Transient congenital hypothyroidism and pediatric endocrinologists

Just back from an early-morning appointment with the good old pediatric endocrinologist--exciting stuff, let me tell you!  Although I haven't mentioned it on the blog before, we deal with pediatric endocrinologists, crushed up Synthroid tablets, TSH and free T4 levels, and blood sucking lab needles around here from time to time.  But don't worry, it's really not nearly as impressive as it all sounds.  Basically we have been monitoring Leaf's thyroid stimulating hormone (TSH) levels since birth, because his newborn screening tests revealed he had slightly elevated levels of TSH running through his little body.  Basically that means that his thyroid was not producing enough of the extremely important thyroid hormone, so his pituitary gland had to compensate by producing extra TSH.  (In a nutshell, high TSH levels mean the pituitary gland is doing some of the work for the thyroid, which means there's a problem with the thyroid).

But, the thing is, nobody is sure whether or not there really is a problem with Leaf's thyroid.  His original screening revealed that his TSH level is "borderline"--right at the cusp of the higher end of normal and a little bit too high for comfort.  It's in that gray area where his pediatrician says "Oh, his TSH level is fine, you don't need to do a thing."  And the pediatric endocrinologist says "Just to be on the safe side, you should treat him as you would a hypothyroid baby--i.e. give him Synthroid and monitor his TSH levels on a regular basis." We went with "the safe side" because the the thyroid is directly responsible for brain development and the ramifications of not treating congenital hypothyroidism early on can lead to irreversible developmental problems (specifically mental retardation).  As a matter of fact, treatment for congenetal hypothyroidism should begin within the first three weeks of life, as the brain develops so rapidly in the early days that if left untreated, irreversible damage may already have occurred.  After being assured and reassured that the 25 mcg of Synthroid prescribed to Leaf would have absolutely no negative side effects on him even if he didn't really need it, we started treatment right away.

All of Leaf's lab work has been completely normal thus far and all of his pediatric endocrinologist appointments have been very positive.  We've had several appointments with two different doctors in two different cities and they both seem to think Leaf is completely "normal" (aka--he does not have and never did have hypothyroidism or he possibly had transient hypothyroidism--i.e. maybe his thyroid gland was out of whack for a week or two when his original screening was done).  Now let me tell you, I am a researcher by nature and I question everything.  So at our appointment today, among my many questions, I asked the doctor (as I do at every appointment), "Is there anything, anything at all, even a tiny little thing, that would make you think Leaf has hypothyroidism?  Any physical or behavioral characteristic? Anything?"  And he replied, like he has in previous appointments, "No, nothing at all."  He even seems to think it could all be just a simple lab mistake!  

But, to be "on the safe side" we are to treat him until he is just over a year old.   If a baby is born with hypothyroidism, treatment generally lasts forever.  In Leaf's case, however, we are going to stop Synthroid treatment when he is just over a year, get all of the Synthroid out of his system, double check his TSH level, and go from there.  If the lab work reveals his TSH is still high, we will continue to treat him, but of he gets a clean bill of health, Synthroid will happily go out the window!  And when I say happily, I mean happily!  Ian and I hate (and although I don't like to use the word too often, I do mean hate) pharmaceuticals and we absolutely loathe that we have to give one to Leaf, especially one we're not even sure he needs.  Here's to hoping we'll only have to see Synthroid on our shelf for a few more short months!!!!

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