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 causes weight gain and is an excuse people use for being overweight. 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 it this a legitimate symptom.
Your thyroid gland is located in the neck and is in charge of your metabolism and energy, and because of this, so many functions of the body rely on it to work properly. 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.
Think about when you’ve had the flu, and how tired and achy you felt. How frustrated, fed-up and useless it made you feel. How hard it was to get much done or function fully. Thyroid fatigue is also horrendous. Now imagine waking up every day feeling like that, but having no choice but to work, run a family, 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
- 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
- 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 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 easily understood by those around them. We’re made to feel like this condition isn’t a big thing to live with. It is often not taken seriously. Most people think it’s an easily treated condition. When in reality, it is none of those things. We’re not hypochondriacs, it really does cause lots of symptoms.
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 put up with.
Many patients struggle to actually get diagnosed for years, with doctors brushing it off as depression, chronic fatigue syndrome or fibromyalgia. 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. There are a few different options for treating hypothyroidism, but most doctors have a one-size-fits-all approach to treating it, and just prescribe the one, refusing to consider anything else. A lot of us 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’.
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. Don’t expect them to be able to do everything they used to be able to do before diagnosis, and don’t expect it to be an easy and quick journey for them to get back to good health. You will probably have to take up most of the housework and take initiative on things that they used to be in charge of. 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 on-line 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.
Rachel, The Invisible 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.
Written by Rachel, The Invisible Hypothyroidism
Rachel is a Thyroid Patient Advocate and Expert with Six 2018 WEGO Health Award Nominations. She is a highly ranked writer appearing in the Top Hypothyroidism Websites and Top Thyroid Websites 2018. Currently studying for relevant qualifications and certificates in Life Coaching, Diet and Nutrition, Reflexology and more, she has worked with The National Academy of Hypothyroidism, The BBC, The Mighty, Dr. Hedberg, Thyroid UK and ThyroidChange, to name just a few. She is well recognised as a trusted and useful contributor to the thyroid community.