My Daughters Hypothyriodism

[BHanna]

My Daughter has had hypothyriodism since birth, and up until 3-4 years ago was taking medication for it. Since then she has neglected it for the past several years even through 3 very difficult pregnancies. I went with her to her new Endocrinologist yesterday, and she told my daughter that during her exam she couldn't feel her thyriod gland, and told her that she either never had one, or it was " dead", and ordered an ultrasound study of her thyriod. This test has never been done before, why I don't know, but my daughter, and I are both wondering what the term Dead meant, and what this ultrasound study is giong to show? My big question is , What do they do for a dead or missing thyriod?, because my daughter is only 27, So , Is this repairable?

[magpieannie]

Hello, my daughter is 9 (tomorrow!), and she was definitely born with Congenital Hypothyroidism! Her new born screening (heal *****) done at birth revealed inadequate thyroid levels in her blood. She began Synthroid at 3 weeks of age. At 1 year she had an ultra sound and a radioactive iodine uptake scan. Both test revealed "no noteable thyroid tissue." So she has no gland and could not live without thyroid hormone. Your daughter would have to have SOME thyroid function or she would not be able to get pregnant, or even be alive if she had no gland/dead gland with NO function, and went 3 years without thyroid hormone. She must be getting some hormone from her gland or she would not have made it this long without her medication. I'm glad that she is getting an ultrasound and I'm eager to hear what it reveals. It goes w/out saying that she must also have COMPLETE blood work including the freet3 and freet4! (not just the TSH and total t4 as many endo.'s only do), and get back on meds ASAP. You can read my journal entry on my home page if you'd like the details of my daughter's and my experience with this issue. Good luck and God Bless!

[Super_sally888]

Hi,

If your daughter has an absent or improperly working thryoid she desperately needs to be on thyroid meds.

I would guess the ultrasound is just going to see if there is any thryoid tissue there.

The critical thing is that she get back onto meds.  

She needs to be on these for life to stay well and healthy.  She could die from not having meds.