TSH > 80 - Congential Hypothyroidism

[aussiejohn]

Hi our baby girl was born last week, and was diagnosed (as having an ectopic thyroid gland - based on a questionable scan) on the screening test with a TSH higher than 80.  Based on the TSH result our pediatrican has recommended that we start her on Thyroxine asap - he has warned us that if we do not we run the high risk of mental handicap.  All up this baby is very healthy and not displaying any symptons.  My concern is that putting my precious little angel on this hormone at this age will likely affect any functioning thyroid that she has and she will remain on this perscription for life.  Does anyone have any other suggestion to avoid having to go down this path of using this treatment.  Any other suggestions welcome.

Regards,

Jack

[aussiejohn]

Guys, thanks for the info and kind thoughts.

We have today given her her first 25 micrograms of thyroxine, which is the recommended dose for her weight.  I understand the point that the risks of issues outweigh the treatment - I guess it's that maternal instinct to always try and do the best thing and not to look back with any regret.  We are now comfortable that we are doing the right thing and we thank God that such treatments and good medical assistance is available. This webpage and forum in itself is such a great tool.

I also managed to speak to a friend who is an experienced nurse today and she is familiar with the condition and she was such a comforting person.  Aside from the medical info that she provided, she said that we were grieving (the loss of that perfect child) and the penny dropped that that was exactly what had been happening over the past few days.  Wow - I hadn't seen that.  It's so comforting to hear your kind thoughts and prayers too which will count towards giving us all strength to face this path that we now head.

We recieved the following test results also :
Free T4..13.1pmol/L (NR 10.3-32)
Serum Bilirubin 180umol/L

Still waiting on the T3

Not sure what these mean at this stage so again any info please feel free to comment.

Best Regards,

Jack

[Terri627]

Hello John,

First I will say I am sorry your precious child has this problem right from the start of life.
I would like to share a story. My mother's cousin, Carol, was born hypothyroid, along with other issues. She was not treated properly, and suffered from mental difficulties. She was extremely intelligent, but was slow, not sure how to put that. She was also severely hearing impaired. Carol was born with a multitude of problems, not just the thyroid. However, she did not grow to be very tall, she was under 5 feet. I'm 5 feet tall, and I looked down at her. She had a lot of weight issues and never had much energy. Of course, I am using the past tense. This is not to alarm you. Carol was born with heart problems, and passed away at the age of 52 due to her heart condition. I just think, that if they understood the consequences of weight and lack of energy, and maybe the height issue ( her mother was at least 5 ft 8 ), her parents would have done more. But maybe because it was so long ago, medicine was not where it is today.

Please, I know this is hard, but she will be a much happier baby and child if she is treated properly! My heart goes out to you and your family. Take care,  I'll say a prayer for her.

[Super_sally888]

Hi,

your baby's TSH is very high becuase her thyroid is not working.  It is critical that she be given thyroid replacement medicine for her normal development and that should start as soon as possible.  Her thyroid function will need to be monitored regularly and her meds adjusted from now on.  

Giving her t4 won't suppress what thyroid function she has, which at her level of TSH is very little.

At least this is a manageable condition and with treatment your baby will be fine and normal.

Best wishes