Newborn Screening Errors/Low Thyroxine Level

Did anyone have any newborn screening issues or have a child with reportedly low thyroxine levels??? DS is 14 weeks and was sent for his 3rd test to recheck his thyroxine level. It continues to come back low which is indicative of thyroid issues (which run in my family). The doctor does not seem concerned because apparently the state always screws up these tests. I just feel like how many times can it be screwed up!!! Also, if there is an issue, he is not getting the treatment he needs (they say medication by 5 weeks of life is important). I am a total basketcase over this! The doctor took over a month to notify me that the results were off!!! I just want to know if there is a problem and we weren't even able to get enough blood from him today! Anyone have a similar situation with newborn screenings???

Re: Newborn Screening Errors/Low Thyroxine Level

Honestly, after this long Dana, Id be on the hunt for a new pediatrician, at least for a 2nd opinion. If in fact he has a thyroid issue and should be having it treated already, then its important to find a Dr on the same page as you and validates your concerns and handles them in a timely fashion. Your Dr should not brush you off, treat your valid concerns in such a blase manner and leave you to freak out for weeks on end.

Hope it all works out hun!

Re: Newborn Screening Errors/Low Thyroxine Level

You are definitely right! He said he doesn't want to get me upset until we know for sure because this is extremely common. Totally understand! However, it takes 2-3 weeks to get these results back from the state each time we do it and it keeps coming back with low levels. Everything I read says if baby isn't medicated within 5 weeks of life it can slow brain development and cause severe learning disabilities and ADHD. He isn't concerned because his thyroid stimulating hormone was fine, which is telling him it is an error because both would be off. He also said he would be extremely malnourished and have failure to thrive. I get all of that! I just can't understand why the damn test won't come back normal then and why I can't get the results in a timely manner!!!! Thanks for the advice Mel! I really like this doctor but he has a don't freak out until you have a reason to freak out attitude which I love and HATE!

Re: Newborn Screening Errors/Low Thyroxine Level

Is there a point where he will either believe the tests results or conclusively say that there is nothing to worry about? Has he said how he will determine that? For both Matthew and for your sanity......at what point is enough enough? You know? I think you need to be more assertive with him (if you dont mind me saying so). You need to put your foot down and say "enough is enough.....I want answers, I want definitive answers and I want them now bc I want to treat DS if thats what he needs, or I need to be able to put the worry behind me and move on if it is nothing!!!!!!"

Re: Newborn Screening Errors/Low Thyroxine Level

You are absolutely right! He did put a rush on this test so we should have the results in 2-3 days. Jason and I discussed that if they are still off we are just going to take him straight to an endocrinologist to get some answers. This has definitely gone on way too long now and although everyone keeps telling me this is a common issue... GET IT RIGHT ALREADY! Grrrr! I will keep you posted... thanks for the advice!

Re: Newborn Screening Errors/Low Thyroxine Level

good luck, keep me posted!

Re: Newborn Screening Errors/Low Thyroxine Level

Posted by eddiesmommy

Honestly, after this long Dana, Id be on the hunt for a new pediatrician, at least for a 2nd opinion. If in fact he has a thyroid issue and should be having it treated already, then its important to find a Dr on the same page as you and validates your concerns and handles them in a timely fashion. Your Dr should not brush you off, treat your valid concerns in such a blase manner and leave you to freak out for weeks on end.

Hope it all works out hun!

Re: Newborn Screening Errors/Low Thyroxine Level

Put your foot down, you have it in you!!! I know you do Enough now! I get that he is laid back but this is 3rd time, when does this become a concern? Love you and Matthew

Re: Newborn Screening Errors/Low Thyroxine Level

I am manning up and putting my foot down lol! I have had this doctor for 20 years (he was mine) and I have never had a problem and actually loved him. I am going to chalk this up to the state getting the results back delayed and the office staff filing this paperwork when it should have been put on his desk because it was off. I will see how he handles these results and if it is not handled properly I am heading to your doctor Mel.

Re: Newborn Screening Errors/Low Thyroxine Level

Posted by eddiesmommy

Honestly, after this long Dana, Id be on the hunt for a new pediatrician, at least for a 2nd opinion. If in fact he has a thyroid issue and should be having it treated already, then its important to find a Dr on the same page as you and validates your concerns and handles them in a timely fashion. Your Dr should not brush you off, treat your valid concerns in such a blase manner and leave you to freak out for weeks on end.

Hope it all works out hun!