PKU. Are mistakes common?

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Forum -> Children's Health

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amother

Fri, Aug 23 2024, 4:04 pm

My sister had a baby girl 3 days ago PKU results show hypothyroidism. There is not family history whatsoever of this. The hospital wants to repeat the test. Meanwhile my sister is beside herself with worry. Anyone had experience with wrong result? I personally did have to redo it by my son due to too little blood taken for testing. Please share if you had wrong result experience. Thanks

oneofakind

Fri, Aug 23 2024, 4:09 pm

I've heard of it being inaccurate if taken too early - if mother was leaving hospital before a certain time had elapsed.

tweety1

Fri, Aug 23 2024, 4:29 pm

I had with one kid that it had to be retaken. The excuse my pediatrician gave me was that it was probably taken before 24 hours. If taken before 24 hours a false positive is fairly common. Problem was I knew for certain that my baby's test was taken at 27-29 hours old. Needless to say I couldn't breathe from nervousness. Bh I don't remember which kid it was......

Hashem_Yaazor ↓

Fri, Aug 23 2024, 4:43 pm

I know someone with this, no family history, not inaccurate test, and the only change in her life is she takes medication daily and has endocrinologist appointments from time to time. Really nothing life altering BH.
Also while it may be accurate at this stage, it's also possible to outgrow by 3.

amother

Banana

Fri, Aug 23 2024, 6:05 pm

Isn’t PKU for phenylalanine break down
Or the inability to break it down? What does it have todo with thyroid

amother

cornflower

Fri, Aug 23 2024, 6:07 pm

amother Banana wrote:

Isn’t PKU for phenylalanine break down
Or the inability to break it down? What does it have todo with thyroid

The original newborn blood test was just for PKU. Now they added a dozen or more other diseases to the panel that should be treated immediately. This baby tested positive for hypothyroidism. Hopefully it's just a false positive which does happen. If not, it's an easily managed condition if you catch it right away. And they caught it right away.

amother

Mistyrose

Sat, Aug 24 2024, 9:26 pm

I have hypothyroidism and my son tested positive but retested at 2 months and BH was ok

amother

Antiquewhite

Sat, Aug 24 2024, 9:27 pm

amother Banana wrote:

Isn’t PKU for phenylalanine break down
Or the inability to break it down? What does it have todo with thyroid

This. What am I missing?

↑ Hashem_Yaazor

Sat, Aug 24 2024, 9:35 pm

Read cornflower's post.

amother

Wheat

Sat, Aug 24 2024, 11:38 pm

this.
had one kid that needed repeat blood work when we came home and was fine bH.
another is actually on synthroid but it's so not a big deal. might yet outgrow it - still a toddler.
at first I was beside myself, till I realized there are day worse things out there.
bH we have these meds - their lack used to cause delays in development and now bH can avoid that.
also administering the meds is painless. there are conditions with interventions that are far more uncomfortable or painful.
IyH her child will be fine!

Hashem_Yaazor wrote:

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