Borderline Congenital Hypothyroidism

[IHTC]

My baby girl is having a 2nd blood spot test tomorrow as her first highlighted she is borderline for congenital hypothyroidism.

Has anyone else been in this position? What was the outcome?

@IHTC not sure if you will see this but did you get the second heel prick results? We’ve just had the same call as you from the midwife to inform the same and I’m wondering how common a false positive is?

thanks so much

I have a 4.5 year old with congenital hypothyroidism. He was diagnosed via the heel prick at 5 days old. He has no thyroid what soever but apart from taking medicine every day and regular blood tests, no one would ever know. I know it's scary in the beginning but I promise you everything will be ok. There's some great groups on FB that will hopefully give you lots of reassurance too ❤️

@rosesandblooms The second heel prick came back negative for my little one. I remember asking the midwife at the time and she said tests often come back borderline and have to be carried out a second time.

I know it’s a horrible waiting game but try please try not to worry. I honestly tore myself apart with anxiety and it was for nothing in the end! Best of luck to you and your baby 💐

Thankyou so much for replying. We are having the test repeated tomorrow so hoping and praying it’s all fine. I have also been a complete wreck since finding out. I know if it’s positive, there are worse things to have but obviously when it’s your tiny baby you just want them to be okay.

thanks again for coming back to me.

@rosesandblooms any news on test results?

Hi! Nothing yet. They did the retest Saturday morning so unsure of when I will hear. I would have assumed they would fast track it given he’s only 17 days old. I did some research and government guidelines are that if it’s positive then he needs to start medication by 21 days so they aren’t leaving much time… I’m just hopeful it’s a mistake. Thanks for checking in.

Just in case anyone comes across this thread in the future… we had a call today to say that my sons bloods were fine.

@rosesandblooms That’s great news! So pleased for you all.