You Should Be Your Own Thyroid Advocate

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.

So, 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 heart. 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. If they will not listen or understand where you are coming from, keep trying a different doctor until you find one who will. Push to see a thyroid specialist, or an endocrinologist if possible, or, if worse comes to worse, go private and find a doctor who will help you there, although this isn’t an option for all, I understand.

You could even order your own tests from laboratories, but you’ll need to learn how to interpret your results yourself. This is something I am still learning, but with resources like Stop The Thyroid Madness, it’s not as difficult as you think.

The sad truth is, 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.

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.

But, doctors. If you’re reading this, please please please start listening to your patients. I understand you have time limits, and money can be tight, but remember that we are just people, like you. We want to work with you. We are people who have to live with this disease and we’re not trained medical professionals like you, so we have to teach ourselves what you sometimes fail to tell us. We all get things wrong sometimes, like the doctor who told me he knew I didn’t have adrenal fatigue just by looking at me, when I did indeed have it. Spare us just a few more minutes to answer our questions and find out what care is best for the individual patient. Be accepting that perhaps your opinions aren’t the only correct options and that sometimes you ought to listen to our ideas too. For example, not everyone does well on standard T4-only medicine, and you ought to work with us to find what works for us, like whether we need to add T3 or switch to NDT altogether. Your often one-size-fits-all approach is not true. Please open your eyes.

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

To get notified of all my posts, blogs and articles, like my Facebook page here: https://www.facebook.com/TheInvisibleHypothyroidism/ 

And follow me on Instagram.

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. 

-Rachel

About Rachel Hill, The Invisible Hypothyroidism

Diagnosed with Hypothyroidism, Hashimoto’s Thyroiditis and Chronic Fatigue Syndrome (ME), as well as having Adrenal Fatigue and experience with Depression and Anxiety Disorder, Rachel Hill blogs at theinvisiblehypothyroidism.com to help others, covering all aspects of what it’s like to have these conditions. Rachel is one of the many faces of thyroid disease and she’s passionate about helping those with hypothyroidism and giving them a voice.
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2 Responses to You Should Be Your Own Thyroid Advocate

  1. Pingback: An Open Letter: “Dear Doctor, It’s Not All in My Head.” | The Invisible Hypothyroidism

  2. 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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