10 Things People Get Wrong About My Hypothyroidism

I have hypothyroidism. Thyroid disease. An underactive thyroid. Whatever you prefer to call it. And those who don’t know what it is can often make assumptions about it, so let me clear a few things up.

1. “You have thyroid medication that you take daily, so you’re fine now.”

Wrong! So very wrong. Unfortunately, it’s not that simple, and so many people stay unwell for a long time because of this. Even if I do get better, my health condition, like many others, can have bumps where I become unwell again. It can take months or even years for people to get their thyroid medication right. So don’t just assume I’m OK once I get medication for it. Ask me; I’m happy to talk to you about how I’m doing.

2. “Having a ‘thyroid problem’ is an excuse for weight gain.”

While gaining weight with an underactive thyroid is a legitimate symptom of the condition, some patients don’t experience this. 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 means I don’t have enough thyroid hormones getting produced, so my metabolism doesn’t work properly. Therefore, people with an underactive thyroid have a slow metabolism, so they often have symptoms associated with a slow metabolism, such as cold intolerance, extreme tiredness and weight gain. However, since we’re all individuals, this can differ from person to person, based on our genetic make-up, our lifestyles and any other health conditions we have. So, some people don’t experience weight gain. If someone has hypothyroidism and has put on weight, it is actually pretty likely that this is caused by their sluggish thyroid gland.

3. “It’s an easily managed condition.”

This one makes me laugh! Did you know that a healthy thyroid gland adapts? For example, it works harder to produce more heat on a cold day to keep us at a normal body temperature. For those of us with a rubbish thyroid, it doesn’t really do this, so we can feel the cold more than others, take longer to recover from exercise and exertion and struggle more than the average person with a lack of sleep. Did you know that what we eat, drink, how much sleep we get, life stressors, other conditions, etc. all impact our thyroid? So we have a lot to juggle to try and keep it in check. Many people need altered medication dosages and go up and down in dosage. Just as they start to feel well, they can feel worse again! We often develop other conditions as well that need managing alongside our hypothyroidism.

4. “It’s not life-threatening.”

Advanced hypothyroidism, known as myxedema, is a rare but life-threatening condition. Myxedema, or a myxedema coma, is where the body is so starved of the crucial hormones made by the thyroid gland that it shuts down. As explained here, “people with myxedema coma are in a coma or nearly in a coma.” If hypothyroidism is properly controlled, then no, you won’t die.

But if I didn’t take my thyroid medication, I would, quite simply, die.

So yes, it is potentially life-threatening, so it’s crucial that we receive proper treatment for it. On another note, inadequately treated hypothyroidism often leads to mental health issues such as depression and anxiety. I was suicidal myself, when not properly medicated and experiencing hypothyroidism, so yes, this is another way that it is potentially life-threatening.

5. “Men can’t get it.”

Although less common, yes, men can have hypothyroidism and other thyroid issues. A GP once told me that for every eight or nine women who have it, one man does.

6. “It’s caused by not wearing enough layers.”

Although this won’t help your thyroid, it’s not enough to singlehandedly cause it to fail. Over 90% of hypothyroid cases are caused by the autoimmune disease Hashimoto’s thyroiditis.

7. “The thyroid isn’t an important organ.”

Holllllld up! You realize your thyroid plays a part in every single function in your body, right? Those hormones it makes are crucial for pretty much everything! They are necessary for all the cells in your body to work normally. The thyroid regulates the body’s metabolism for heat and energy as well as the heart and digestive function, muscle control, brain development and bone maintenance. It’s kind of a big deal. Imagine how much shuts down when enough thyroid hormones aren’t being produced (hypothyroidism) and how many problems and symptoms this would cause.

8. I use it as “an excuse.”

Trust me when I say that I really, really, really dislike living with this disease. It’s taken control of everything in my life and almost destroyed everything. It’s because of this that I’m now on a mission to show that I can live a good life without it interfering. I’m someone who doesn’t like being defeated and I’m not about to let this little gland in my neck do so. So no, I never use it as an excuse for things. I actually cover up a lot of what it does to me and my life because I hate the thought that it could be winning. So why would I use it as an excuse to cancel on friends or take a day off work? If I do need to do either of those due to my thyroid giving me a hard time, it’s because it genuinely is. And people have no idea how hard that is for me to admit.

9. I’m “too young” to be drastically affected by a chronic health condition. 

My age doesn’t mean squat to my thyroid. I could be 20 or 80 and it’s still going to give me a hard time. I actually showed signs and symptoms at 16 years old. You can trigger hypothyroidism at any age. Being “younger” also doesn’t mean I have it “less bad” than older people with it. We’re individuals and shouldn’t be compared. Let’s remember that, if anything, I’m really annoyed that I developed it so young because I’d have loved some more time to just enjoy myself before being nailed down with this lifelong chronic health condition. A lot of women seem to develop it when they’re middle-aged, which is thought to be linked to menopause or even pregnancy. More info here.

10. I don’t “look” sick.

I’ll take that as a compliment.

But seriously, just because you can’t see it, it doesn’t mean it doesn’t exist. A lot of symptoms are visible in hypothyroid patients – such as dry or thinning hair, fragile nails, dry skin, bags under the eyes, weight gain or weight loss – but not all. The aches and pains, fatigue, brain fog and mental health issues you cannot see. Believe us when we say it is very real indeed. Whether you can see it or not.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

This post originally appeared on The Invisible Hypothyroidism.

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