My infant son- Hyper/Hypo Thyroidism?

[Wendy HS]

My newborn son had his 2 day and 2 week screening just come back from the midwife and the pediatrician sent him for more tests for Hyper/Hypo Thyroidism.  Is there a Hyper and a Hypo or are they one in the same? What scares me is that he is now 5 weeks old and they are just now getting to this. I've read on line that it can cause mental retardation and other problems if you don't get them on medication. Is it safe for them to have waited this long to deal with it? They are telling me the test results won't be back until Tuesday and Thanksgiving is Thursday so he will have to wait another week for anything to be done. How important is it to get something done now? The only two symptoms that he seems to have is he has the prolonged jaundice (his billirubin is at safe levels, but he hasn't changed much in his yellow color since the last test over a week ago) He is gaining weight and growing, but he does at times seem harder to wake up than what I remember my other two babies. At night especially I have to wake him up to nurse him sometimes, otherwise I think he would sleep throught the night without waking. My other two babies woke up religiously every 2-3 hours all night long. Anyone else had an infant with this, but didn't get treatment for the first month. I am just worried about waiting too long. Thanks for any help.

[GoBecGo]

Hyper is overactive, hypo is underactive.  Both can be problematic.  I think the PKU (Guthrie/heelprick) checks for hypothyroidism, and in cases where the results are borderline they do subsequent tests to diagnose properly before medicating.

It sounds from what you say (persistent jaundice, bit sleepy) he might be hypothyroid, but if his results were startlingly poor they would be medicating him by now, so try not to panic.  If he is eating and gaining and growing then he is developing.  I have a perfectly healthy baby who has slept right through since birth (shortest sleep was 5 hours on her birthday, usually 7-9 hours since then), so that might not even be relevant (i too had one which fed every 2-3 hours all night last time around!).

The more serious the condition the higher the risk of retardation.  But if the results of the newborn screening had been abnormal they would surely have been picked up on already, and this continued testing makes me think he's maybe borderline and they're trying to get a proper picture, OR that he was normal at PKU testing, but the continued jaundice is making them wonder if more is going on and thus they are testing for the most obvious culprit.

Hang in there mama!

[Wendy HS]

I am trying not to worry.  I know his newborn screenings came back with them thinking something was wrong with his Thyroid, I am unsure of what the numbers are because I didn't see any of it. My midwife just got the results right about the time my son turned 1 month old. She faxed it to the pediatrician the same day and the pediatrician ordered the further tests. They called me that evening and wanted me in the next day to get the blood drawn, but they didn't say anything to me about doing anything yet.  I am the one who keeps pointing out the jaundice to the pediatrician. He's had it for so long now and it is not getting any better. I didn't even realize until I did some research that Jaundice was a sign of problems with the thyroid. He nurses fine, he is growing and gaining weight, and he is strong (already holding his head up on his own). I guess I just worry about irreversable damage being done while we are waiting to see what is going on. I will call the Pediatrician tomarrow and try to find out what range he is in, that may at least put my mind at ease and help make it easier to wait for the results. I am glad to know that him sleeping longer at night is normal. I've breast fed all my babies and I've always been told they need to wake up and nurse every 2-3 hours. He is growing a lot and appears to be getting plenty of breast milk so I won't worry to much about that. Thanks so much.

[GoBecGo]

I'm not sure what the normal timeframe is, but i wasn't told until DD's 6week check that the PKU was normal so "as soon as possible" needs to be given that context - if it takes a month for ALL the newborn screenings to come back then right now IS "as soon as possible", and other babies are not likely to be treated faster if that makes sense.  Given that context i expect it means they should investigate and treat any potential thyroid issues on the basis of the first screening and not leave it 6 months.  With adults all but very severe hypothyroidism is debilitating but not life-threatening/profoundly damaging (i've got adult hypothyroidism, Hashimoto's thyroiditis).  With kids because they're growing so fast it's much more critical, but a lot of what i've read indicates that mild problems (like growth retardation and mild developmental retardation, which it's unclear if your boy has since he IS growing and meeting developmental milestones (holding head up)) tend to resolve spontaneously once the baby is treated appropriately.

It's funny what you say about nursing.  I too was told with DD1 that breastfed babies MUST be woken every 3 hours (minimum) to feed.  I remember at the time thinking it was crazy that BFing mums were being told to wake up even if the babies were sleeping when the FF mums were being told the formula would make them sleep longer, and the whole world seems to ask "does s/he sleep through" as a marker for a "good" baby/family/parenting technique.  DD1 i did wake religiously every 2-3 hours to feed (and i ended up with sleep deprivation psychosis) but when DD2 came along i was too exhausted (recovering from birth plus DD1's anxiety about becoming a sibling manifested in waking 2-3 times every night, which meant if i also woke the baby to feed it i was literally not getting more than 70mins sleep at a stretch) to "obey" the wake-to-feed dogma, and you know what, she has always slept right through and when i compare growth charts she weighs pretty much exactly what her sister did and is developing slightly faster (possibly all that good sleep!).  I do think in your place, with a jaundiced baby, i would wake to feed, since sleepiness is a possible side-effect of jaundice, but once it resolves (and it will i'm sure) you might still find he's a boy who loves his bed :)

[Wendy HS]

I am very happy to report that they said his numbers came back normal this time, so no hyper/hypo thyroidism. Thank God!!!! I talked with the nurse about the jaundice and she said it could be normal for him to be jaundiced this long. I am not as worried about him sleeping now that I hear other BF babies do that too. I've always heard to wake them up, but I can understand in your case how you wouldn't want to. It is absolutely exhausting to do that every 2 hours all night long and then to be up with a toddler all day. Everyone says sleep when the baby sleeps, but you can't very well do that with a toddler running around. I still can't seem to get all mine to take a nap at the same time. Thank you for your comments, it really did put my mind at ease about everything. It will sure be nice if my little guy ends up being a boy that loves his bed!!!