Hypothyroid baby on Levothyroxine

[Moz19]

Hi there just wondering if anyone has any similar experience as it seems pretty rare!

Long story short our wee man was diagnosed hypothyroid 2-3 months after birth, this wasn't picked up on the heel prick it seems as his tsh levels were not high they were infact on the low side and wernt rising with low t4 levels, we had an acth test done which came back normal and are now on levo once a day and endocrine 3 monthly to check levels, they have been pointing towards a sick thyroid as he was prem and very sick when born but the endocrine mentioned that it is his pituatary gland thst is the problem although they haven't ordered any mri scans etc. so a bit in the dark with it all

Sorry for the novel lol just wondered if anyone was going through similar or had any idea what we might be looking at?

[SlowDragon Administrator]

Are you under the care of paediatric thyroid specialist endocrinologist?

Likely to need to be a specialist children's centre.

Is he regularly getting bloods tested?

It sounds like they suspect central hypothyroidism. Where the message to tell Thyroid is not working, rather than the thyroid it's self not working

[Moz19 in reply to SlowDragon]

Yes his last peadiatric appointment did mention central hypothyroidism, he has his bloods done 6 weekly at his peadiatric appointment and also every 3 months with his endocrinologist, no one has told us what it could or couldn't be if it is central and I have been googling which never ends well, as far as we could tell the short synacthen test coming back normal was a big plus but endocrine don't seem to be pointing in the direction of a sick thyroid as his paediatrician has so we don't know where we are at currently

[Moz19 in reply to Moz19]

And sorry also forgot to add we are under the care of a peadiatric endocrinologist at present not sure if she is also a specialist in thyroid

[SlowDragon Administrator in reply to Moz19]

So if it were pituitary problem, it would perhaps be likely adrenals were affected. Obviously they seem to have tested that

As his parents you are entitled to copies of his blood test results

[Moz19 in reply to SlowDragon]

I think the short synacthen test was used to test his adrenal function and cortisol release and all came back normal although I haven't requested the test results would this be a good idea?

[Moz19 in reply to Moz19]

At the moment it feels like it's a bit of a wait and see approach and they seem happy to leave it at the levothyroxine keeping his t4 levels within range at the moment however that still wouldn't explain the suppresed tsh levels or the reason behind that as far as I'm aware that's all I'm worried about, don't know if I should be pushing for further investigations