Baby girl with hypothyroidism

[Isabellaj]

Hi I am new. My 8 week old baby girl has been diagnosed with hypothyroidism. Have come here for support. Thanks for letting me join the site.

[Clutter]

Welcome to the forum, Isabellaj.

We don't get many hypothyroid infant posts but yours is the second this afternoon healthunlocked.com/thyroidu...

You and babyj2410 may want to support each other.

There are posts on hypothyroid children (not restricted to congenital hypothyroidism in infants) in healthunlocked.com/thyroidu...

[humanbean]

I'm sorry to hear that your daughter has been born with hypothyroidism. However, the fact that this has been identified early is hugely helpful.

A very important tip for the future :

Start now, buy a folder, and ask for copies of all your daughter's blood test results, including the reference ranges, and keep them in the folder. You don't want just the word "normal" you want the numbers. Start keeping these records for every blood test from now on.

When your daughter gets old enough to start displaying recognisable symptoms or can tell you about symptoms, start keeping records of those to go with each blood test.

So, for example, if she is 5 years old and has a blood test, with the test results note down the symptoms your daughter complains of at that time (if any) with the results that applied at that time.

In years to come your daughter should be able to look back and find out, for example, that she feels best when her Free T4 is 60% or 50% or 70% of the way through the reference range, and feels terrible when Free T3 is below mid-range or whatever.

It will really help her in the future.

If you ever refer to these results don't ever give the originals to doctors. Give them copies instead and always keep the originals!

[Isabellaj in reply to humanbean]

Will do, thank you

[humanbean in reply to humanbean]

Oh, another comment...

There are different reference ranges for thyroid-related hormones for different age groups.

Infants have higher TSH, Free T4 and Free T3 than adults, and as they get older the reference ranges for all the thyroid-related tests get narrower until they are the same as adults. You can see an example of the kind of thing I mean at the bottom of this page :

frontierpathology.nhs.uk/pu...

Please note that the reference ranges supplied with blood tests should always be used, not just random reference ranges from any lab posting on the internet.

[babyj2410]

hello , my son was diagnosed yesterday at the Manchester children's hospital . He's just 6weeks old. He has an underactive thyroid although scans review Tha he has got a thyroid gland . He had his very first dose of medication today. To look and be with him though he's just a normal happy baby . I'm here for support if you need anything 😊

[humanbean in reply to babyj2410]

Hi, babyj2410 , the posts I've made above for Isabellaj apply to you too. Hope you find them useful.

Good luck with everything.

[Isabellaj in reply to babyj2410]

So sorry to hear about your son my daughter's hypothyroidism wasn't found straight away, she had a TSH of 6.2 (0.2 - 4.2) free T4 16.8 (12 - 22) then TSH went back down to 0.69 (0.2 - 4.2) and now this result a week later.

Thanks for support, I'll be here too.