An Open Letter to Those Who Know Someone with Hypothyroidism

Originally published on 6th April 2016
Last updated on 15th July 2024

Hello friend, family member, spouse, work colleague or doctor of someone who lives with an underactive thyroid or hypothyroidism. You know someone living with an often misunderstood disease. 

If you’re not a medical professional, you’re probably wondering what exactly an underactive thyroid or hypothyroidism is, or how it affects someone who lives with it, so I’ll do my best to explain it as simply as possible!

You’ve likely already heard some things about it, for example that it is an excuse people use for being overweight. And not only this is hurtful, but the weight changes are also only a tiny part of what it can do to someone.

In reality, hypothyroidism does so much more to its host. It hurts when we see people use the term “thyroid problem” as code to describe someone who is overweight. It also belittles the condition. It’s so much worse than just weight gain, although this is still a legitimate symptom.

The thyroid gland is located in the neck and its hormones are required for every cell and function of the body. An underactive thyroid means just that; it’s under active. It’s slow and sluggish and not performing properly, meaning a slow metabolism that causes weight gain and very little energy, as well as lots of other symptoms. The same goes for those who are hypothyroid through having no thyroid gland at all.

For the thyroid gland to function properly, we need the right amount of thyroid hormone in our bodies. If we don’t have this, it affects our energy levels, as well as lots of other things: sleep cycles, body temperature, alertness, thinking clearly, appetite and fertility, to name just a few.

Hypothyroidism is most commonly caused by an autoimmune disease, such as Hashimoto’s Thyroiditis or Graves Disease. Sometimes it is caused by having treatment for hyperthyroidism (an overactive thyroid) or having had treatment for thyroid cancer. The treatment often used for these, radioactive iodine treatment or a thyroidectomy, can result in the patient becoming hypothyroid. So any of these could have caused the person you know to have the condition.

You may even know another person with hypothyroidism, who takes medication for it and is seemingly OK, but this isn’t the same experience for all of us. Actually, a lot of thyroid patients find it’s not easily treated and controlled. The other person you know may not have told you the full extent of how it affects them, either, because we often feel to embarrassed about it to be fully open.

Hypothyroidism can cause mental health conditions like depression and anxiety, as well as physical symptoms like loss of hair, brain fog, aches and pains throughout the body, constipation, an increase or decrease in blood pressure and even scary heart palpitations and loss of appetite, to name just a few.

You can imagine that a lack of sleep, or needing to sleep lots but actually not feeling any better when we do, may make the simplest of everyday tasks difficult or impossible for a thyroid patient.

The best way I can describe hypothyroidism symptoms is by comparing them to the flu. The fatigue and aches are very similar. You know how frustrated, fed-up and useless you feel when you’re ill and have things to do? That’s how it can be to have hypothyroidism. Except we have no choice but to work, run a family, house, maintain a social life (or at least try to) and try to maintain a positive attitude towards life.

Combine it with all of these symptoms here:

• Tiredness and fatigue
• Poor stamina
• Feeling weak
• The need to nap more than others
• Long recovery period after activity
• Arms feeling like dead weights after activity, limb numbness
• Inability to exercise, or withstand certain exercises
• Diagnosis of Chronic Fatigue Syndrome
• Sensitivity to cold or heat
• Weight gain and inability to lose weight
• Unintentional weight loss (less common)
• Constipation
• Depression
• Anxiety
• Feeling more emotional than usual / mental health struggles
• Slow movements, speech and thoughts
• Brain fog, confusion and memory problems
• Itchy and sore scalp. Dry, tight skin. Eczema.
• Muscle aches, pains, cramps and weakness
• Poor appetite
• Brittle hair and nails
• Hair loss
• Hair not retaining hair dye
• Loss of libido (no sex drive)
• Numbness in limbs
• Irregular periods or heavy periods, any period complaints
• Fertility issues
• Migraines and headaches
• Hoarse voice
• A puffy-looking face, “Moon Face”
• Thinned or partly missing eyebrows
• A slow heart rate or one that increases more so than a healthy person’s after physical activity (e.g. after walking up the stairs or emptying the washing machine)
• Hearing loss, tinnitus
• Anaemia
• Poor circulation
• High or rising cholesterol
• Acid reflux
• Poor levels of iron, B12, Vitamin D etc.
• IBS / gut issues
• Easy bruising
• Swollen legs that impede walking
• Frequent shin splints
• Difficulty standing on feet for long

and you get the picture of what it’s like.

So, you can imagine that sometimes, thyroid patients living with these have to cancel plans last minute, through no fault of their own.

