Newborn Thyroid Problem? PLEASE help :-(

[clouiseg]

Hello all

I need some advice please about my beautiful newborn DS. He is 22 days old and I am worrying myself silly!

He has had significant jaundice since day 2 and the HV sent us to NNU on Wed as she was very concerned that at 3 weeks he is still jaundiced. He is EBF so I wasn't too concerned! Anyway the jaundice levels, although still high, were greatly improved from his last blood tests. Happy days...!

However they informed us that little mans bloods had shown some more concerning results. His TSH thyroid levels are high. Apparently the actual thyroid level was at the low end of the normal range but the concern is with the TSH of 9.4. Hypothyroidism was mentioned??!!

This is foreign to me! I chased his heel prick result today which was normal. But the test at 3 weeks is high enough to warrant concern and we received a call from the paediatrician at home yesterday asking us to attend soon for repeat tests. I am confused!

What is the normal range for TSH in a 3 week old? And how can there be a problem now when the heel prick from day 6 is normal?

Needless to say I am so anxious as I'm aware the effects on my baby can be terrible if diagnosis is delayed, although I'm trying to stay positive.

Does anyone have any advice at all please? Thank you.

[Bumperlicioso]

No real advice but I know that (in adults) hypothyroidism is really treatable and just a case of taking thyroxine replacement. Hope you get some proper advice soon.

[clouiseg]

Thanks for replying bumper.

I think that tablets would be easy enough to cope with it's the interim that worries me. At this stage the infants development can be affected so every day is crucial...I'm just praying for a better result from the next bloods but not too hopeful just in case.

I have a DD with ADHD & Autism and so I know all too well how tough life is for her with delayed development (even though to me she is just perfect)

Fingers crossed....

[Bumperlicioso]

I would hope that if they were really concerned they would see you quickly. Hope your DS is ok.

[hellymelly]

9.4 is very high,but I am going by what I know of adult levels,newborn babies may be different.When are the tests? I would get them done asap so that they can start treatment if nec.Try and get to see a paediatric consultant this week,could you call the hospital?

[clouiseg]

Well he's being looked after by neonatal unit and there was mention of a referral to a specialist if the results are not improved. They want him back on the 3rd for repeat TSH & T4 (I think?) testing, which is 2 weeks after the initial result. Apparently this is standard practice for lo's with concerning or changing thyroid results...I feel 2 weeks is like a year but I'm sure they know what they're doing?!

I committed the ultimate sin and googled the condition and immediately regretted it as I was with the results, even from the NHS website. I don't mind confessing that I'm really anxious for a good outcome, and the 3rd can't come soon enough

Thank god for moral support on mumsnet. x

[hellymelly]

I am so sorry that I forgot to say congratulations!
They will probably do T3/T4 and TSH. They sound on it at least-perhaps they need the wait to see if levels are changing? How horrible for you to be waiting and worrying though,and not nice for poor little ds to have repeated bloods taken. Also at least his levels of thyroxine were normal,albeit at the low end,so at the moment he has enough in his system. Hope it is all sorted out soon and he is ok.

[clouiseg]

helly thank you!! We are over the moon with him, after 3 DDs he's the icing on the cake !

You're spot on about the waiting! It's really difficult. My friend was telling me her nephew was born without a thyroid and there were certain things they noticed about him when he was tiny before he was diagnosed...so I've been looking at him and almost praying none of the same things are there .

Another week and we'll have some answers...x

[hellymelly]

I have a close friend who had to have her thyroid removed in her 20's due to (chernobyl linked) cancer.She has to take thyroxine,obviously,but she is is very fit and well,now in her 40's.It is very unlikely that your ds has no thyroid at all,but even if that is so,it is managable . Hopefully it will be fine anyway,when will they test him again? Must be exciting to have a wee boy after three girls,he is a lucky chap to have lots of big sisters.

[PacificDogwood]

Congratulations on your DS !

I don't know a lot about neonatal hypothyroidsm, but just wanted to say that as far as his development goes, he should be fine as his T4 levels were ok, yes? His TSH being high simply means that his thyroid is working abnormally hard to produce a 'normal' T4 result, but in the shortterm that should allow for normal brain and general development.

Good luck with next week's blood test.

[JJ02]

Hello I'm new to this site and i was just looking through when I came across your thread. You obviously must have had results by now Did your child have a Thyroid problem? and if so have you received lots of help. My son born in 2006 had the heel prick test and it showed straight away that he had a serious problem with his thyroid I was very scared as we had no knowledge of this before hand. He has Congenital Hypothyroidism very rare indeed apparently. Any way to cut a long story short He takes every day levothyrox and has done since birth. he has regular blood tests for TSH T3 and T4 to control the level of medicine he needs currently he takes 75mg daily which is quite high. his thyroid does not function at all. It was very hard in the beginning with all the tests scans etc, but he is a normal almost 5 year old. he did not and still does not have any of the possible out wood signs of this condition. and of all the illnesses one could have this seems to be the most easy to treat and control. I hope this may reassure you.
best wishes

[sallysparrow157]

9.4 is not that high for a new baby and I would expect that this is something that will go away by itself (the normal values are for adults not babies, so it's not infrequent that babies get 'abnormal' blood results in all sorts of things just because the real normal range in babies is slightly different)
There are different causes of hypothyroidism, the heelprick only detects the most frequent cause, there are some very rare causes that would give a normal heelprick, which is why we re-check the levels in situations like prolonged jaundice
Hypothyroidism in childhood is COMPLETELY treatable - daily thyroxine means even if it does turn out your child has congenital hypothyroidism he will develop completely normally.
But the most likely result will be that the repeat tests are normal and he doesn't have hypothyroidism at all. I dont know how many hundreds of times I have done thyrpod function bloods on babies who are still jaundiced at 2 weeks. I have NEVER picked up a baby with hypothyroidism but quite frequently have had slightly abnormal thyrpid function tests which i have repeated and they have been normal