You Should Be Your Own Thyroid Advocate

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You would think that finding a doctor who will listen to you and treat you like an individual, giving you the treatment best for you, would be pretty easy.. but it’s not always.

It happens all too often.

I’m going to tell you why you should take your health back in to your own hands, researching and learning lots about it, and why finding a doctor who will listen to you and treat you as an individual patient is hard to find, but invaluable.

In the Facebook support group I run, this happens most days;

Someone joins the group, and their first post is one big worry. Full of questions, including basic things, that their doctor hasn’t told them.

All their doctor has told them is that they have Hypothyroidism and they’ll need medication for the rest of their life, then proceeds to hand them a prescription, before sending them away. This isn’t right, surely?

I was lucky enough for my GP to explain the whole process of how hypothyroidism occurs, and he even drew me a diagram. But it’s not like that for most thyroid patients. And this appointment was a one-off. After this, he just didn’t have time for me and any questions I had.

The things people ask when they first join the group include: “Will this get worse?” “Will I ever get back to normal?” “What is hypothyroidism?” “So what do I do now?” “What will the thyroid medicine do?” “What are the symptoms?” “Can it kill you?” 

The first things  I ask these new members, are what their doctor actually told them, what their most recent blood test results say, and what medication they have been put on. No one should leave their appointment scared, upset or confused. I remember vividly, the worst doctors appointment I have ever had. I left feeling all those things, and I broke down in tears outside the room. I proceeded to start up this blog and become my own thyroid advocate, and help others where I could too.

Without a doctor giving the patient the right information, a patient cannot make good decisions about their health or know where to start. Anyone treated this way can easily jump to the worst case scenarios and panic. This is where they look for answers elsewhere, like in my Facebook group.

The frustrating thing is, it would have taken the doctor just a few minutes just to explain what hypothyroidism means, which could actually make all the difference in how a person handles their diagnosis. 

So, I always recommend patients do their own research, read blogs, books and get other patients’ experiences on having the condition, and then go in to your doctor again, armed with lots of new knowledge, and aim to build up a good relationship with that doctor. I tell them to keep trying different doctors until they find one they can build mutual respect with. One who will listen. I tell them to write down everything they want to say so that the intimidation of a trained professional doesn’t make them forget anything. I explain to them that you’re best working together as a team and let them know that you want to be a partner with them in your healthcare. After all, you are an active participant in your own health.

If a doctor will not listen or try to understand where you are coming from, keep trying different doctors or medical professionals until you find one who will. Push to see a thyroid specialist, or an endocrinologist if possible, or go private/see a functional or holistic doctor who will help you.

You could even order your own tests from laboratories, but you’ll need to learn how to interpret your results yourself.

The sad truth is, that in the UK especially, until we get a much needed overhaul of the NHS, we are going to have overworked, pushed-for-time doctors (and nurses), with small budgets, resulting in patients who are not going to get all the information and care that they need. And internationally, until mainstream medicine catches up with the most effective treatment and management options of thyroid disorders, patients will carry on feeling unwell due to inadequate treatment.

Therefore, you should be your own advocate and prepare to stand up for yourself, doing lots of research, to make sure you get the best care possible. And most importantly, listen to your body. You know better than anyone if something isn’t right.

You can also read more about advocating for yourself in my book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired

You can click on the hyperlinks in the above post to learn more and see references to information given.

If you found this article beneficial, please take a moment to share it so we can help others get better with hypothyroidism and Hashimoto's, whilst also raising awareness. "Be Your Own Thyroid Advocate."

Written by Rachel, The Invisible Hypothyroidism

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Rachel Hill, Thyroid Patient Advocate, blogger and author, has Six 2018 WEGO Health Award Nominations. She is a highly ranked writer appearing in the Top Hypothyroidism Websites and Top Thyroid Websites and has worked with The National Academy of Hypothyroidism, The BBC, The Mighty, Yahoo, MSN and ThyroidChange, to name just a few. She is well-recognised as a useful contributor to the thyroid community and also contributed the foreword to Emily Kyle’s The 30-Minute Thyroid Cookbook.

One thought on “You Should Be Your Own Thyroid Advocate

  1. I was told I didn’t have adrenal fatigue by looking at me he could tell, even with my saliva cortisol results he said it wasn’t recognised under the NHS. He is making me do urine and blood test now (it’ll still be high u know) he also said uat stems from something in ur body going wrong so we need to find that and fix it as u will incur higher levels of antibodies. Well if they know that why don’t they do every test possible when u first discover the uat? Oh yes money! It infuriates me that they only do anything if u sit and ask!

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