Carolyn Jones - 06/23/98 19:13:55
My Email:carolynj@erols.com
Where are you from?: Northern New Jersey
How did you find these pages?: Search on Yahoo
Are you a regular visitor here?: not yet, will be
Do you have Graves' Disease or related?: yes
Comments:
Thanks for all the information on your page. I just found out yesterday that I have Grave's.
I'll be starting treatment next week after a few more tests and it's interesting to see what
you've gone through. I'd appreciate any suggestions you have. I see that you say Wellbutrin
and Buporpion are the worst for hyperthyroids. What are the best drugs? Thanks for the
information and good luck with your new job. Carolyn
Dobbie Roisen - 06/23/98 04:44:06
My Email:dobbier@aol.com
Where are you from?: California
How did you find these pages?: link from Diane's page
Are you a regular visitor here?: first time
Do you have Graves' Disease or related?: Graves plus Eye disease
Comments:
I was told in 1988-1989 that the hot days and stress incontinence was due to menopause if not
just in my head.!. This was joined by occasionally falling asleep (nodding off) in overly warm
meeting rooms, theaters after very nice dinners, in my husband's cushy recliner. My family also
told me that I snored but no one ever said that I stopped breathing at any time. Finally in
early 1997 my boss mentioned that people had seen me falling asleep at work (tech writer on a
computer all day long). After seeing my family doctor, I was referred to a sleep disorders
clinic where I was diagnosed with sleep apnea. The treatment for this is to sleep with a
machine blowing air down the throat to keep it open so that you breathe normally. After only
one night, I stay awake (even in boring meetings) and the stress incontinence STOPPED!.
But... I noticed some other symptoms. A stretching feeling in my throat, a dropping of my
voice pitch, and a "lump in the throat feeling". I mention the sleep apnea for two reasons;
one, while you may not know you fall asleep when you think you are awake, you sure do notice
stress incontinence, and two, the sleep apnea apparently covered up the thyroid condition. I
mentioned these to my sleep doctor over a few months of follow-up but he did not seem to have
noticed these symptoms in other patients--I was just different. Finally in Oct-Nov 1997 I saw
my family doctor. She suspected heart or thyroid. My husband had looked at my throat while I
swallowed (due to a newspaper article in October 1997) and saw nothing. Meanwhile, my
optometrist sent me to an ophthalmologist for glaucoma (several different eye drops are
keeping it under control so far) My family doctor put me on a small dose of diuretic and
beta-blocker to control the high blood pressure (and heart trouble) until cardiac tests were
done. It apparently "cooled down" the thyroid also, but it stirred up my childhood asthma. At
this point the cardiologist said that my heart was normal. I was taken off the beta-blocker,
left on the diuretic. The endocrinologist, after a Iodine uptake scan, put me on PTU. After
blood tests, said that my blood levels were mostly normal. I was switched to a very minor dose
(5 mg)of methimazole. Three months later I was feeling almost worse than ever, internal
jitters, hot all the time, headaches, sense of increased pressure in my head, sinus headaches
without plugged up sinuses and the "lump-in-the-throat" feeling. The symptoms would go from a
1-1.5 if I was a couch-potato to a 6-8, on a scale of 10, if I tried to do anything such as
walk, with my purse, out to my car to drive to work. My eyes were not noticeably involved in
October, they are inflamed, red, and popped out about 1/4 inch passed my eyebrows now. After
the endocrinologist had me have an MRI done on my eye orbits, I was referred to an
ophthalmologist and a radiologist who both specialize in Graves Eye Disease. They are
recommending eye muscle irradiation to shrink the eye muscles. Taking at first 2 aspirin 4
times a day and now 1 aspirin 4 times a day has kept my eyes comfortable (aware of the limits
but no pain) throughout the full range of motion. (This was my idea after it worked for
tendonitis in my heels.) Misunderstanding my repeated comments about the "lump-in-my-throat"
feeling as a report of an actual feeling of a lump, rather than an analogy trying to compare
something to this odd feeling I was having of something under my skin, in my neck, etc., I
was sent for a barium swallow test. Gee, there was no lump there !!! Standing near-sightedly,
without my glasses, in front of the bathroom mirror, I can see a goiter. And the way I was
feeling made me work harder to get the doctor to understand. I think I finally connected. My
endocrinologist has doubled my methimazole not quite a week ago. I feel better parts of the
day (for several hours after each pill)and then back to the old worse feeling (a few hours
before the next one. I have just had a pulmonary flow loop test done to see if the thyroid is
compressing the trachea (h, lump in the throat), I am due for an thyroid ultrasound scan soon.
I'm scared and worried about the eye irradiation. I've never known anyone with hyperthyroid
disease much less the eye disease. I can't find any patient accounts of their experiences with
the eye radiation treatment either during and/or after so I don't know what to expect. If
anyone who reads this would like to email me, I'll try to read my email more often.
Wanda - 06/22/98 20:28:09
My Email:wandywanz1@aol.com
Where are you from?: Louisiana
How did you find these pages?: yahoo
Are you a regular visitor here?: first time
Do you have Graves' Disease or related?: yes i have it
Comments:
Hi. I was just diagnosed this week and feeling like no one understands. My husband is a
physician and when I would complain of symptoms he would act like I was a hypochondriac. Very
disheartening. I'm very thirsty,my skin is so thin I bruise with barely a touch, my heart rate
has gone up to 160 but rests at 120, I have lost much weight, have battled with diarrhea,
almost anything wears me out, I talk incredibly fast and am always anxious and much, much more.
