘on it’ and a ‘go-getter’, to suddenly bed-bound with the symptoms of hypothyroidism and Hashi’s. Adam became understandably frustrated at times and it does test you as a couple. We were in our twenties but feeling like an elderly couple because he was essentially my carer for a while.
I found the spoon theory that so many chronic illness patients share online, was the best tool in helping Adam understand my new life with thyroid disease. Reading about how my energy levels now differed to his, he soon learnt to support me in whichever way I needed him – help getting up and down the stairs at home, running me baths, doing more cooking and housework – but he also grew in noticing other ways he could support me, that I hadn’t even thought of.
For example, he’s learnt over the years when to ensure I rest, what my limits tend to be with social events and managing the diary so I don’t overcommit myself and have a flare up day, and even what nutrition I need on bad health days. So when I’m not thinking clearly and just want ice cream and chocolate, he can take charge and make sure I get the nutrition I actually need by presenting me with broths, soups, and healthy meals instead!
It has really tested us a couple and I’ve heard from thyroid patients who have even divorced over the effects of this disease, so I’m very grateful that we’ve managed to adapt quite well and he’s been so involved with my thyroid journey.
Your experience with illnesses earlier on, from swine flu to hospitalisation, from pneumonia and spending your 18th birthday on life support, sound terrifying. I know from my own hospital admissions that it’s not a fun place to be, and it’s also difficult for loved ones to see you so ill. Have your experiences changed your view on life?
I was pretty young at seventeen years old, when I experienced my first and only hospital admission. As I cover in the book, it wasn’t a pleasant stay although I was barely conscious for a lot of it and can’t recall much. But I knew I wanted to get home!
I definitely do whatever I can to avoid any trips to the hospital these days and for example have utilised the NHS 111 helpline here in the UK, when I’ve been concerned about whether I need to go to hospital. Every time I’ve used it, I haven’t needed to go, which is great because obviously if you don’t need to go, you shouldn’t!
I’m very active in my own health and healthcare and I guess that that may be encouraged by the fact that no doctor seemed to know what to do with me, how to help me, or even what was wrong with me, when I was in the hospital. This is why I eventually ended up with pneumonia and on life support. So I think it’s understandable that I therefore like to know what’s going on with my body and promote good health for it wherever possible. If I can prevent needing to go to hospital, then I’m keen to!
You were diagnosed with Hashimoto’s Thyroiditis and ‘borderline hypothyroidism’. In the UK, thyroid problems are typically tested for by only TSH. Do you think it’s important for those with symptoms to also be checked for TPOAB (Thyroid Peroxidase Antibodies) and TGAB (Thyroglobulin Antibodies) too, even if it means paying privately?
Absolutely. TSH only gives an indication of what your thyroid hormones may be doing, as it is a pituitary hormone and not a thyroid hormone itself. So using TSH alone is never going to give a comprehensive view of things. Thyroid antibodies are also crucial because it determines if you have the autoimmune version of hypothyroidism, which around 90% of us do, and this can alter your treatment going forward, as looking to lower these antibodies is often associated with bringing the condition under control and reducing symptoms.
Some people also have Hashimoto’s (positive antibodies) without being hypothyroid yet, or perhaps ‘borderline’ hypothyroid like myself. Typically, you become more hypothyroid as time goes on, due to the antibodies informing us that the thyroid gland is being attacked and inevitably losing function to produce thyroid hormone.
Keeping an eye on any high thyroid antibody levels, whether you’re thyroid hormone levels are low or not, is always a good idea.
I’ve used online laboratory companies many times to order additional tests that my GP says the NHS can’t afford or will refuse to do. It’s a great option and gives you some power back in managing your health.
Adrenal fatigue is another important part of the thyroid picture, and another aspect that’s rarely mentioned by doctors. How can patients be tested for this?
Yes, adrenal fatigue isn’t widely recognised by conventional medicine just yet, but is by many alternative healthcare providers. It is typically tested for with a four point, 24 hour saliva test that measures mainly cortisol. If it is above range or below range, or even very high or very low in range, then you’re typically diagnosed with adrenal fatigue. Four saliva samples are taken over a 24 hour period.
