[Anonymous]

#1165396

Hi MLC. . .I would love to add this story to my home page. Will you please send me an email, so we can discuss it? (click on the red, underlined “Dianne N” on the previous page. I can have it on there in short order (it’s not something you could do yourself), but would like to find out some of your personal preferences and such. I’ll look forward to hearing from you.
Dianne N

[Anonymous]

#1057186

TO: Members of this BB
I tried to figure out how to put this on Dianne’s homepage but I’m
not at all skilled at using this Internet so I’d like to share some of my
experiences with you here. I was diagnosed with GD in August of ’95.
In retrospect, I can trace obvious symptoms back as far as 19989 or so,
but I never put 2 & 2 together. This was disturbing to me because I have
a Master’s degree in Nursing and at the time of diagnosis, was on faculty
at a university School of Nursing. I was prompted to go to my family
doctor because of what I believed was asthma. I was 41 years old and
had “outgrown” asthma as a young child. What I had turned out to be
full-blown congestive heart failure, secondary to thyroid storm. Again, I
believe I would have probably recognized this is anybody but myself!
I got put in ICU where it was discovered that I had almost no bloodcount.
This, I later learned, was a direct side effect of acute, progressive GD as
the red blood cells form but cannot mature due to hypermetabolism. I
also had all the other classic symptoms such as weight loss (approx.
60 lbs. over three years), unrelenting insomnia, rapid heart rate (my
resting pulse at the time of admission was running between 148-160,
extreme shortness of breath upon exertion, tremors, etc. While I had
noticed all of these symptoms, I conveniently chose to ignore them,
attributing them all to stress. I ended up receiving six units of blood
immediately, which alleviated some of the tachycardia and shortness
of breath right away. Then, I was fortunante in having a really sharp
family doctor who called in reinforcements right away. My endo is
the same endo who treated George and Barbara Bush for their GD, so
although I’ve come to realize he tends to be on the conservative side,
he is extremely knowledgable and credible in his treatment. I was
treated right away with RAI, as he felt the situation was so far out of
control he needed to take definitive action. About ten days later, I went
through another thyroid storm secondary to the escape phenomena that
sometimes occurs after RAI. No fun at all! The next six months I remained
on a metabolic rollercoaster while my levels tried to settle down from being
out in the ozone. My T4 at the time of diagnosis was 78; TSH – O. I
had a great deal of difficulty getting the congestive heart problems under
control in spite of being seen about every 2 weeks by a cardiologist. I
was on large doses of Tenormin and diuretics. Finally, just after New
Years ’96, things seemed to settle down. I had gone back to work at
the school after having been on sick leave since August. I was having
problems with diffuse muscle aches and weakness in my arms and legs.
My alkaline phosphatase was in the ozone. Fractionated lab values
determined this was coming directly from bone tissue; yet another “happy
side effect of GD because like the blood values, bone cells were being
formed like crazy but never got the chance to mature due to the hyper-
metabolic state. In mid-February of ’96 it all hit again. My endo said it
was similar to a raging fire that you think you extinguished but have only
suppressed. Every symptom came back, including the CHF (heart failure).
I received a second dose of RAI, and now, nearly a year later, my TSH
remains very depressed, and my T3 and 4 are starting to creep up a-
gain. My endo is beginning to talk about a third round of RAI if the levels
don’t stabliize, something he says he’s only had to do with 3 patients in
over 30 years of his practice. I’m NOT happy. I have severe eye
problems – double vision mainly at night and in the early morning, and
CONSTANT tearing which is driving me crazy. I had my eyes irradiated
last September to try to control the inflammation and bulging. I cannot
really say if the radiation has helped all that much. The opthamologist
tells me it takes at least six months to determine theraputic effect with
orbital radiation so I’m on hold with that. I am by no means a fount of
knowledge about this disease but I have access to and read all I can
get my hands on and would like to keep up the communication with
others who are experiencing the myriad side effects of this disease. My
sense is you have to “be there” to appreciate what we’re going thru with
all this. I have frequent days where I feel for lack of a better word, really
zoned out mentally. Wonder sometimes if this is true clinical symptomatology,
or if I’m just turning into a nut bar! I’ve also had problems with weight
gain. Can’t seem to lose weight no matter what I do. It’s very demoralizing
to feel such lose of control. Eager to hear any replies to this diatribe.
Hope I haven’t been too long-winded or taken up too much space on
your BB. Thanks!

[Author]

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