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Worried mother with a baby diagnosed with congenital hypothyroidism

By Anonymous March 26, 2013 - 10:37am
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120-day-old baby diagnosed congenital hypothyroidism, receiving T4 treatment since 20 days after birthing.
Is it a life time treatment? What is the side effcts of the treatment?
diet suggestion for breast feeding mom? food restriction?
alternative treatment? Is soy and dairy based formula not good for the treatment?

W. Latespring

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I was diagnosed at 3 weeks in MA back in 1978 as part of the study that they used to get the state to screen all infants. I'm 34 now and I have no symptoms when my levels are normal and no learning disabilities. As a child, I had a pediatric endocrinologist and a regular pediatrician, and things were fine. Every once in a while a test would be slightly high or low so they would adjust my dose and retest six weeks later. Now, I'm on Levothyroxine - I alternate between 150 and 175 every other day. The only times I have symptoms are when my levels are off, and that's when I know it's time to get them checked (I get them checked yearly anyway). My mom says that she FREAKED when she heard about it because back then all she had for resources were extreme cases with pictures of babies with enormous goiters.
I can't have soy in the morning after I've taken my pill even now or my levels drop. (I was eating soy protein bars for breakfast for about a month and that was just a bad thyroid scene...) I've read that you're not supposed to give babies formula with soy within 1-2 hours of a L-T dose.
It really is a lifetime condition, but not one that is going to severely interfere with her life. It just means she'll have to take a pill every day and make sure to watch for things like fatigue and weight gain when there isn't another explanation for them.
~ Leslie

April 1, 2013 - 4:08pm

Hello W. Latespring,

This news must have been overwhelming and I can appreciate your concern.

Congenital hypothyroidism is a condition that affects infants from birth and results from a partial or complete loss of thyroid function. The thyroid gland is a butterfly-shaped gland located in the lower neck. It produces iodine-containing hormones that play an vital role in regulating growth, brain development, and metabolism.

This condition occurs when the thyroid gland fails to develop or function properly. In 80 to 85 percent of cases, the thyroid gland is absent, abnormally located, or severely reduced in size.

If untreated, congenital hypothyroidism can lead to intellectual disability and abnormal growth. If treatment begins in the first month after birth, infants usually develop normally.

A synthetic form of thyroxine, which is one of the iodine-containing hormones produced by the thyroid gland, is prescribed and administered as treatment. Blood tests are regularly done to make sure thyroid levels are in a normal range.

There are no side effects as long as thyroid levels do not become too high. The benefits of treatment are normal intellectual and growth development.

Yes, it is a life time treatment. There is no alternative treatment. Choosing soy over dairy based formula, or visa versa, has no impact on treatment.

I think you should follow the recommendations for every breastfeeding mother. Eat a well-balanced diet, choose good fats, drink plenty of water, limit caffeine and alcohol consumption, keep taking your vitamins and take extra steps to avoid contaminants, such as undercooked poultry.

I hope that I have answered your questions.


March 26, 2013 - 5:01pm
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