Managing Congenital Hypothyroidism in Infants: Key Considerations for Parents

Congenital Hypothyroidism (2 months and 3 weeks old - male infant)

Dear Dr.
Lin,
First of all, I sincerely thank you for taking the time to read this lengthy message and for your follow-up questions! My child will be turning 3 months old next week and is currently undergoing treatment for congenital hypothyroidism.
Unfortunately, the THS index has risen again according to yesterday's report, and I am unsure how to care for my child, which is why I am reaching out to you.
My child was born in mid-July, weighing 3.6 kg and measuring 55 cm.
The newborn screening indicated a TSH level of 180, confirming congenital hypothyroidism.
On the 10th day after birth, we were called back for a retest, which showed a level over 300, and treatment began that day.
After more than a month (early September, 5.6 kg, 57 cm), following several adjustments to the medication, the levels were T4: 9.1, Free T4: 1.25, T3: 171.5, TSH: 4.640.
The doctor advised to maintain the current dosage and scheduled a blood test for early October, with a follow-up appointment in mid-October to confirm the levels.
However, during the two-month vaccination check-up for height and weight, I noticed an increase in weight (mid-September, 6.5 kg, 59 cm).
As a mother, my instinct was to worry about the significant percentage increase in weight and the possibility of insufficient medication, so I couldn't wait for the mid-October appointment.
I proactively scheduled a visit, and on that day, my child's weight was recorded at 6.2 kg, down from the previous 6.5 kg.
After receiving vaccinations, my child did exhibit some feeding aversion, but the doctor decided to keep the medication dosage unchanged.
Meanwhile, through a friend’s introduction, I took my child to another hospital for a thyroid gene test, which also included additional tests for TSH and related items.
Just yesterday (October 7, 6.9 kg, 62 cm), we had a routine blood test (the gene test results will take 2-3 months) and found that the levels had worsened, leading to an increase in medication dosage.
The bone age data is as follows: T4: 5.5, Free T4: 0.64, T3: 182, TSH: 156, bone age: 0.52 cm².
I would like to ask the doctor, since the levels were normal in the second month but have changed before reaching three months with an increase in TSH, will this have any impact? Yesterday, I felt guilty about my shortcomings as a mother.
Besides following the doctor's advice and referring to the child growth manual for each month's development, I would like to ask the doctor if there are any special considerations for caring for a child with congenital hypothyroidism.
Thank you for your valuable time.

Nan guo de mama, 30~39 year old female. Ask Date: 2020/10/08

Dr. Lin Yishou reply Pediatrics

Dear Parent, I understand your concerns.
However, there is no special solution; the best approach is to adhere to the medication regimen and monitor the blood levels.
If you have any worries, please discuss them thoroughly with the attending physician.
Thank you for your message.

Reply Date: 2020/10/08

More Info

Managing congenital hypothyroidism in infants is a critical aspect of pediatric care, and it is understandable that you have concerns regarding your child's health and treatment. Congenital hypothyroidism is a condition where the thyroid gland does not produce enough thyroid hormones, which are essential for growth and development, particularly in the brain. Early diagnosis and treatment are crucial to prevent developmental delays and other complications.

Key Considerations for Parents
1. Regular Monitoring: It is essential to have regular follow-up appointments with your pediatric endocrinologist. Blood tests to measure thyroid hormone levels (T4, Free T4, T3) and Thyroid Stimulating Hormone (TSH) should be conducted as recommended by your healthcare provider. These tests help determine if the medication dosage needs adjustment.

2. Medication Adherence: Ensure that you administer the prescribed thyroid hormone replacement medication consistently and at the same time each day. This helps maintain stable hormone levels in your child's body. If you miss a dose, follow your doctor’s instructions on what to do next.

3. Watch for Symptoms: Be vigilant for any signs that may indicate your child is not receiving adequate thyroid hormone replacement. Symptoms may include lethargy, poor feeding, constipation, dry skin, or a decrease in growth rate. If you notice any of these symptoms, contact your healthcare provider immediately.

