10 Things You Shouldn’t Say to Someone with Hypothyroidism

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There are some things you just shouldn’t say to hypothyroid patients. 

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!”

As the metabolism is often be slowed in hypothyroidism we can have symptoms associated with a slow metabolism, such as cold intolerance, extreme tiredness and weight gain.

We may gain weight and cannot control it. We also struggle to then lose it. Some even diet and force unhealthy exercise regimes 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.

9. “You’re borderline/subclinical hypothyroid, so you’re fine!”

This one goes out to the doctors. I was told this one myself. ‘Borderline’ is just a term doctors use when you’re just outside of their rigid and outdated ‘range’, and they consider you ‘not bad enough’ to treat yet. Not only is this stupid because different labs and doctors use different ranges, so it all depends on what doctor/lab you get and it’s not even standardised, but people feel best at different levels anyway. It’s outdated to assume that everyone within a certain range of numbers feels fine, when one person might feel unwell with a TSH at 10, and another person at 1 or 5. Why are they not treating individuals as individuals? As well as the fact that TSH is inaccurate to go by on it’s own, anyway. So ‘borderline’ is a term I hate for quite a few reasons. Most people with ‘borderline’ hypothyroidism get increasingly worse as their doctor won’t treat them. I did.

10. “You’ve lost the weight because you’ve been dieting/cutting out gluten/exercising more. Not because you changed thyroid medication.”

Doctors and other people say this, and it’s hurtful and ignorant. If we’ve changed thyroid medication and so fixed our thyroid levels, to correct the metabolism and be able to lose weight again and maintain a healthy weight, then don’t tell us that it’s actually because of increased exercise or a better diet when you have no idea. As already mentioned, correcting thyroid levels means we have better metabolic function. If we say this is the big reason for weight loss and healthy weight maintenance, and chances are, we’ve had a hard and long battle to be able to correct our metabolic function, don’t put it down. Sure, a better diet and more movement will help, but if we tell you it’s from a change in thyroid meds, respect that.

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.

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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