I am very concerned about taking Tapozole due to its side effects and am seriously considering
radioiodine. Can anyone tell me please will being treated for hyperthyroidism keep me from
developing opthalmopathy? I'm feeling very down and would appreciate any correspondence. Thank
you for a great site, Wanda
Donna L. Beidleman - 06/22/98 17:41:29
My Email:bei@ornl.gov
Where are you from?: Knoxville, TN.
How did you find these pages?: Yahoo Graves Disease
Are you a regular visitor here?: No
Do you have Graves' Disease or related?: Yes
Comments:
I did not have time to read everything but I did print off some info to read later. I am 42
years old and has had Graves Disease since the age of 12. I was diagnose with vitiligo at
that time. At age 32 and after my second child I was diagnosed with Graves Disease. I don't
feel so along right now! Thanks a lot, Donna
Meejin CHA - 06/22/98 07:46:30
My Email:meejincha@hotmail.com
Where are you from?: South Korea
How did you find these pages?: Throgh Yahoo
Are you a regular visitor here?: No
Do you have Graves' Disease or related?: Yes
Comments:
I've taken a medecine for a year and now I quit taking a tablet(propylthiouracil) due to my
doctor's prescription. I'm 25-year-old woman and my weight is fluctuate. Unfortunately,I feel
my body goes back to the first time when I found my disease,Graves disease. Rapid heart
bitting, lots of sweat,trembling hands,tireness and so on. I was told to wait until the fuction
of my pituitary would be normal. But I feel my disease is getting worse. Pleas let me know if
there is any good treatment phisically not chemically!!
Janet - 06/22/98 03:50:42
My Email:physed30
Where are you from?: TN
How did you find these pages?: looked up graves disease
Are you a regular visitor here?: first time
Do you have Graves' Disease or related?: Yes, I do
Comments:
I read your intiial story. It sounds a lot like what I went through for so many years. My
life was filled with so much stress that I always thought that may have caused this disease.
I am in remission again. I had a child and went through a very stressful pregnancy because I
came out of remission and had to take the PTU after my doctor warned me not to get pregnant
while taking it a year earlier. But then she said it was ok. 3 weeks before I was due....
"they" saw a goiter on the ultra-sound. I was hysterical. They induced labou the next week.
We did not know what to expect. It was a miracle, a red-headed baby boy with no goiter and in
perfect condition. I have learned that I should not always believe what the doctors say or see.
I am now on synthroid because my antibodies are killing my thyroid. I have just started seeing
an endocrynologist. I should have insisted in seeing one years ago. My family doctor did not
seem to know what she was doing. My levels are fine but I am still very emotional. It is hard
to know what is physical and what is psychological when you have this disease. I will read
more about your story and others later. Thank you!
Barbara Gardner - 06/21/98 18:37:38
My Email:sscssc@win.bright.net
Where are you from?: Port Wing, Wisconsin
How did you find these pages?: Searched the net
Are you a regular visitor here?: Since I found you
Do you have Graves' Disease or related?: Yes
Comments:
I don't have time to talk today, but I will be getting back to you. I have a tale to tell that
went on for six years! Ain't we got fun?
Jenna - 06/21/98 16:42:15
My Email:Paultheboatman@usa,net
Where are you from?: Canada
How did you find these pages?: Search engine
Are you a regular visitor here?: yes
Do you have Graves' Disease or related?: Graves Disease
Comments:
I just wanted to say,how much I appeciate a site such as this on Graves disease.I have lived
with it for 4 years now.Although not as long as you have.Its nice to know there are other
people out there who understand how this disease affects the body in many ways. I suffered
with it for a year,not because it was undiagnosed because the doctor didn,t seem to think he
should rush my count was 244 I finally went to a hosipatl emergency and demanded care, By this
time I had went from 139 pounds to 90 pounds.Now happy to say I,m a lot better.I just wanted
to say thanks for making a site on thryriod your story is an inspiration to me,and probebly
many others. God bless you. Jenna.
Kris - 06/21/98 01:26:18
My Email:Kris.Teach@gte.net
Where are you from?: Halstead, KS
How did you find these pages?: Search
Are you a regular visitor here?: First time
Do you have Graves' Disease or related?: My cousin was just diagnosed
Comments:
Thank you so much for the information! My cousin was recently diagnosed and is now facing the
decisions that have to be made. You are proof that there is plenty to learn about and that
there is always hope!
Josephine Taylor - 06/21/98 01:18:51
My Email:billtaylor@bigpond.com
Where are you from?: Brisbane, Australia
How did you find these pages?: Search Bigpond
Are you a regular visitor here?: NO
Do you have Graves' Disease or related?: Mother has it
Comments:
My mother who lives in England has beem diagnosed with what we feel is Graves disease and we
are doing some research to see what we can find out about it , its symptoms and prognosis. Can
you provide any information source. I hope you can help. Thanks Jo Taylor