Thyroid Disorders Community
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Infant Diagnosed with Congenital Hypothyroidism

My daughter was born 5 weeks premature. She was in the NICU for 14 days so when her newborn screening test came back abnormal, no one was concerned enough to tell us because of her other medical problems with prematurity. After she came home and we saw our pedi for the first time (around 3 weeks old), he told us about her abnormal screening and recommended we get her blood work tested again.
So we did, and we found out that her TSH level, during the first test, was 16, and this time was 8. Her T4 and T3 were normal and she was growing very well. My daughters pedi was very confused. He thought it was possible that her levels were high because of the stress of being premature. So, we waited 3 weeks and had more tests run. Her T3 and T4 were still normal and her TSH has jumped up to 11. So we waited another 2 weeks (during this time we were waiting to be seen by a pedi-endo but were having horrible luck getting in), and yet again her T3 and T4 were normal but her TSH was 9.
We finally got in to see the pedi-endo and he was very cold and unfriendly. Also, very unwilling to take the time to explain anything to us. This is where my questions come in. He put her on Levoxyl 25 mcg once a day.
We started her on it on Nov 18th and after about 5 days, we noticed a change in her behavior. She just seems so unhappy all the time. She is always crying and is clingy and wants me to hold her all the time. She is almost 5 months old and so I know my daughters behaviors and this is NOT like her.
I am so worried and do not know what is going on with her. I do not know if this is normal and I do not know what to do for her. Her sleeping is also different. She used to be able to sleep through anything and now, the drop of a pen can wake her up. Shes so sensitive to things now.
Please help me understand what is happening to my daughter!!
2 Responses
219241 tn?1413537765
I am so sorry to read of your baby's troubles.

One thing that has to be noted here is that the infant levels are NOT the same as adult levels. Just a reminder for others reading this post.
(Also it is vital that the medication not be given with a soy infant formula. This is very detrimental to the medication.)

Her dosage may be too high, as in an adult, who then experience hyperthyroidism. Her hyper state makes her edgy and clingy and wakes at the pen drop as you say.

It is imperative she be checked again and see what her levels are now. Her dose sounds too high for an infant.

Be persistent in getting her checked out. Even if you have to take her to an ER. Fresh eyes can often see the situation better. It sounds like the doctor you have been seeing is very disinterested.
Avatar universal
My story is very similiar.  Baby Boy is now 4 months and we were told at about 2 months that 2nd Newborn screen was ok.  Now he is in the 7th (10th before) percentile in weight so they repeated the TSH, T4.  TSH is now 9, T4 normal range.  I'm worried about the lack of treatment since birth causing developmental problems?  I have been told the results of labs by the nurse today, but Doc is out until tomorrow... Very worried.  Also, confused as to why it was normal now not?  
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