[tri-med] Re: Mieko update--hypothyroidism, etc.

----- Original Message ----- 
From: "Maya Nishikawa" <mayanishikawa@xxxxxxxxx>
 The doctors thought it best
> to put her on meds now. Apparently, lack of thyroid
> hormone can cause brain damage in infants. It can also
> affect growth.

When a newborn/infant Alex had the clinical symptoms of hypothyroidism but
lab work was all fine.
He was put on a low level of Thyroid and it was later increased until the dr
felt they symptoms were lessened/gone. Some of the drs thought we were nuts
as Alex's labs were ok but we erred on the side of caution (esp the
endocrinologist we saw later on for growth issues--he acted like we were
stupid but smiled benignly and said the Thyroid wouldn't hurt or help Alex
but if it made us feel better.....).
We too were told that untreated hypothyroid caused mental and physical
retardation in infants.
We didn't have a trisomy diagnosis at the time but knew something was
'wrong'.
I crushed the pills and gave them to him.

At the time, 18 yrs ago, we were told that the lab tests for thyroid was
based on adult needs/levels, there was no pediatric level/scale. Not sure if
that has changed.
And it's amazing how drs will choose to go by lab results and not what they
see/clinical presentations. One would think that keeping in mind that all
bodies are different, with different needs and ways of working would make it
the reverse.

Curiously, Molly was developing a goiter (large, spongy thyroid). She's been
on liquid Iodine (Lugols Solution) for almost 2 yrs. She gets fewer drops
these days than in the beginning--they go in her OJ.
One side of her thyroid is pretty good but the other still is a bit spongy.
Just a few weeks ago (at the sports physical) he said that she may end up on
Thyroid pills when older but at least she won't have a goiter on her neck.
(Apparently you can't make it go away in adults like you can children).

Michelle mom to Alex (18, partial trisomy 14 mosaic) and Molly (14)
MichiganUSA


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