my daughter was born in 2000 with no thyroid the doctors...

Posted , 4 users are following.

my daughter was born in 2000 with no thyroid the doctors picked up on this fact only in her 3 day heel pick test it came back abnormal.she takes a tablet daily and has routine bloodtests which have all been good she has just started school this year and i have found that so far she is as normal as any other child she goes to school with.

kellie townsville queensland australia

[i:6062337195]This message was automatically imported from the original Patient Experience[/i:6062337195]

0 likes, 5 replies

5 Replies

  • Posted

    My son was born with only half of his thyroid gland and this was picked up on the heel prick test. Born in 2004 and taking 37mcg of levothyroxine daily and seems to be growing and progressing at a normal rate. Did your daughter sleep ok as my son doesn't. Everything I read says being lethargic and sleepy goes hand in hand with hypothyriodism. This is not the case with my son.
  • Posted

    my daughter was born in 2000 also with no thyroid and was picked up on when she had her heel prick test.she has progresed very well and doing well at school but have had really bad times when it comes to sleep.was wondering if anyone has got the same problem as there isnt any support groups out there.
  • Posted

    My daughter has congential hypothyroidism and slept very very badly for years. She is now 13 and sleeps very well.
  • Posted

    Hi all, the sleep problem does not seem to be recconised by any health care professionals we have seen, but is'nt it strange all our kids have sleep problems. No there is no support group I have found. I think it's seen as a chemical imbalance rather than an illness. But these people dont have to live with rather hyperactive kids like we do. I think the Doctors see these kids regularly because as there is not too many of them about they dont know what if any problems they may have in the future and they dont have guidelines to go by. We just live day to day with our son as you never know what sort of mood he is going to be in.
  • Posted

    Hi there.

    My daughter is 4 months old and has been on thyroxin due to a lingual epotopic thyroid gland since 14 days old.

    Initially she was prescribed 50mcg os leveothyroxine daily which was then reduduced to 37.5 after i felt she was being over treated and then again to 25 mcg when i flagged that i felt she was being over treated. I felt her levels were too high because she would (physically it felt!) fight sleep or would get very angry because she couldnt drift off. She also cried alot and didn't like being handled by anyone other than myself. I just had a feeling that she wasn't quite right.

    I now feel that her dose is allot more suited to her needs and the fiestiness and sleeping problems are allot better. Could your children be being over treated perhaps?

    I know a lady who is in her late 30's who has lived with this condition all her life and it was her that told me to ask for her blood test to be brought forward if i felt she wasnt quite right and im glad i did because its given me the confidenance now to challange her dose with the health professionals and the truth will be in the TSH and T4 levels when the results come back. Its worth a trip to the pathology lab in my opinion because it must be awful for them when they're being over treated.

    Remember you know your babies and their conditiona better than any doctor who has gained all their knowledge from a text book. They haven't lived with children on the meds.

    Liz UK

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.