[Anonymous]

#1054190

Hi, everyone! Although Colorado is my favorite vacation spot, it’s great
to be back home. I’m still trying to catch up with the wash, mail, BB,
etc., but I thought I’d drop you a note or two or three about the conference.

First of all, it was a HOOT to meet all of the BB posters!! I can now
call them true friends, instead of cyber-buds. Putting a name with a face
and personality makes the BB posts even more meaningful. What a great
bunch of people! (Hey guys, Brent says HI!)

The meetings were worthwhile. Good speakers, very interesting facts, great
participant questions, some controversy and differing opinions, excellent
food, and a gracious host, Nancy. It’ll take me too long to explain my
notes in paragraph form, so I’m going to just list my thoughts and the
details I wrote down from each meeting. Other conference attenders, if my
recollections are off, please correct and/or elaborate. This post will
be looooonnnng — sorry!

Friday – “Medications, Herbs, and Myths to Be-aware,” Norman Tomaka, pharmacist
Jeannette did a great job of summarizing his talk, so refer back to her post.
He warned us about taking Synthroid with milk and caffeine, so I asked him
about my daily habit of cappucino and Synthroid. First thing he asked was
if I was feeling well. If so, he emphasized doing the same thing every
day at the same time. Consistency seemed to be the key. He still recommends
taking Synthroid in the a.m. with water, one hour before eating.

EM, I asked about Synthroid thinning the blood. He said no, it’s the meds
that we take for our heart that thins it (if you’re on those meds). Also,
he said that there does seem to be a connection between our monthly cycle
and thyroid hormone replacements. They don’t know enough about the changes,
but it would seem possible that our thyroxine needs to be adjusted during
that week. No real answer on that one.

Big picture: Ask *your* pharmacist about your meds and food/drink interactions.
Communication with your doctor and pharmacist is the BEST medicine.

Saturday – “Graves’ as a Patient, Father, Husband, & Physician,” Dr. David Cooper, M.D.
A great speaker who gave an excellent overview of GD and treatments. I wish
I had heard this speech when I was first diagnosed!!
Facts/opinions from his practice at Sinai Hospital, Baltimore, MD:
Graves’ Disease causes 80-90% of hyperthyroidism cases.
2% of women get GD.
5-7% of children with histories of family thyroid problems get GD. The older
the child, the greater the chance.
30-40% of GD patients have obvious eye problems.
Europe and Japan use ATDs most frequently.
10% of remissions are spontaneous. Approximately 50% when ATDs were used.
Remissions are most likely when patient has: mild disease, small thyroid
gland, no/slight eye disease.
Remissions are least likely when patient has: large thyroid gland, a relapse
has already occurred.
Children can be maintained in a normal state for years with the use of ATDs
*and* thyroid hormone replacement drugs. RAI used rarely.
Parents watch for these symptoms in your child: changes in weight, behavior,
appetite, growth spurts.
ATDs: usually used 1-2 years, more side effects with higher doses, no
evidence for remission – but more likely with higher dose(?).
’92 Scandinavian study showed 33% of RAI patients had worse eye symptoms.
Another study showed RAI patients who got thyroid hormone treatment one week
after RAI didn’t get eye symptoms as bad. Does going *hypo* cause progressive
eye problems??
Cost effectiveness: ATDs $1440, RAI $1900, surgery $9100 (approximates).
Brand name thyroxine is preferred – more reliable.
10-12mc is considered a normal dose of RAI.
Controversy (b/w endo and patient) over when to adjust thyroxine dose. Don’t
adjust if the TSH is in the normal range. TSH will tell all.

Saturday – “Families Have Graves’, Too,” Sheryl Aycock-Anderson, M.A.
A family support group meeting that discussed the emotional side of GD.
Brent’s summary: Recognize that GD can increase the anxiety levels in a
family, and people deal with anxiety in different ways. Look at what you’re
doing as a spouse or SO in response to the increased anxiety, and why. Is
it helping or hurting the situation? The experiences of the spouses/SO in the
group varied from seeing no real differences in their family life to major
changes (It completely changed our lives!).

Saturday – “You Are Not Alone,” Adelaide Davis, J.D., M.A.
Used imagery to get us in tune with our bodies and GD. Played soothing
music and, at one point, had us imagine that we could talk to our body
parts/diseases. Imagery can help us feel better and relieve stress. I
had a hard time doing this one, because I’m too distracted by other noises
and my own thoughts. Also, I’m not real sure about imagery healing. Adelaide
had tapes available if people wanted to try it on their own.

Saturday – “Treatments for Graves’ Eye Disease,” Mark Codner, M.D.
A 35-year-old oculoplastic surgeon from Atlanta that knew his stuff! He
had *numerous* before-after pictures of GD patients and different surgeries.
Percentages of GD patients and eye problems: diplopia 45%, corneal exposure
34%, orbital inflammation 13%, compressive neuropathy(?) 9%.
Treatments: 84% use medical treatment, 39% do surgical treatment.
Surgerical treatments: orbital decompression only 12%, upper eyelid 82%,
lower eyelid as high as 59%.
The “hot phase” needs to be treated first before surgery, with a 6-9 months
“cooling” period. His clinic waits approx. 6 months between each surgery –
each clinic has different waiting periods. (Mayo waits 6 weeks.)
He gave us informative handouts on treatments for eye symptoms: cortisone,
radiotherapy, orbital decompression, and upper and lower eyelid surgeries.
This speaker brought back some memories of my surgerical days at Mayo.

Sunday – “Graves’ in Cyberspace,” Richard Guttler, M.D.
Dr. Guttler gave us a sort of personal tour of the thyroid and GD links on
the Internet. He spoke of his own page (www.thyroid.com), the NGDF homepage,
Dianne’s flaming, winking, blinking eyeball page, other personal homepages,
the association homepages, and many others. The best part of his talk was
when he read some of the email questions he had received and gave us his answer
and/or opinion. His answer to the healed v.s. cured question: You can be
treated for the GD symptoms and “healed,” but you will always have GD. There
is no treatment or “cure” for GD. (It’s a matter of semantics.)

Sunday – “Families Have Graves’, Too II”
People were more open and willing to share during the second session.
Everyone’s GD experience is unique.

Sunday – “You Are Not Alone II”
More imagery and tapes. I didn’t attend because I was visiting with a parent
about her 9-year-old daughter with GD. The teacher in me was surfacing.

Okay, that’s enough! My brain and hands are going numb! My last comment:
If you get the chance to go to a NGDF conference, go. It’s a worthwhile
experience that will strengthen and increase your GD knowledge. Plus, you
have an instant, ongoing support group for three whole days!!

Next year – Louisville, Kentucky in late July or early August. Mark your
calendars.

Wishing you health and happiness, Debby

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