Congenital Hypothyroidism support group for parents

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I'm looking for perent with babies/children with Congenital Hypothyroidism to share information and provide support for eash other.

My baby boy was premature and was only diagnozed upon release from NICU andonly starte dhis meds a day before being one month old. I worry that it was not late enough to affect his mental development in any way, as I read that the early diagnozes is very important for that. So far he looks absolutely normal. He took 12.5 mg of Syntroid daily for about 6 month and then his dosage was increased to 25 mg.

If you have a baby with this issue, how often does he/she needs to see the doctor to check her hormon levels?

Also does he/she experience any sleep issues? My son, 10 months old now, sleeps purely so far, wake 4-5 time during the night. I'm not sure, is it because of his issue and is it my fault for not sleep training him and breastfeeding him to sleep. (I have another twin baby and am just terrified to wake her up as well, if I'll let him cry a bit longet when he wakes up at night, so I pick him up quite fest). The other twin, the girl, sleeps very well and only wakes up once during the night.

I'll be very happy to hear from other parents who's babies/children have the same issues. Especially, if your child is older now and how these things develop and change with the age.

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9 Replies

  • Posted

    I was born with the same back in 1963 and it wasn't diagnosed for 3 months. Parents were warned that I might have learning probs but I didn't. Want to grammar school and got a degree in languages.

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  • Posted

    I am 24 and was diagnosed with congenital hypothyroidism at 8 days. You really need to keep your kids active as they get older. I played soccer my entire life... now that I have been done with college and playing soccer (its been 3 years) I cannot regulate anything. I feel horrible and mostly tired all the time. Take your kids to the doctor every 6 months to check their tsh levels. 
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    • Posted

      I have never had that problem. I wasn't particularly sporty but kept active in other ways like country walking. I haven't had a big problem with fatigue.

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    • Posted

      I don't know what to do or how to feel better. I am constantly tired all of the time and people think it is just me being lazy but I could sleep for days...

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    • Posted

      Thank you for your reply and I do hope you will fill better very soon!

      Can I ask you, do you remember having sleep issues as a child or when you played sport and felt ok otherwise?

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    • Posted

      Nataly, as a child with congential hypothyroidism, I can say that regulating my metabolism was very hard. For most people who are hypo-they tend to gain weight. I NEVER gain. I was always very skinny, and still cannot gain weight. For that reason, there were times where I would go to bed and not wake up until 5 pm the next afternoon. I am now 24 and just going to see an endocrinologist for the first time next week. That's why I stress constant activity for your kids, (soccer was my nitch) it helps with routine so tiredness will seem as natural and the mental effect of thyroid problems will not consume their physical and daily lifestyles.

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  • Posted

    Hey Dear Nataly,

    I am from India my 4 month old son diagnosed with thyroid problems is having is thyroid levels are T3-35 T4-Below 1 and TSH above 500...=

    Doctor started him on capsule Eltroxin...how soon will he recover

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