4. Growth and Development Tracking: Keep a close eye on your child's growth parameters, including weight and height. Regularly compare these measurements against growth charts to ensure your child is growing appropriately. If you notice any significant deviations, discuss them with your pediatrician.

5. Diet and Nutrition: While your child is on medication, ensure they are receiving a balanced diet appropriate for their age. Proper nutrition supports overall growth and development. If your child is experiencing feeding difficulties, consult with a pediatric nutritionist for tailored advice.

6. Vaccination Schedule: Continue to follow the recommended vaccination schedule. Vaccines are crucial for preventing infections, especially in infants. If your child has any adverse reactions to vaccines, such as fever or irritability, inform your healthcare provider.

7. Genetic Testing and Counseling: Since you mentioned that your child underwent genetic testing, it is essential to follow up on those results. Understanding any underlying genetic factors can help in managing your child’s condition and provide insights into potential future health issues.

8. Emotional Support: Caring for a child with a chronic condition can be overwhelming. It’s important to seek support from family, friends, or support groups for parents of children with congenital hypothyroidism. Sharing experiences and advice can be beneficial.

9. Education and Resources: Educate yourself about congenital hypothyroidism. Understanding the condition can empower you to make informed decisions about your child's care. Resources such as the American Thyroid Association or local support groups can provide valuable information.

Conclusion
It is completely normal to feel anxious about your child's health, especially when faced with fluctuating hormone levels. Remember that you are not alone in this journey, and there are healthcare professionals dedicated to supporting you and your child. Regular communication with your healthcare team, adherence to treatment, and monitoring your child's growth and development are key strategies in managing congenital hypothyroidism effectively. If you have any further questions or concerns, do not hesitate to reach out to your pediatrician or endocrinologist for guidance. Your proactive approach to your child's health is commendable and will contribute significantly to their well-being.

Similar Q&A

Understanding Congenital Hyperthyroidism in Newborns: Causes and Prognosis

Hello Doctor: My nephew had a newborn screening, and his thyroid levels were elevated. The doctor said he needs to take medication until he is 6 years old. Is this what is referred to as congenital hyperthyroidism? My sister-in-law does not have any thyroid-related diseases; why ...

Dr. Pei Rensheng reply Pediatrics
Dear Ms. Chen, Hello, I believe your baby may have congenital hypothyroidism, which is a condition characterized by a deficiency of thyroid hormones at birth. Approximately 1 in every 4,000 newborns has a severe defect in thyroid function, while many others may have mild or vary...

Understanding Congenital Hypothyroidism in Infants: Impact and Care

My little nephew was initially diagnosed with congenital hypothyroidism during newborn screening at birth. What impact does this congenital condition have on the child's brain development? When is the best time for treatment? How should the child be cared for? What is the pr...

Dr. Huang Zheming reply Pediatrics
Congenital hypothyroidism is characterized by a deficiency of thyroid hormones, which affects brain and physical development. If not detected and treated promptly, it can lead to intellectual disability. Treatment administered within the first 1-2 months after birth can allow for...

Understanding Congenital Hypothyroidism in Infants: Key Insights for Parents

Hello Doctor: Our younger brother had a very high bilirubin level at birth and underwent phototherapy for several days. After that, his thyroid function tests showed increasing levels over three blood draws: the first was in the teens, the second spiked to the sixties, and the th...

Dr. He Shenglong reply Pediatrics
Hello: If hypothyroidism is detected early and treated promptly, the appearance and intellectual development will progress more smoothly. Parents may naturally be concerned, but I recommend discussing this thoroughly with your brother's attending physician (a pediatric endoc...

Understanding Congenital Hypothyroidism in Children: Treatment and Growth Impact

Dear Dr. Hsiao, Pediatrician: How is congenital hypothyroidism (TSH) treated? What is the impact on a child's growth in the future? Is it possible for them to fully recover their health? As a father, I am very worried. Please help me address my concerns. Thank you.

Dr. Xiao Kaiwen reply Pediatrics
Current newborn screening includes this item. If the initial screening shows abnormalities, the patient will be notified for a retest or may undergo direct blood sampling for confirmation. If diagnosed with congenital hypothyroidism, long-term thyroid hormone replacement therapy ...