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Dealing with Neonatal hypothyroidism


It's not the worst illness for your child to get

Its lifelong

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28 Ciao members have rated this review on average: very helpful See ratings
very helpful by (98%):
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  2. vikkisbest
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I am writing this on the offchance it may assist others.
My daughter has neonatal hypothyroidism...sounds scary doesn't it? well it did the first time we heard it. Anna was just 2 weeks old when we were first sent to Alder Hey.

All babies have a hell prick blood test within the first week of life. This test looks for 2 different things...first the PKU (phenoketourin i think but don't quote me) which is an inability to digest milk protein, and thyroid issues.

A week after her test and me having forgotten all about it I was shocked to be called to Alder Hey childrens hospital regarding her thyroid.

Once there further tests were conducted and the diagnosis confirmed.

You can expect your child to undergo an ultrasound, firstly a dye is injected and time allowed for it get to the thyriod, be prepared its not a pleasant procedure and in small veins it can be difficult, it may result in them needing to go in through a vein in the scalp...if offered this choice jump at it..its quicker and easier in most cases but can leave a bruise.
Once the dye has worked its way round you will be taken in for the scan, your child will be laid on the table and the scanner lowered to their neck area (watch out if the baby is breastfed as he/she will probably try to latch on to the camera!)

The scan will check the size, shape and cell count of the thyroid.

A TFT (thyroid function test) will also be performed, this is a blood test and will check the levels of thyroxine in the blood.

If you child is diagnosed with hypothyroidisim (the neonatal part means simply "from birth") then you will be advised of the amount of thyroxine to give on a daily basis.

Ok so its confirmed, you are at home and have the thyroxine. Remember that it needs to be given at roughly the same time each day and that the correct doseage should be administered....if left untreated then your child could develop cretinism but if treated then no obvious differences will be seen.
Your child will need TFT's at your local hospital..frequency depends on age.
0-12 months- once per month
12-24 months- once every 2 months
3-5 years- approx once every 3-4 months
Remember that when your child experiences a growth spurt its always wise to have an extra test if its a while off your next is due.

Every 3 months during the first year, and every 6 months from then on your child will see the paediatric endocrinologist (specialist in childhood hormones) for a check up.


If your childs thyroxine is low and the doseage needs amending these are signs you will probably notice:
Dry, flaky skin
Excessive sleepiness (and it can be quite excessive indeed!)
Increased hunger (pre-weaning you will also notice their suckling pattern changes and breastfed babies may be lazy with their latch)

Remember that other things (such as teething, common colds etc) can also cause some of the above but use common sense and eliminate them. If unsure continue with doseage and monitor, if no change then get booked in for another tft.

To administer the thyroxine to young babies you will need to crush the tablet between 2 spoons and mix with a little milk, you can use formula or EBM.
If using EBM I found its easier if you use purely the hind milk (I guess it masks the taste better).

Your baby will need an empty stomach to take their thyroxine and it will need to be empty for another 15mins after administration, this allows the thyroxine to be absorbed so if your baby is sick or possetts some of their milk you still know their medication has been taken correctly.

I found it best to give Anna her thyroxine in her cot before getting her up in the morning..it marks the morning for her and once given I can distract her with getting a clean nappy before she can have brekkie. I did find this helped her settle into a routine well. Also its best in the mmorning as it can make them more active if given at night and you want to encourage regular sleep patterns!

Its quite hard to get a very young child to take milk from a spoon as they don't know how to do so but they learn quickly. I used to use 2 spoons..one small teaspoon to pour the milk/tablet mix in and a dessertspoon below it to catch what her tongue pushed out! On a positive note you will find weaning a cinch as your baby will by that stage be well accustomed to taking something from a spoon.

Well thats as much as I can think to write, I doubt many people will have use for it (only 1 in every 4000 babies has it) but if you do want any specific questions answered leave me a message and I shall endeavor to help.
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Comments about this review »

vikkisbest 01.02.2006 18:28

this iss scary i know my children are tested offtern for this as i myself have hypothyridism the heath test when a baby is young is yes to test for this and also for pku wich is also in my family this not just for milk protien but all protien great review vikki

thespurs 14.11.2004 17:04

nice review. very informative indeed, not something i can say i had heard of

smileybabe 11.03.2004 00:37

Wow I hadn't heard of this before, I'm glad mine didn't have this condition. Hope all is well with Anna now :o)

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This review of Member Advice on Hypothyroidism has been rated:

"very helpful" by (98%):

  1. paulpry118
  2. vikkisbest
  3. thespurs

and 52 other members

"helpful" by (2%):

  1. flooda

The overall rating of a review is different from a simple average of all individual ratings.