Growing up with congenital hypothyroidism
The first year of congenital hypothyroidism is often the toughest for parents. But once your baby is growing, hitting their milestones and responding well to treatment, you might feel relieved.
But what happens now? You might wonder what the years ahead will look like, what to expect as they experience growth spurts, and whether they will need life-long management.
Let’s explore what long-term care of congenital hypothyroidism looks like, and how you can support your child through each stage.
Can my child grow out of congenital hypothyroidism?
It depends on the case.
Some babies are diagnosed with what is known as transient hypothyroidism. This means the issue will resolve over time. It’s typically caused by factors such as maternal antibodies, iodine deficiency or medication use during pregnancy.
But others have a permanent state of hypothyroidism. This is because the thyroid gland is missing, underdeveloped or unable to make sufficient hormones long-term.
Your doctor will review your child’s congenital hypothyroidism diagnosis to decide which of the two is the case. This will usually happen around age 3 by temporarily pausing medication and a blood test to evaluate whether their thyroid hormone levels are impacted.
Continued care of congenital hypothyroidism
So what if your child still needs medication after evaluation? There are a few things to expect over their childhood and teen years, including:
Regular blood tests – usually every 6-12 months, with more frequent testing during growth spurts and puberty
Dose adjustments being made based on their weight, development and blood results
Specialist reviews during peak transitions such as puberty if needed
The good thing is the medication itself will remain the same. If your child is not converting T4, your specialist may consider adding T3 in as well.
Supporting your child’s development
A big concern for many CH parents is whether the condition may affect their child’s ability to learn, grow and behave.
When CH is well-managed, children will typically develop normally, with no real concerns. However, because their needs are constantly changing, it’s still a good idea to:
Keep an eye on their concentration, memory and mood
Monitor for symptoms such as fatigue or low motivation
Check in regularly with childcare providers and teachers
Seek support if something feels off or you’re unsure
You’ll also want to remember that your child may feel different because of their condition. Your best bet is to normalise their experience and be open to any questions they may have. If they are struggling, it may be worth working with a counsellor to help them understand how they feel and why having a health condition is not a bad thing.
What about puberty and hormones?
No matter whether your child has a health condition or not, puberty brings many challenges into the mix! You’ve got physical changes, emotional rollercoasters and hormones running wild.
But from the perspective of a teen with congenital hypothyroidism, this may mean:
Closer monitoring of thyroid hormone levels
Watching for symptoms of thyroid imbalances such as sudden weight gain or weight loss, fatigue, temperature dysregulation and mood concerns such as depression
Reassessing their dose based on body changes such as the start of menstruation
Extra support around emotional regulation, body image and confidence
You’ll also want to start to guide your teen about how to understand their medication, track their symptoms and speak up about their needs.
Letting them take the wheel
As your child gets older, it will reach a time for them to take over some, then all, of their thyroid care. But it doesn’t have to happen overnight – you can take it one step at a time.
Some ways to ease into the transition include:
Involving them in their health appointments
Letting them organise their medication, and then take their medication themselves (hot tip: for teens, you might want to encourage an alarm or app reminder to keep them on track!)
Allowing them to take reasonable risks and the consequences, such as organising their medication for a school camp (if they forget, a few days without won’t hurt them, but it will make them tired and miserable!)
Discussing with them how risky behaviours such alcohol, smoking, vaping and drug use could affect their condition
You can also consider connecting them with an older role model with a thyroid condition, so they can learn how to navigate their condition as an adult.
And finally, it’s important to remember: your support matters, no matter what your child’s age is. There is no one ‘right’ way to parent a child with a chronic condition, and each case is unique. As long as you’re listening to your child, helping them to feel safe, and trusting your gut, you’re doing exactly what you need to do.