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Anonymous
September 5, 1996 at 2:54 pmPost count: 93172you might be able to get some information from the
Thyroid Foundation of America in Boston. Their
phone number us 1.800.832.8321. They are very
helpful and might have some information on the
Male Species. Good luckSeptember 5, 1996 at 3:21 pmPost count: 93172Bob,
Drop me a line or give me a call at 407-254-9719 and I will
return your call collect. Graves has some strange affects
on men. We have the same problems the wopmen do but our
“manhood” affects how we deal with it. My Graves was diagnosed
by the military too. Look forward to hearing from you.
JAkeSeptember 8, 1996 at 11:18 pmPost count: 93172Hi Doris!
I could not find a support group in the area where I live, BUT this
message board had been a great way to get support. Mostly
everyone who e-mails here can share their experience and be
very helpful! Just know your not alone!
KatieSeptember 8, 1996 at 11:18 pmPost count: 93172Hi Doris!
I could not find a support group in the area where I live, BUT this
message board had been a great way to get support. Mostly
everyone who e-mails here can share their experience and be
very helpful! Just know your not alone!
KatieSeptember 9, 1996 at 7:01 pmPost count: 93172I hope I’m doing this correctly! I was diagnosed today with Graves.
I really don’t know much about it yet! What should I expect with
this???Thanks
Lisa :>September 9, 1996 at 9:56 pmPost count: 93172Hi Lisa:
I’m relatively new too with this Graves Disease. I was diagnosed in June.
What kind of symptoms did you have?
Many days I still can’t believe I’m sick, guess I’m one of the lucky ones.
I don’t have eye problems as many of the people here seem to experience.
What about you?
My Dr. wants me to do an “atomic cocktail” but I’m debating.
Still too new with this. I worry that I’ll be sick before they get done
with me!
Tell me about yourself.
Hang in there, the people here are super!Joann
September 10, 1996 at 6:41 pmPost count: 93172Thanks so much Joann for answering me. I feel really lost right now
even tho my family is very supportive! I’ve been pretty useless the
past few days, crying all the time. I hope that stops soon. My
symptoms include heat insensitive, itchy, weight loss then gain and
feeling really down. I started taking PTU today and also propranolol
for my racing heart. I’m also seeing an eye doctor on Thursday. How
are you dealing with Graves?
Thanks Joann, you really helped :>Lisa
September 10, 1996 at 10:02 pmPost count: 93172I am post RAI as well. Five years infact. Although the blood levels are normal, I still FEEL hypothyroid. I wonder how accurate these blood tests are? I am in the process of looking for another Endocrinologist. I also wonder how common it is, to have this much trouble getting back to normal after the the RAI. Hope you are able to get your second opinion as well!
DebbieSeptember 11, 1996 at 6:52 pmPost count: 93172Hi Lisa!
As I said, I’m relatively new at this too but let me tell you, I checked out the
page last nite for the bulging eyes .. scared the tar out of me.
I was on the fence about the atomic cocktail but I called the Dr. today
to schedule it.
I had a horrible rash, started last year right after Thanksgiving. I went to
a dermatologist and they gave me some cream to put on it. They also put me on
a steroid burst that did nothing. I was in there week in and week out
to no avail. They did patch testing and sent me to a large medical center
about 50 miles from here for testing. They did more testing and found after
4 days I had a reaction to nickel.
Yea right! If I was alergic to nickel to the degree my body was covered
with the rash, it wouldn’t have taken 4 days to show up!!!
So back to the Dr. I went for another few months. Finally when he told
me to do things I thought were out and out stupid I changed Drs. I had
tried to get into this woman dermatologist before but she wasn’t
accepting any new patients. I guess the day I called I was so upset and
fortunately a caring sole answered the phone and that was the beginning.
I saw her ONCE and she said, its not a nickel reaction, she suspected
Thyroid.
My endocronologist is a woman also, which helps I think. I was diagnosed
in June. She put me on Tapazol, 2 tablets a day. I was just in again after
being on the medication for 9 weeks. My stats have changed and now she
recommends the “atomic cocktail”.