Using online services to order the test yourself, it’s a very simple procedure. Or, you could seek out a medical professional such as a functional medicine doctor/practitioner or naturopath, who is trained in looking for adrenal fatigue and addressing it.
Whilst certain supplements are cited to help with adrenal fatigue, I have personally seen the biggest improvements in mine with the guidance of a functional medicine practitioner unearthing the root causes for it and addressing these.
You’ve provided some hugely practical information on thyroid issues, from the tests to be done to what the results all mean. Without having the full picture and knowing what to look for, could people potentially continue to suffer and see health decline undiagnosed or inadequately for years?
Oh yes. And this is why I promote being your own thyroid advocate. By this, I mean understanding your health condition, what it entails, what tests are needed and results should look like, other pieces of the thyroid jigsaw puzzle that also need addressing… Essentially embracing standing up for yourself and your health.
I wasn’t tested for a thyroid condition until I was five years into the symptoms and complaints. For whatever reason, no one ever thought to check anything more than my iron levels. I do wonder that if I had managed to catch my thyroid condition earlier on, if I would have been able to avoid becoming as ill as I did. I probably wouldn’t have had so many other things to address by the time I was diagnosed, too.
I hope at some point in the future that regular thyroid screening will become part of everyone’s annual check up at the doctors.
So many things can have a knock-on effect with thyroid conditions, such as lifestyle, stress, diet, the need for nutritional supplements, mental health, and other related illnesses. It can be overwhelming to know where to start. Once diagnosed with a thyroid condition, what would you recommend starting with?
I was very overwhelmed at the start!
I always recommend beginning with conventional thyroid medication and focusing on getting your free t3 and free t4 levels optimised. This can resolve symptoms and issues in many thyroid patients and no further interventions are required.
However, if you’re still having issues, then exploring other thyroid medication options and interventions such as those you mentioned, can be helpful. If you’re overwhelmed by a lot of medical talk in certain books or online articles, then start with something a little easier to digest, which is where my book comes in.
I wrote my book “Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired” with the aim of making a book for those who are new to advocating for their health (hypothyroidism and Hashimoto’s), without overwhelming the reader or telling them anything they don’t need to know, to begin with. It’s an introduction to hypothyroidism, written in a down to earth and friendly way.
Online support groups can also be helpful, but are overwhelming to some, so use these with caution until you’re feeling less anxious and overwhelmed about your new diagnosis.
What’s the worst comment or piece of advice you’ve received when it comes to your illnesses?
I’ve heard a few, but I think one GP telling me that my ongoing symptoms must be ‘in my head’ is up there. I’ve unsurprisingly not seen him since!
You’ve covered the different paths of conventional and functional treatments, both prescribed and self-resourced. How long did it take you to find an optimal treatment plan to help your symptoms?
It has taken a few years of trial and error, as it is so individual to each person. There’s no one-size-fits-all approach to hypothyroidism and Hashimoto’s.
However, I give a lot of credit to my functional medicine practitioner who carries on guiding me on improving my gut health and sex hormone imbalance. She has been amazing in supporting me back to good health with hypothyroidism and Hashimoto’s. I have been seeing her for around fifteen months now.
Some medical professionals can be very closed-minded and even ignorant when it comes to thyroid issues. Being listened to and taken seriously is only the start of the battle. Difficulties with diagnostic testing and challenges around treatment can be exhausting to deal with. What would you say to patients who are feeling disheartened and hopeless with it all?
To never give up. Never give up pushing for answers, better treatment, a hope for a good quality of life and the day that you’re not ruled by your thyroid condition. Embrace learning everything you can about your health, thyroid condition and rights as a consumer of healthcare.
I won’t lie and say that it’s easy to find an open-minded GP who will run all the tests and prescribe all the medication, but I can say, hand on heart, that the ability to live with good health again is attainable.
As someone who got to a point of feeling so hopeless and disheartened with it that I struggled to find reasons to live anymore, I have a strong drive to let others who feel that way, know that there is light at the end of the tunnel.
About the author :
Rachel Hill blogs at The Invisible Hypothyroidism.
Check Out The Book :