When they have plans, they tend to look forward to it, as it can take their mind off their health condition or make them feel like they’re taking back some control. So if they then have to cancel, you can imagine how devastated they likely feel.

The next time you think they might be making up excuses, being lazy or being a cop-out, please realise that when this is their life, they have no real control and they are not to blame.

We didn’t choose to have thyroid disease.

Thyroid patients are not often understood by those around them. We’re made to feel like this condition isn’t a difficult thing to live with, as it is often not taken seriously. Most people think it’s an easily treated condition, when in reality, it is none of those things for many of us. We’re not hypochondriacs, it really does cause lots of symptoms.

Yes, for some thyroid patients they do OK on standard thyroid medication but for many, they still struggle.

Many patients struggle to actually get diagnosed for years, with doctors brushing it off as depression, chronic fatigue syndrome or fibromyalgia, among other things. Doctors regularly misdiagnose hypothyroidism.

Even when we are diagnosed and started on medication, we often find it takes some time to feel better, or that doctors will not consider another type of medication if the first one they try doesn’t work for us. A lot of us even have to turn to going private for our healthcare or sourcing the medication ourselves. So don’t assume that your friend, family member or work colleague is ‘OK now they’ve got medication for it’. Instead, please ask us.

Can you imagine how lonely we feel sometimes?

What we would like from you is to be the person who understands what we’re going through, and that even though it’s not a well-recognised disease, it is a real, difficult, life-changing condition. It often alters lives forever.

The best thing you can do is be there for your friend, family member or work colleague who has this disease; all we need you to do is listen, and learn about the struggles and challenges we face. We don’t expect you to know everything, but to be understanding and sympathetic when we are struggling.

You could help the thyroid patient in your life do as much as possible to improve their health, be it encourage them to seek out a doctor who will listen, or do research with them to learn more about how they can help themselves feel better.

When they read a new book, read it with them. Thyroid brain fog can make us forget a lot of what we read! Encourage them to pick up new thyroid books.  Be the person who helps them to find time for rest, self-care and time to enjoy what they love doing most. It might be helpful for you to read about other patients’ experiences, too. Ask us if we need help with anything and ask us how we’ve been feeling. It’s good to know someone cares.

If you live with a thyroid patient, don’t automatically expect too much from them in daily life. I’m not saying that all thyroid patients are incapable of doing anything, far from it actually, but rather that you shouldn’t expect them to do as much as they used to. Instead, let them rediscover their limits and stamina and have open communication about this.

You may have to take up more of the housework and take initiative on things that they used to be in charge of in order to help them recover. Tell them when they’ve done enough for the day and encourage them to rest. Bring them drinks, run them a bath, or simply ask if they need help getting up the stairs or putting their shoes on. Go with them to doctors appointments and help them get the right treatment for them. Encourage them to find online support groups and communities to meet others also living with the disease. Often experience and advice can be shared among patients, that is invaluable to helping make the condition that little bit easier to live with.

I have also covered how it may impact dating, here.

If you’re a doctor, please listen to your thyroid patients. It frustrates me that a lot won’t be open-minded. Please don’t assume the ‘one size fits all‘ T4-only medications will work for all of us. Listen to our ideas and suggestions and don’t make us feel small. Take time to explain things to us and give us time to explain everything to you.

Please be open-minded. Sometimes we feel intimidated by a medical professional, but when we do our own research we often would like to share our findings with you. Refer us to an endocrinologist or another doctor if you think they’d be more help to us. If we can find doctors who will work with us and listen to us, it would be the perfect solution.

Related post: 11 ‘Harmless’ Things Said by Doctors That Actually Hurt Thyroid Patients

Something as simple as reading this letter, means the world to us. It means a lot that you want to understand our situation and help us, or at least be someone we can talk and rant to, and rely on to listen to us when we’re having a hard day.

Rachel, The Invisible Hypothyroidism

Read more posts in the ‘Supporting a Thyroid Patient’ category

Thyroid patients: What else would you add?

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.

A Book for Our Children:

Thyroid Superhero: A Kid’s Guide To Understanding Their Grown-up’s Hypothyroidism, which helps children to understand their caregiver’s thyroid medication, flare days, symptoms and much more.

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The following links have been sponsored by Regain.US. 

If you are living with someone with hypothyroidism, do remember that there is support out there for both the thyroid patient and their family. As well as face to face counselling, online options are also quite popular right now. Regain.us offer online couples counselling that you can do in the comfort of your own home (perfect for when living with chronic illness). See: https://www.regain.us/advice/counseling/use-online-couples-counseling-to-get-your-relationship-back-on-track/ for more info.

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