[Anonymous June 21, 1996 at 10:47 pm Post count: 93172]

#1058620

I have started a support group for people with Graves
disease. Graves disease is a autoimmune disease of the
thyroid gland. We are sponsered by the National Graves
Disease Foundation. We meet every fourth Wednesday
starting 24 July at Holmes hospital in auditoriums B
and C. Drop an E-mail and give your e-mail address or
phone number and I will contact you.
Regards,
Jake George

[Anonymous July 11, 1996 at 9:12 am Post count: 93172]

#1169017

My brother John has been diagnosed with Graves Disease. I would be interested in discussing his situation to see if you have information that may help him. He lives in upstate New York and does not have convenient access to the internet. I can be his messenger for the time being.

[Anonymous July 12, 1996 at 12:02 am Post count: 93172]

#1169018

My phone number is 408 241-3231
Where is Holmes Hospital? I live in Santa Clara, CA
I was told in June I have Graves and am currently
on PTU and would love to be a part of this group.
Thanks.

[Anonymous July 13, 1996 at 12:55 pm Post count: 93172]

#1169015

My mother was diagnosed with Graves Disease last year and has ungone the RAI
treatment. Of Course, after that they put her on thyroxin (synthoid) since, then
they seem to continually be changing her dosing regimen. I am a HIV+ male and I truly understand dosing. She is suffering, and miserable.
Is this normal. One question is the activity of a person affect doses of the drug? Better yet, how will excessive exercise, and lack of exercise
react with throsyn dosage.
If you can help me find the answer to these I will report back with our findings.
***************************
Ron Sageser
PoB120
Richland, SC 29675-0120
RED280ZX@aol.com
******************************

[Anonymous July 15, 1996 at 3:02 pm Post count: 93172]

#1169013

Recently diagnoised. Interested in asking questions.

[Anonymous July 15, 1996 at 8:11 pm Post count: 93172]

#1169014

Hi:
Does your Mother have eye problems also ?
I had a thyroidectomy last November and developed double vision in January. There are so many different problems related with Graves.
I have not been able to find anyone that has
double vision.
Be patient and understanding. It is frustrating to everyone involved… Dot

[Anonymous July 18, 1996 at 4:33 am Post count: 93172]

#1169012

An eye specialist is 99% sure that I have a mild case of Graves Disease. My left eyeball is not permanently bulging but I have occasional “attacks” when my eyeball becomes extremely prominent, the eye waters profusely and is extrmemely painful This symptom occurs sometimes once or twice in a period of six weeks and lasts approximately 24 hours. Do any members of your support group suffer similar symptoms? I would be extremely grateful to hear from you.

[Anonymous July 26, 1996 at 8:19 pm Post count: 93172]

#1169011

Claire,
        What you discribe is very common in Graves patients. I suggest you get to an endocricologist
to have your tsh and Th3 TH4 levels checked.
Send me an E-mail and I will send you some further information
REgards,
Jake George

[Anonymous July 27, 1996 at 10:04 am Post count: 93172]

#1169010

Dot, The address is NC not ND,
JAke
        I have double vision as well> it is a very common problem with Graves. I run the Support group
in Melbourne Fl. Most of the group has had problems with double
vision. Send a self addressed stamped envelope to the Nation Graves Disease Foundation,
2 Tsitsi Court, Brevard, NC 28712 and we will get an info packet out to you in the mail.
Regards,
Jake George

[Anonymous July 29, 1996 at 6:20 pm Post count: 93172]

#1169008

Do you know of any support groups in the Marin
county area? Marin County is just north of San
Francisco. I not only have Graves’ but am also
finishing up my dissertation in Clin. Psychology
on Graves’ disease and stress. As a psychologist
I am interested in perhaps (one day) starting up
a support group, if there isn’t one now in the
area. If there is one, they might be interested
either a presentation or perhaps participating
in the study (which is supported by the largest
HMO in California, Kaiser Permanente.).
Hope to hear from you. Ann

[Anonymous August 3, 1996 at 10:44 pm Post count: 93172]

#1169009

I was recently diagnosed with Graves Disease.
Previously I was being treated by a dermatologist
for a terrible skin rash. After $100’s and much
frustration, I switched Drs. The new Dr. said it
was thyroid right away.
Has anyone else had the problem with a rash? I
know they talk about problems on the lower legs
but mine extended to almost every part of my body
but my face.
I know of no support groups in our area; South East
PA.
I also seem to have some vision problems although
not bulging eyes as is common.
Please E-mail.
Thanks!

[Anonymous August 10, 1996 at 2:16 pm Post count: 93172]

#1169004

I don’t know of any support groups but would be interested in participating in one if the overall interest is there.
I’m in the East Bay I have graves ophthalmopathy and believe I am still hypothyroid,
I’m also in the Kaiser system.
Let me know if you have any further information.
Thanks

[Anonymous August 10, 1996 at 3:09 pm Post count: 93172]

#1169005

Tell me more about your support group. I have a neighbor with Graves disease. Where are you located? We are in Alexandria, VA.

[Anonymous August 10, 1996 at 5:10 pm Post count: 93172]

#1169006

please send info packet and info on nutrition and diet. i have severe graves opthalmopathy and have 5 surgeries and radiation treatments. more surgery is indicated at this time. have gained lots of eight with long term prednisone treatments. i need information. thanx

[Anonymous August 11, 1996 at 6:19 pm Post count: 93172]

#1169007

Thanks for the response. Its good to know I’m not
the only one out there (I was beginning to worry)!
You said you were diagnosed 3 years (?) ago? Its
been almost a year since the rash started. It never
totally clears up but has its good and bad times.
I’ve been using kenalog cream/ointment with pretty
good results. Some of the things you can’t use for
extended periods of time (more than 2 weeks). My
first dermatologist didn’t tell me that though. The
second one did and the endocronologist. I’m due to
go in on the 30th. I don’t feel sick though. All
the literature they give me tells me a few weeks
after starting the Tapazol you should feel better,
my initial complaint is still the rash although they
tell me my blood counts are WAY WAY out of wack.
Keep in touch!
Thanks!

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