A Letter to Those Who Know Someone With Hypothyroidism

Hello friend, family member, work colleague or doctor of someone who lives with an underactive thyroid or hypothyroidism. You know someone very brave, very strong, battling a difficult 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. But this is far from what it really does to someone. In reality, hypothyroidism (another word for an underactive thyroid) 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 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 hormones in our bodies. If we don’t have these, it affects our energy levels and lots of other things, especially things you probably don’t even think about. For example, 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, 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 for all thyroid patients. 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.

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 every day tasks difficult or impossible for a thyroid patient.

The best way I can describe hypothyroidism symptoms is by comparing it 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 on life. Combine it with all of these symptoms here:

• Constipation and/or wind often
• Depression
• Slow movements, speech and thoughts
• Itchy and/or sore scalp
• Muscle cramps
• Dry and tight feeling skin
• Brittle hair and nails
• Pain, numbness and a tingling sensation in the hand and fingers (carpal tunnel syndrome)
• Numbnes in limbs
• Irregular periods or heavy periods
• Brain fog/confusion/memory problems
• Migraines
• Hoarse voice
• A puffy-looking face
• Thinned or partly missing eyebrows
• Itchy eyes
• Poor stamina
• Long recovery period after any activity
• Arms feeling like dead weights after activity
• Inability to exercise, or withstand certain exercises
• Being overly emotional
• Inability to tolerate cold – cold hands and feet
• Poor circulation
• High or rising cholesterol
• Acid reflux
• Easy bruising
• Swollen legs that impede walking
• Shin splints
• Difficulty standing on feet
• Joint stiffness and pain
• Fertility issues

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 to do something, 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 on you due to hypothyroid symptoms and struggles, 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 realize 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 often not easily understood by those around them. We’re made to feel like this condition isn’t a big 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 patients. 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.

Even some of our friends, family and work colleagues (this could be you) overlook how serious it is, and how detrimental it can be to our lives. Even some doctors look at it like this. Not all, but a lot. A lot more than we should have to experience when fighting to regain some quality of life.

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 medicine 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 medicine ourselves. So don’t assume that your friend, family member or work colleague is “OK now they’ve got medicine for it.” Instead, please ask us.

Can you imagine how lonely we feel sometimes? Alone in our struggles and feeling like no one understands?

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 destroys, changes and alters lives forever.

The best thing you can do is to 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! 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 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. 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. 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 networks 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.

If you’re a doctor of a thyroid patient, please listen to them. I don’t by any means hate doctors, but it frustrates me that a lot won’t be open-minded. Don’t assume the one-size-fits-all T4-only medicine will work for them. Listen to their ideas and suggestions and don’t make them feel small. Take time to explain things to us and give us time to explain everything to you. Read books we suggest and 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.

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.

Follow this journey on The Invisible Hypothyroidism.