Congenital Hypothyroidism

[Efitz87]

Hello, my little boy has just been diagnosed with congenital Hypothyroidism. It's been quite a devastating blow to us, and I was just wondering if any other parents have any advice or positive stories that might share.

Also if anyone is going through the same thing it would be great to talk.

Xx

I am trying to prevent it currently as am pregnant with hypothyroidism. I was told as long it wasn’t severe in the womb the baby would be normal provided if the medication was started immediately (ie before symptoms presented).

Hi... I don’t have it, but have had atrophic hypothyroidism since I was very young. (Almost the same thing, really.) My cousin’s daughter was diagnosed with congenital hypothyroidism at three days old, though. It’s clearly and issue in my family. She’s 13 and I am nearly 47. We are both fine. We have both been monitored regularly and treated conventionally. They know much more about it now than when I was a kid. We both achieved well at school and she doesn’t have other autoimmune issues. (Different pathology - my mother chain-smoked deliberately during pregnancy with me.) I would recommend avoiding American websites about thyroid disease. Due to their woeful medical system, their diagnosis and treatment is appalling. The websites are very dramatic. Your child is lucky to have been born in an era where the heel prick test has picked this up and will grow and live a normal life. It’s a shock, but it won’t be for long.... I promise.

Isolated thyroid hormone deficiency arguably the simplest endocrine disorder and most straightforward to treat. On appropriate replacement therapy people go through life indistinguishable from their peers and have normal growth & development.

Hi OP. I have congenital hypothyroidism and am very healthy with no difficulties (mid thirties now). I had extra monitoring in pregnancy but it was straightforward. Congratulations on your newborn

Hi

My dd was found to have this on the heel prick test at 5 days old. I remember that awful feeling when the midwife called with the results.
Dd was tested every week and her levels improved week on week and were within normal at 16weeks old.
She has other endocrine issues now but the thyroid issue is just monitored and has presented ‘normal’ more often than not. She’s 10.
Sending you a hug. X

hi
I'm 16 and have been diagnosed w/ congenital hypothyroidism when I was born so I guess I'm qualified to answer??
I used to have crushed levothyroxine w/ milk in a spoon every morning (not gonna lie, it tasted nice )
However, I suffer slightly from CH.
(This won't happen in with most newborns, I promise)
I have a small problem with concentration, which means it takes me a while to focus my mind on a particular thing, for example homework and school tests.
But my grades are considered to be good so far

When I was born, I weighed 10 pounds due to being born three weeks late. But I grew up being slightly underweight despite eating a lot, which is kinda confusing since apparently hypothyroidism is supposed to make people gain a lot of weight...

To conclude, I'm leading a fairly normal life and my current dose is 150mcg.
I wish you and your son the best of luck @Efitz87

Hi hope your well, my baby is 7 days old and I’ve had the phone call saying to come in for bloods and they confirmed congenital hypothyroidism, I feel sick with worry how is your little one doing

Hi, my daughter is 9 weeks old and was diagnosed with Congenital Hypothyroidism following the heel prick at 5 days and has been on Levothyroxine since 7 days... today we were told her levels of TSH and T4 are within normal range. It was such a horrible shock getting the call to say come in to A and E and I definitely felt very low following the news, but feeling really positive now. She is quite sleepy, much less than before, but she definitely sleeps more than my 3 year old did at that stage! @Efitz87 how are you getting on now? And @Sharmainerose sending love to you, I know how you feel, I’m only slightly further on the CH path than you but I promise you once they are on the Levothyroxine and settled in the routine of taking it you will feel so much better. New to Mumsnet and first message! X

@Jenni100 thanks it was so much information on something I had never heard of and due to COVID I had to be at the hospital alone with baby. I’m feeling much more settled now, baby is 3 weeks old and seems to be doing well we have our second bloods begin of feb hopefully they go well. Google is a scary place I’ve found much more helpful information on here. How you little one is doing well