anyone know anything about hypothyroidism in a baby?

[RememberToPlaywiththeKids]

DS has down syndrome and they check thyroid function routinely. The hospital has just called to say that his TSH and T4 levels are high. Someone will call me tomorrow with a plan of action but she thought they would retest but she wasn't sure when.

Anyway - how is the treatment given? Is it oral liquid or injection? How does it work in little ones.

His levels were really high :(. He's 2 weeks old.

No way will injections be needed and I am sure a syrup would be available for babies.
TSH (thyroid stimulating hormone) -not sure about T4- goes high as it tries to make they thyroid gland produce thyroxine. Basically the thyroid gland doesnt work well - neither does mine! I just take a tiny tablet daily and blood checks every now and again. Your DS will need more frequent tests as he grows unfortunately but its a condition commonly seen and easily treated

Thank you for replying - i've got myself all stressed about it because i know if it isn't picked up soon enough and treated in babies it can affect physical and mental development - both of which are already going to be challenged in poor DS. I'm worried they should have checked in the first couple of days after birth and not left it so late.

Although the levels of THS is high you also say the T4 is high. so this would indicate that the pituitary gland is working harder but it is maintaining the T4 (thyroxine) at a normal/high level. For a baby to be hypo thyroxine needs to be low. If a baby is hyper then it is overactive and high. They will explain to you what exactly is going on but no matter what it is treatable. Do not worry about developmental problems if the T4 (thyroxine) is high or OK it will have no effect, and it would take a very long time for the low levels to cause significant damage. 2 weeks is not long!

My DD was diagnosed at eight months.

Children usually take the medication in a liquid form, but we decided to opt for the tablets and crush these up and mix with a small amount of water and syringe it into her mouth.

When she got to about 16 months we gave her the tablets without crushing and mixing with water, and she took them and just ate them.

Now at nearly four she reminds us to give her the medication!

The tablets are soooo small, and my DD's strength is 75mcg per day, and she takes this first thing in the morning before her breakfast.

I hope this helps, if you need to ask me anything please don't hesitate.

Good luck.

Thank you both of you for replying - the prof called us yesterday after we phoned up and said that we were panicking and he said that the levels are absolutely fine . TSH was 7.6 (normal range up to 4. something) and T4 was 28 (normal range up to 22) and he said that they'll recheck in a month or so but no action needed currently and it's all considered normal.

This is all very stressful - about to start a thread on babies being sick through their nose and struggling to breathe until it clears.....

I'm finding this all rather hard - I hate feeling so anxious that I have to watch them every second. I also have a cold and a pounding headache and feeling very tired.

:( :(

can I ask you both what the levels of TSH and T4 were to lead to treatment for you and your DD?

Its difficult to say as different laboratories sometimes report using different scales. I have googled levels in the past and got umpteen different ones! When the test results come back they come back on a printed form which has the normal levels in brackets next to it used by that lab, so the reader can easily see whether high or low.
I'm an adult (no really!) so my levels are different from a baby, and my thyroxine levels stayed normal but the stimulating hormone was working harder and harder, so my GP put me on the lowest tablet so that I never became symptomatic and have been on it ages with no change.

PS babies are often sick through their noses, just lean him forward so that gravity can clear his mouth and he should be fine, the oral cavity is much bigger than the nose so he will gulp enough air in that way. If he is a sicky baby, and DS babies often are a bit low toned leading to spitting up more, keep him upright post feeding, head of the cot raised on books type of thing.

Horrid being sick your self when coping with a little baby. It will get better.

Hi Remember
My ds was born with congenital hypothyroidism because I forgot to make him a thyroid gland (as he likes to say!). He was started on Thyroxine at 10 days old. He is now 10 and indistinguishable from his siblings and peers (well, a bit cleverer than most of his peers!)

So don't worry.
Your results show that his thyroid isn't functioning perfectly - he is hypothyroid ie is low in thyroxine. A TSH of 7.6 is not normal, it is high and he will likely need treatment.

Treatment is a tablet once a day. There is a liquid available but it is rarely used as it doesn't give an accurate enough dose of thyroxine (some tsps will have more than others etc). We have been using tablets since DS was a baby - before he could deal with them we crushed them in an egg cup with a tiny bit of water and syringed it into his mouth like babybreath says. No problem.

The nice thing about thyroxine is that it has a very long half-life which means it takes ages to leave the body which in turn means that if you forget a tablet in the morning you can take it whenever or even when they are older forget it a couple of days and it doesn't really matter. It is nothing like insulin where lack of it prompts a crisis - lack of thyroxine slows down the metabolism and makes them sleepy, nothing else.

