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Thyroid UK
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Hypothyroid first result positif and second result came back negative but my 1 year old baby now is having delay

Hallo My son was diagnosed with congenital hypothyroid when he was born and then we did another check before he was 1 month, the result came back negative.

My son is now 13 months and he is very late. He is not sitting and crawling not lifting his arms when tummy time. He has difficulty with hands coordinating so he can't feed him self. What i know now that he is having low muscle tone hypotonia.

We did another check for him a weeks ago. My question is if he does have hypothyroid problem is the medication still effective and make his growth as normal as any other baby. Whats the cause that make the result is changing like that. Hopping for your response.

Kind regards

6 Replies

I am sorry you are in a predicament and worry about your little baby.

I am not sure how they treat babies with hypo but I would have thought he should have been started with levothyroxine when first diagnosed.

Was you baby only given two tests at birth, i.e. one that confirmed hypothyroidism (no treatment?) and a second one that was negative?

I don't want to worry you but you are seeing signs/symptoms in your child he may have been misdiagnosed the second time. Normally, once we have a positive test we begin on treatment immediately (I am talking about adults) so assume the same is for a baby.

I also must state I'm not medically qualified but all babies, as far as I am aware, who are hypo at birth are given thyroid hormones immediately.


Thanks for your replay. Yes the second test was for make sure again but it came back negative. I'm new about this thing and since i live in the netherlands and not fluently speaking dutch so I didn't know the procedure here. But im glad finally see this group to talk about it further.

The mistake was when they called us for the second result we didn't discuss about it I didn't even see the paper. But the 3rd result is coming tomorrow and i want to ask them clearly.

Do you think this is not too late for his treatment in his age?


I would definitely consult a doctor immediately as you seem to be aware baby isn't progressing as usual.

It is not unusual for hypothyroidism to be wrongly diagnosed but I would have thought paediatricians would be very careful to make sure. BUT mistakes can be made and that is the first thing you must be certain has not happened.

Your baby - and I assume tests are similar - should have TSH, T4, T3, Free T4, Free T3 and thyroid antibodies tested. The test is best early a.m. as the TSH drops throughout the day and he should have an empty stomach i.e. food should have time to be digested as it can interfere with the results.

I hope everything turns out well and please let us know what the doctors have said. Sometimes they think we are anxious new mothers but you want the very best for your baby.

Bear in mind I'm not medically qualified.


Hey ever so sorry for your baby. I wish him all the best and swift recovery

Have a look at this



Thank you for all the kind words. I'll keep update soon i get the result.

1 like

Hallo, i have to make this clear again. I was just searching for my son medical history since he was born. Here i got the result from the newborn screening and the second blood test result. Here are the results :

1st Screening

TSH 7.0 mU/L

FT4 24.4 pmol/L

FT3 5.4 pmol/L

TBG 342nmol/L

Thyroglobuline 67.60ug/L

As.thyreogl <20 kU/L

2nd Screening

TSH 4.8mU/L

FT4 20.6 pmol/L


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