Click here to listen to a reading of this blog:
Originally published on 25th March 2016 Last updated on 20th September 2019
There are some things you just shouldn’t say to people with hypothyroidism.
1. “You just need a good nights sleep!”
Unfortunately this just isn’t how it works. Believe us, we’ve tried sleeping lots and we’re not cured yet! And if you live with someone with hypothyroidism, you’ve probably noted how much they sleep and how little difference it seems to make. In fact, we’re so fatigued that we often sleep more than anyone else we know. It’s frustrating!
Thyroid hormone directly controls and affects energy levels, which means that fatigue is the most commonly complained of symptoms with the condition. We are easily tired and often feel tired all the time, scarcely waking up feeling refreshed. The best way I can describe it is every-second-I’m-consciously-having-to-keep-each-eyelid-open tired. It’s I’m-scared-to-blink-or-I’ll-fall-asleep tired. It’s exhaustion past the point of exhaustion.
2. “You’ve got medicine now. You must be fine!”
Not necessarily and this is a very big misconception. Unfortunately, it can take months or even years for people to get their thyroid medication right.
Since a lot of doctors aren’t usually very helpful when it comes to trying different medication options to see what works for each patient, it can be a real upwards battle at times. Most tend to have a ‘one medication works for all’ approach which is very unhelpful indeed. And even when we do get our thyroid medication right, we can also have other conditions that have developed because of the thyroid not being adequately treated for quite some time.
This includes vitamin deficiencies, adrenal problems, mental health conditions and digestive issues to name just a few. So don’t just assume we’re OK once we’re put on thyroid medication, it’s usually just the beginning! We’re happy to talk to you about how we’re doing and how our current medication is working.
3. “Be patient.”
Being told to give the thyroid medication time to work can be frustrating. If we become a little impatient, frustrated or fed up, please bear with us. We’ve probably had a long battle with getting this diagnosis in the first place, so allow us to feel a little impatient. Don’t you feel impatient waiting for the us you remember before hypothyroidism, to fully return?
4. “Just eat less and exercise more!”
We may gain weight and cannot control it. We also struggle to then lose it. Some even diet and force unhealthy exercise regimen and end up gaining more weight.
Only when our thyroid hormone levels are corrected, thus correcting our metabolic function, do we have a chance of losing excess weight and stop gaining it at all. Not to mention that most of us don’t have the energy to move any more than we already do, due to the slow metabolism. Over exercising can also make you more hypothyroid.
5. “It’s all in your head. You just need to let go.”
My own doctor told me this when I visited him time and time again complaining of my initial thyroid medication not helping at all. Needless to say, I haven’t seen that doctor since, as I was so frustrated and I found one who does now listen and has got me on the medication I need to feel well.
Unless you are in our shoes, you cannot make a call what is and isn’t real. Do you know our minds and bodies as well as we do?
6. “You’re so hormonal!”
Please don’t judge us because of our health condition. Please don’t assume anything we say that you disagree with, is because our ‘crazy thyroid hormones’ make our moods and emotions go up and down.
7. “You have this condition because of ___”
Insert ‘not wearing a coat when you go out’, ‘your bad diet’, ‘not eating enough fruit and veg’ etc. here. Sure, those things won’t help your thyroid, but calm down, it doesn’t cause thyroid problems! It makes me laugh.
I’ve had the ‘you don’t wear enough layers’ from “expert” people around me, as the cause for my hypothyroidism, and when I try to explain that I actually have Hashimoto’s, an autoimmune disease which is destroying my thyroid, thus the cause for its dysfunction, they just go blank.
8. “The thyroid doesn’t even do anything.”
This not only belittles what we’re going through, but it also makes you look very uninformed. Sure, I didn’t even know where the thyroid gland was when I was first diagnosed! But don’t assume it doesn’t do anything. It actually does a lot of important stuff. The thyroid gland produces hormones needed for every process and every cell of the body, so when this goes wrong, a lot of other stuff does too!
So yes, that little butterfly shaped gland in your neck is important for every single function and cell in your body. That’s how important it is.
Let me know in the comments below, what else you would add to this list.
This excerpt is from the book You, Me and Hypothyroidism: When Someone You Love Has Hypothyroidism. A book for those who know someone with hypothyroidism, such as a spouse or partner. More information on libido as well as many other topics can be found in the full book.
10 Things You Should Say To Us.
You can click on the hyperlinks in the above post to learn more and see references to information given.
Please remember that if you’re a thyroid patient living with poor mental health or lingering physical symptoms, that you don’t have to live this way. To address why you may still be feeling unwell (often despite being on thyroid medication too), please see this article and go through each suggestion, putting your thyroid jigsaw back together.
Rachel Hill is the highly ranked and multi-award winning thyroid patient advocate, writer, blogger, speaker and author behind The Invisible Hypothyroidism. She has two books: ‘Be Your Own Thyroid Advocate‘ and ‘You, Me and Hypothyroidism‘. Her thyroid advocacy work includes authoring books, writing articles, blogging and speaking on podcasts, as well as being a board member for The American College of Thyroidology. Rachel has worked with The National Academy of Hypothyroidism, BBC, The Mighty, Yahoo, MSN, ThyroidChange and more. She is well-recognised as a useful contributor to the thyroid community and has received multiple awards and recognitions for her work and dedication. Rachel is British, but advocates for thyroid patients on a global scale.