That said, it also regulates brain development so it is very important to make sure children's thyroxine levels are right. If they are, they develop completely normally.

So in summary - yes he may need to take thyroxine, no it isn't a scary process, and of all the endocrinological problems he could have, this is the easiest to manage and the least scary.

Good luck!

PS they can't accurately check within a few days of birth because they will still have some maternal thyroxine in the system. They check at 7 days old with the heel prick test. Then it can take a couple of weeks to come back through the system with another test. My boy was caught earlier because he had terrible jaundice he couldn't shake off so they checked his levels in hospital. Your boy was caught earlier because of his downs syndrome. 2 weeks isn't too late to start him, there will be little or no adverse impact. But they should start him on Monday and check his levels about a week later.

HTH

but the prof said that he isn't hypothyrid and that he doesn't need treating. this is the prof of the neonatal unit at UCH in london.

He said that if he'd got the results when I was in clinic with DS then he would have looked at them and said his thyroid is fine and I would have been none the wiser.

aaaargh.

Re the sick through his nose - he was arching backwards strongly and wouldn't let me hold him forwards. He was panicking too.

I do feed him bolt upright and wind him really often during a feed but I must have missed a bubble this time :(.

They've also found changes in his blood which may mean he has something called TAM - a transient condition BUT a significant no. of those with TAM as a baby will develop leukaemia before the age of 4 :( :(

I'm feeling so stressed.

well different labs produce different results but if my ds was producing a tsh of 7+ at our lab his dose would be being increased

maybe just question him on why he doesn't need treating when he is above the normal range (and that range is in any case quite large to allow for variations)

I'm really sorry about his multiple problems. It must be very worrying for you. Hang onto the thought that he only MAY have TAM, he may not. And if he does that MAY mean he gets leukaemia but probably means he won't. If you multiply those two statistics together that means he is unlikely to be so unlucky. Hold on to that thought - and enjoy him! I love newborns :)

I did ask him why a value double the upper range was considered ok and he said that he'd seen a 1000 times where some babies normal level was outside the normal range and that it didn't mean anything. He sounded reassuring and convincing at the time but having googled again tonight (I know I know), I see that they want to (or have??) dropped the upper range to 2.5/3.....

I wish i could just stop worrying as that doesn't change anything but I'm wondering if I need to stick some rockets up some bottoms to get this followed up.

I think you ought to get the prof to refer the results, and you, to a paediatric endocrinologist.

And tell him that you are sure he will understand why you want a second opinion

at the very least he should be repeating the blood test because if he IS hypothyroid there is only one way that the TSH results will be going - and that is UP

Ask him why he isn't repeating the bloods and referring you to a paediatric endocrinologist on monday

this is not good enough - a result outside the normal range and not followed up? he may have seen lots of babies with rogue results but this one might not be. the only way to tell is to repeat it.

i agree. he also said the fact that t4 was raised meant the results were ok

oh and said with the profile as it is, if tsh was 16 or something, then he'd be thinking something was up.

well everyone has a different baseline
but raised tsh and raised t4 means that although there is a high level of t4 in the blood the pituitary is still ordering the thyroid to produce more. What is free t3? Maybe that is low?

I still think with such ambiguous results outside the normal range it should be repeated sooner than later with such a tiny baby

Do you think DS has reflux. babies with downs are often low toned and can be more inclined to reflux. Classic signs are : sicking up small amounts after feeding, crying when feeding, and arching back when feeding. If none of these things and he's just a sicky baby you can get thicker milk which stays down better via your health visitor?
Sorry cant find TAM and have not heard of it personally. You will probably feel better if you talk to someone nice and with time to explain everything to you, its so frustrating get odd calls here and there.

I've just remembered that his guthrie test results are due back this thursday (the heel spot test they do at 7 days old) and thyroid is one of those, so that's good.

I do wonder if it's reflux but I have to say, he doesn't have any of those other symptoms (yet) and i think currently it's just when he has a bubble of air caught that the milk comes up. With proper winding, the milk seems to stay down and he seems comfortable.

Thank you for your thoughtful replies - I really appreciate them.

hypothyroid babies also low toned
my ds very much so

good that the guthrie is coming back but it is a bit historic - I wonder if it will help solve the problem? I guess if the TSH is lower then that is an indicator that something is going on, perhaps with t3. If it is higher I don't know what the hell that means. If it is the same that would back up the prof to some extent....

Desiccated porcine supplements appear to be a good choice when it comes to regulating thyroid function. If you have trouble with weight loss and are feeling sluggish and tired all the time, then it may be worth it to give a try.

bovine thyroid supplements were better for me, even at a low dose, than the Synthroid that I was taking.