Another mom

[Guest guest]

Hello!

My name is , and I'm the mother of Lillie, 17 yrs old, diagnosed

with GD in late May 03. After Tosha's and Betsy's letters, and the

responses, it seems like the time for me to jump in.

I have corresponded with Elaine, as I was shy to join the group, being

a mother and not the patient.

First of all, to Tosha:

My daughter has been doing very well on ATDs for 4 months, now, with

no adverse effects. I've done a ton of research, and have come to the

conclusion that ATD's are the only way to go. After the first month,

the endo ordered a battery of tests for white and red blood cell

counts, and all was well.

The odds are in your daughter's favor, especially with you as her

advocate. My heart goes out to you.

I'd like to share with the group some of what I've sent to Elaine.

I'll start with the labs, and follow with personal info.

I've been reading your posts, and have learned so much, including the

fact that it's good to follow your instincts and get lab-work done

sooner rather than later sometimes.

Recently Lillie's been a bit lethargic -- sleeping more than usual,

unmotivated. So we went to get her labs done 2 weeks sooner than

recommended. It was a good thing we did, as it's changed a good deal!

Now we're in the tricky part, I guess, and so I'd like to share her

lab and med history with all of you, and get your take.

5/5/03:

TSI: 332 (<130)

T4 free, direct: 5.53 (0.83 - 1.44)

TSH: 0.051 (0.360 - 5.800)

T3: 565 (91-164 - for girls 16-18 yrs. old)

Thyroid uptake and scan: 82% (should be 25%)

She began taking 30 mg of Methimazole on 5/8/03

6/10/03:

T4 free, direct: 1.92 (0.83 - 1.44)

TSH: 0.055 (0.360 - 5.800)

T3: 247 (91-164)

(her white and red blood cell counts were tested on this day and found

to be normal)

7/7/03:

T4 free, direct: 1.60 (0.83 - 1.44)

TSH: 0.051 (0.360 - 5.800)

T3: 191 (91-164)

Dosage lowered to 20 mg of Methimazole on 7/18/03

8/8/03:

T4 free, direct: .86 (0.83 - 1.44)

TSH: 0.055 (0.360 - 5.800)

T3: 113 (91-164)

Her dosage was just lowered yesterday, 8/11/03, to 10 mg.

Our concern of course, is the low T4.

Is the new dosage of 10 mg correct under the circumstances, do you

think?

Is it OK to change so rapidly from 20 to 10 mg, or should she taper

for a few days, at 15?

How long before we see a change in the TSH?

Is there any way to know what to expect next?

Is there anything we should be on the lookout for?

Her eyes are about the same - slight proptosis, a bit bloodshot.

Goiter still present, but not really noticeable to untrained eye.

Her pulse is much closer to normal, her heat intolerance and her

trembling and palpitations have stopped.

Emotionally, she's remarkably stable right now.

Last question: Are there any mothers of teenagers with Graves out

there??? And does anyone know of a support group for teens that my

daughter might join?

Here's the short version of her long, complicated story:

I hardly know where to start. She feels, and we agree, that she'd

probably had Graves for at least 3 years before being diagnosed.

Around when she was 13 and 14, her behavior and appearance changed

drastically. She went from being an extra-healthy, excellent student

in grade school, to a spiral of disastrous emotional and

school-related difficulties. Of course, we just thought she was having

an extra-rough adolescence (not so uncommon), and it never occured to

us that there might be a physiological explanation. There have been

many ups and downs -- Suffice it to say that we've all been through

the wringer for the past few years! It's a testament to her own

intelligence, resiliance and strengths that she is doing so well right

now. She is an amazing and beautiful young woman. Making the long

story short -- currently, after failing 11th grade, she's decided to

stop going to high school (i hate the term " drop out " ). It just seemed

like too much for her under the circumstances. The sky did not fall

in. She relaxed after making this hard decision -- a weight lifted

(stress reduction!). We've come up with what we feel is a good program

for her for the fall, including taking the GED (high school equilancy

diploma), art classes, music lessons, and a job. (Art and music are

her loves.) She might begin taking classes at the local community

college in the spring, or next fall. She would like to go to art

school when she gets better.

She's basically doing pretty well, now, and is in pretty good spirits.

We know we must be vigilant to keep her from going into

hypO-thyroidism.

I look forward to hearing from the group, and to sharing info and

support. It's all still so scary, even if it is getting a bit more

comprehensible.

Thanks in advance,

-

By the way, I'd like to recommend Lillie's endocrinologist. She is a

young woman, named Dr. Ayesha Cheema, in Kingston, NY (Hudson

Valley/Catskill region).

She's been very responsive and thorough, and has not pushed the RAI on

us. In fact she recommends ATD's as the preferred treatment.

Oh and Lillie's also been doing cranio-sacral therapy. She seems to