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039: Thyroid Patient Advocate Rachel Hill on Living with Hashimoto’s and Hypothyroidism

Uninvisible Pod

039: Thyroid Patient Advocate Rachel Hill on Living with Hashimoto’s and Hypothyroidism

  Rachel  Hill is an author, writer, thyroid patient advocate, and creator of the award-winning website, The Invisible Hypothyroidism. Diagnosed with hypothyroidism and Hashimoto’s disease, she talks openly and honestly…
September 11, 2019
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039: Thyroid Patient Advocate Rachel Hill on Living with Hashimoto’s and Hypothyroidism

 

Rachel  Hill is an author, writer, thyroid patient advocate, and creator of the award-winning website, The Invisible Hypothyroidism. Diagnosed with hypothyroidism and Hashimoto’s disease, she talks openly and honestly about what it’s like to have these diagnoses, as well as what has helped her and many others to recover their health and to thrive. She is passionate about helping those with hypothyroidism and giving them a voice, and is recognized as a valuable contributor to the thyroid community. 

Listen in as Rachel shares… 

– how she was first diagnosed with hypothyroidism as a teenager 

– that before her diagnosis with Hashimoto’s (at 21), she had two severe flus, as well as symptoms that included uncontrolled loss of weight, migraines, irregular periods, acne, acid reflux, bloating, contact dermatitis, eczema, and the loss of about 80% of her hair 

– how common thyroid disease is – and how few of us are talking about it 

– that her symptoms left her bed-bound and immobile many days, and forced her to reduce her work commitments 

– that she was originally prescribed T4 (Synthroid/levothyroxine) only, and this didn’t’ help – but she started researching alternate options and found a thyroid community 

– that based on her research, she decided she wanted to try NDT (natural desiccated thyroid), which she had to self-source because no doctors in the NHS would prescribe it 

– that not only has she struggled to get doctors to believe her, but many of the fellow thyroid patients she hears from have been in the same boat (including Lauren) 

– the emotional toll of not being believed as a patient 

– the importance of becoming an active participant in your own healthcare – in other words, becoming your own advocate 

– how risky self-sourcing medications can be 

– how important it is to always keep your doctors in the loop with regard to medications and treatments 

– the best tests for thyroid function, and what they teach us: TSH, free T3, free T4, thyroid peroxidase antibodies (TPO), thyroglobulin antibodies (TgAb), and reverse T3 (which can often be the most difficult to obtain) 

– why TSH isn’t enough of a test on its own in order to fully understand our thyroid function 

– that Hashimoto’s and hypothyroidism are not mutually exclusive diagnoses 

– that her husband, Adam, has acted as an advocate for her in medical settings 

– that, disappointing as it may sound, female patients often find they are taken more seriously by doctors when they bring a male advocate with them to their appointments 

– that her husband’s advocacy has brought them closer together – so much so that they have now written a book together! 

– that her husband truly understood what she was experiencing when she explained Spoon Theory to him 

– that fatigue and brain fog always troubled her when she was sick, and made her worry that she might have early-onset dementia 

– that she now avoids gluten; when she does accidentally consume it, she can be knocked down for a few days 

– the importance of making your workplace as comfortable and accommodating as possible for your needs when you have chronic illness 

– the importance of conserving energy, even in small ways, when you live with chronic illness 

– how her book, Be Your Own Thyroid Advocate, was designed to help thyroid patients – and was born from her blog, The Invisible Hypothyroidism 

– info about her newest book with hubby Adam: You, Me, & Hypothyroidism, which charts both patient and loved-one POVs on navigating chronic illness 

– how she started her award-winning blog 

– that while the NHS is wonderful, it has let Rachel down as a thyroid patient – she wasn’t tested for hypothyroidism until she’d had symptoms for 4+ years 

– how common thyroid disease is – 1 in 20 in the UK live with it, but as much as 60% of cases are undiagnosed 

– the fact that although so many people likely have thyroid disease, it’s not commonly screened in the UK 

– that UK doctors are forced to jump through additional hoops to screen and medicate thyroid disorders 

– the importance of power in numbers to create change 

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