Heel prick test - elevated IRT levels

[Myname111]

Hi, my newborn is currently 16 days old. I was contacted by the maternity unit yesterday to say they needed to repeat the heel prick test due to “ a raised protein” in the 5 day heel prick test. No further information was given other than the retest needed to be done on day 21. I then started googling (I know!) what raised proteins in a heel prick test could mean and all sorts came up about PKU and other conditions etc..cue the worry setting in. I phoned the health visitor today to get a bit more information, whether she could tell me which proteins were raised etc. she started reading out the results from her computer which stated “elevated levels of IRT” which I also then googled and this can be indicative of cystic fibrosis.

Does anyone have any experience of this? And more specifically has anyone had this and the levels were normal again on second test?

Yes, 15 years ago the same happened with my son. Except it sounds like your health visitor or midwife has been slightly better at being calm and factual than mine. Mine came round on Christmas Eve and told us that heel prick showed he could have cystic fibrosis. Of course no labs were open over Christmas. It was the longest week of my life.
But he was fine, it turned out I am a carrier for cystic fibrosis (as is he), but no cause for cause for concern as DH isn't.

Thank you for your reply @VivienneDelacroix. From what the HV went on to read, it sounds like she wasn’t supposed to tell us anything regarding it being elevated IRT levels and I guess why the person on the phone left it pretty vague as in “a raised protein”. Did you and your husband then go on to have further testing to find all this out?

Yes, we both had tests to see which one of us was the carrier. When DS is 18 I'll give him his letter explaining he's a carrier so he can make an informed decision if he decides to have children.
My brother hasn't had children, but if he decided to, he would get tested to see if he is a carrier too.

How are things now? Have you had any clarity?

How was the repeated test op?

She had the repeat heel prick on Tuesday and we were told someone would phone us in the next few days. Haven’t heard yet. I’m hoping they phone today with the results and don’t let us go over the weekend. The midwife who came to do the repeat test didn’t give us any more information or any reassurance to be honest. She couldn’t get in and out quick enough.