I was debating about it but last nite I looked at Debbie’s (?) home page
and that did it for me.
I had some vision problems (things were badly focused) but never the double
vision many people have experienced. I consider myself awfully lucky.
I constantly craved salt and somedays it appeared I ate non stop. I did
put on some weight (which I definately didn’t need).
I’d like to hear from you via E-mail but not sure I want to put my
address on the net for the whole world.
Sadly, I’m pretty net at this NET Thing so I don’t know if there’s anyway
to do it.
Please stay in touch, I’m anxious to know how you’re doing.
I apologize for the long winded note, there’s just so much to say.
Take care.
JoannSeptember 11, 1996 at 10:25 pmPost count: 93172sep 12, 1996
WAS DIAGNOSED WITH GRAVES DISEASE AUG 95, TREATED WITH RADIOACTIVE IODINE
NOV 95. AM NOW EXPERIENCING GRAVES EYE DISEASE. MY RIGHT EYE IS BULGING.
AND IT IS VERY DISTRESSING!!!! DO YOU HAVE ANY INFO AND SUPPORT???September 11, 1996 at 11:01 pmPost count: 93172Question: Would like to know more about X-ray therapy to reduce
swelling of the tissues. I had come across some info on the net
from Stanford about how 80-90% of their pts. treated with the
X-ray therapy had regression of their eye problems. And according
to that source since the X-ray actually kills the lycosomes,(those
white blood cells) that causes the tissues to swell that their pts.
don’t seem to have further problems? I can’t find it on the net
anymore but am curious, esp. since someone had mention that Barbara
Bush had it done. Why isn’t done more? That orbital decompression
sounds too scary. Also I am 36 and an RN who used to work critical
care. An endocrine M.D. once told me that there seemed to be a
high percentage of RN’s with Graves. Coincidence? One last question-
Any support groups in the Denver area?September 12, 1996 at 2:05 amPost count: 93172HELP !!!!!
I was just diagnosed with Graves’ today. The first thing I did was to get
on the net to find all the information I could.
I am 32 years old, female, mother of 7 month old boy. I find this whole
diagnoses perplexing. I am about 60 pounds overweight already and this
whole fiasco came about because I was on Phen-fen. I really exhibit
no symptoms of Graves’ at all except trembling fingers, which I
understand is also a side effect of Phen-fen.
What I have been reading here is scaring the hell out of me !!!
At 5’1″ I can not afford another pound on my body.
I have been presented with the usual treatment options. Frankly
given a choice I wouldn’t do anything about it at all, but I understand
that is not really an option.
I would appreciate any feedback, scary or not. I have never known anyone
with this disease. I really didn’t want to be the first on my block.
Thank you very much.
JanaSeptember 18, 1996 at 7:31 pmPost count: 93172Debbie,
I hope you get to feeling better. If I were you I would switch doctors; he doesn’t sound sympathetic at all. I recommend calling the Thyroid Foundation of America at 1-800-832-8321. There is also another thyroid organization and the Thyroid Foundation can give you their number.
Have you read any thyroid books lately? Do you have a copy of you medical records or lab results of TSH and T4? Check these things out. Go to the library and get a good current thyroid book. Call the lab and get copies of your blood work. You have a legal right to them!
Good Luck,
SusanSeptember 25, 1996 at 3:26 pmPost count: 93172My thirty-five year old sister was diagnosed with Graves Disease
two years ago. During the onset of her illness, her husband of
seven years, served her with a subpoena which asked her to leave
his parents’ house, without their two sons, age 3 and 2, because
she was not able to care for her children.He then sued her for divorce and full custody of the children. He
claims she was mentally ill during this illness and would not acknowledge
Graves Disease.I’m trying to find anyone who may have experienced a divorce and
custody battle due to illness, i.e. Graves Disease or similar.
Thanks.December 17, 1996 at 2:28 pmPost count: 93172please add me to your list.
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