Late Diagnosis of "congenital" hypothyroidism

[DeeDee514]

Today, our 16-month old baby was diagnosed with "probable" hypothyroidism.  I am having a little difficulty getting the doctor to explain about the possible mild retardation and other permanent effects.  She has said we have to wait and see.  The first set of tests done by the pediatrician were T4 5.9 & TSH 6.19  and the second set were ordered by the ped. endo.and completed at a different lab and they were T4 7.2 & TSH 2.59.  We have to wait on the free T4 to come back in about a week, but as a preliminary step she placed her on .025 Levothyroxine once per day.  We are well aware of the baby's delayed physical & developmental milestones.  We just want to know what the likelihood is that she will have suffered irreversible brain damage.  I am on the web and everything I am reading seems to be doom and gloom, not to mention the retardation and possible late diagnosis.  Please share your insights because I need to know something a little more tangible while we wait for time to deliver the true diagnosis.  Thank you.

[Barb135]

This thread is so old, it's unlikely you will get a response.

[xiulink]

hello.. i read ur post in medhelp about ur baby's hypothyroidism.
now she should be 4 years old, right ?
how is she doing now, physically & mentally developing ?
my 15-months babygirl was diagnosed hypothyroidism last month, late disclosure. now she's having euthyroxine 2 times a day, 2,5microgram each dose. also being in therapy for her physical development. fortunately, her brain develop as well as other child in the same age. though mental development still below standard, looking from vocabulary n social contact with parents.
when she was 10-months old and still not crawling or sitting, our pediatrics diagnosed her global motoric delay & hypotone. no medication treatment was given, only therapy by parents. after 4 months not increasing, she had MRI scan and found normal.she began hormone therapy & physiotherapy on 14months. after 2 weeks, doctors evaluate and results very good. we keep on both therapy until now.
i feel the same as you were, wonder about her years ahead, how she will grow mentally & physically. doctors said she should have hormone taken for the rest of her life, don't know how long the physiotherapy should be done.
hope your child's progress can give me more knowledge, so i can do my best for my daughter.
looking forward for your reply.
thanks before.
God bless u