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There are some things you just shouldn’t say to hypothyroid patients.
1. “You just need a good nights sleep!”
No. No no no no no. Believe us, we’ve tried! We’re so fatigued that we often sleep more than anyone else we know. So believe us when we say that sleeping any more than we already do isn’t going to help. Having an underactive thyroid (hypothyroidism) means our thyroid is just that: underactive. This means our metabolism is quite a bit slower than yours, so we don’t have as much energy as we should. This means we’re easily tired and often tired all the time. In fact, it’s more than just being tired, it’s 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.
2. “You’ve got medicine now. You must be fine!”
Nope. Not necessarily. It can take months or even years for people to get their thyroid medication right. It usually takes a good few weeks for it to start kicking in, once we get the dosage and type of medication right for us. Some patients take years to get this right, since doctors aren’t usually very helpful when it comes to trying different medication to see what works for us. And even when we do get our thyroid meds right, we usually 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 acid reflux to name just a few. So don’t just assume we’re OK once we get medication for it. Ask us; we’re happy to talk to you about how we’re doing.
Doctors, don’t assume that just because we have meds, and our TSH is ‘fine’, that we’re now ‘fine’. Going by TSH alone is inaccurate as it doesn’t give us the full picture, anyway. It just forms part of the complete thyroid panel.
3. “Be patient.”
Being told to give the thyroid medication time to work can be so frustrating. If we become impatient, frustrated and fed up with waiting for our medication to start working, don’t blame us. We’ve probably had a long battle with getting this diagnosis in the first place, as so many doctors pass hypothyroidism off as other conditions like depression, chronic fatigue syndrome and fibromyalgia. We’re entitled to feel a bit impatient.
4. “Just eat less and exercise more!”
The main purpose of thyroid hormones, produced by the thyroid gland, is to ensure the metabolism is running properly, and the metabolism’s job is to produce heat and fuel to keep us warm and give us energy. Now, being underactive/hypothyroid, we don’t have enough of those thyroid hormones, so our metabolism doesn’t work properly. Therefore, people with an underactive thyroid or hypothyroidism have a slow metabolism, so will have symptoms associated with a slow metabolism, such as cold intolerance, extreme tiredness and weight gain.
We gain weight and often can’t control it. We also struggle to then lose it. Some even diet and force unhealthy exercise regimes and end up gaining more weight.
Can you imagine how hard that is to deal with? Only when our thyroid hormone levels are corrected, thus correcting our metabolic function, do we have a chance to lose the 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. Most of us aren’t pigging out on donuts and ice cream all day. We just fell victim to a rubbish thyroid and inadequate metabolism, so please don’t insinuate that we just need to eat less and/or move more.
There is so much more at play and it’s incredibly insensitive.
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 insulted and I found one who does now listen.
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?
Inadequately treated thyroid problems can lead on to so many other issues, such as depression for example, and when I told my doctor that despite my TSH being fine, I still felt increasingly unwell and depressed, he told me that it was all down to the depression that I was absorbed by causing the ongoing fatigue, muscle aches and pains, acid reflux, migraines, mood swings, brittle hair and nails etc. So, what he was basically saying is that I was imagining them all basically.
But as soon as I realised that going by TSH alone was inaccurate, I had my other levels tested, switched to another medication, and all my symptoms cleared, including the depression. So it wasn’t all in my head at all.
Don’t judge someone or tell them they’re wrong about their own body, when they know it better than anyone.
6. “You’re so hormonal!”
Don’t judge us because of our health condition. 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. We can be mad, annoyed or irritated for legitimate reasons; maybe you ticked us off or someone said something nasty to us. Maybe we’re fed up of battling this health condition, but don’t assume that it’s just because of our thyroid hormones being off. We’re entitled to feel angry, irritated or express strong opinions too, without our health condition being blamed. You’re allowed to feel those things, so why are we not, without it being passed off as our thyroid condition?
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 ignorant. Sure, I didn’t even know where the thyroid 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! Patients have a whole host of symptoms and problems.
So yep, 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.
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.
Written by Rachel, The Invisible Hypothyroidism
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Rachel Hill is a highly ranked and award-winning Thyroid Patient Advocate, blogger and author. She has worked with The National Academy of Hypothyroidism, The BBC, The Mighty, Yahoo, MSN, Dr. Hedberg, Thyroid Refresh 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. She received Six 2018 WEGO Health Award Nominations.