"Ahhh where to start ??
6 years ago my menses would not start after I had stopped breast feeding my daughter..
My ob. noticed a lump in my throat when I leaned back and streached... TSH was
ordered and my ordeal was to begin....
First they did nothing... TSH was "within " normal limits....But after about a year the
lump was choaking me at night when I would lay down.. So I was put on lovothyroxine....
I was told to go on .1 but I thought it would be too much.... I agreed to .05 ... I
felt Ok then... But about a week later I felt hyper... My dose was then asked to be
Upped !!!!!!!!! I refused !!!!!! I told my HMO ( Such a dirty word lately huh ? )
I wanted to see an Endo...... They REFUSED ..
My doctor at the time was an internist. Meenwhile my BP went way up and I had palps....
Headaches and I couldn't sleep ........ I had to fight the administration to see an
Endo... I literally had to POUND my fists on their desk and tell them I wanted to go
to someone who specialized in this........ I finally got what I wanted.... Well sort
of.. I could go and Talk to the Endo .., but they could not do any tests of their
own.....How generous !!
When I got there, the first thing I was told was "to stop taking whatever they had me
on !!"" I was TOXIC... Too much TSH......I was then told to go immediatly to HMO and
have a TSH done then an uptake scan ... ( My TSH was less than .002 )
Well My doc. was not pleased that he was wrong !! ( Wrong to put me on lovothyroxine
when my original TSH was .5 ( Mind you now that is Point 5 ) Ok.. so far I had been up
and down fighting the level of lovethyroxine my doc. wanted me to take....BP was WAY
UP ... ( Put on Meds. for that too !! ) And I was having Horrendous headaches....
( Tried to put me on yet More pills for that too !! When the pharmasist told me a side
effect of the pill I was to take included Headaches, I said forget this.. The list of
side effects was VERY LONG !! )
So I get the scan done and it shows Hot nodule... SURGERY HURRY I was told..... No
biopsy .. no nothing.....Ok . I figured I would be a "good little patient" and go
through this....Unimformed as I was then..... We, my husband and I, were told it
would take about 1 and a half hours for surgery... 3 if the initial biopsy showed
cancer.. Well I was in the operating room for OVER 7 Hours !! My husband sat and
watched 3 open heart surgeries come and go before they told him I was done.. When he
asked what happened in there the Surgeon said and I qoute " Things happen"..
Needless to say I could not talk after this....My vocal cords on the right side were
paralized...( And we still to this day do not know what happened in there !! No one
will talk ) Ok. the Woman who did the surgery came into my room a day later to do a
follow up and when she realized I couldn't talk she did a double take.. ( I hate when
they do that !! ) She said and again I quote" Clear your throat" .. I whispered ,
"This is as good as it gets!!"...
Two days later I got a phone call in my Hospital room... It was the surgeon.....( Oh
Boy !! ) She told my they found cancer and I had to go back to surgery the next day to
have the rest removed.. After the shock set in I calmly whispered.." No I am not" ....
( I was not going to let her put me under again !! Especially not knowing what
happened in there the first time.. ) She tried to tell me "But I already have the
operating room signed in for you ....." I whispered I am not going.... Her response
to this was .." I will be up to the room at 5pm.. we will Discuss it,, ( Ha ha ) then"...
I called my step-mom and told her what had just happened... Still in shock from the
surgery , ( Which by the way , Hurt like Heck when I came out... I was in tears it hurt
so bad... Now mind you when I had my second C-section with my daughter. I was up and
walking around for a while not 8 hours later.. I have a very high tolerance for pain ),
and now the news of Cancer....
She came to the hospital and the Surgeon came not long after..... We all went into this
little room and the surgeon was talking about what time the surgery was to happen the
next day.....I whispered .." I am not going.. I am going home today"....The surgeon
said .." But you don't understand...." My step-mother said.." No it is you who does
not understand.. She said she is going home..... "
I walked out of the hospital and as I was the nurses were suprised .. "But you are
scheduled for surergy tomorow?? " No , I am going home...... Since when is it
customary to schedual for surgery without the patients consent???
I told my HMO I wanted to go to the hospital that specializes in cancer that is right
in our area.. They told me ... NO...... Again I was put on levothyroxine .. Up and
down ,,, Up and down.... I told my HMO I wanted to go to the hospital that specializes
in Cancer for a second oppinion.... I was told no..... I told them then I would see an
Onocoligist in their group..... "We have none" is what I was told.....I then Slammed
my fists, ( Very effective since this is the Second time I had to do this !! ) on the
Administrations desk and told them they were going to explain to my children if I die
that it was because of them...... Worked.. I got to go .. But again they were not
allowed to do any tests...... I had had no tests for Mets. at this point either....
there was capisular invasion on the path. report. Roswell Hospital's "finest" at he
head and neck clinic said there was no need for the rest to come out.. In fact this
guy told me ," If I was told I had to have cancer, I would pick this one.. You won't
die from it...." (Won't die from cancer left untreated? Sounds like an Oxymoron)
I had asked a few questions as I had been reading everything I could get my hands on
and he YELLED at me and told me.." I studdied 1000 case histories at John Hopkins
medical University. I know what I am talking about!!" ( I never questioned his
knowledge, I was asking about the high Blood pressuer being related to the TSH levels
at .05 ) ..
Back to the HMO.........Had a sono done at MY insistance and a few "small bumps" were
reported on the results.... Back to the TSH thing.. Up and down on Synthroid... Bp way
up..... Headaches continue........Felt awfull.......I finally was able to leave my
HMO and go to Roswell through another insurance... Well all they did for a year and a
half is make me wait in the waiting room for 3 and a half hours every time so I could
have my neck poked at by Med.students and ask the same dumb questions every time....
Then off I go .......No test other than TSH was ever done there.....
I finally got sick of that and changed to another Doctor.....I kept reading about
tests for mets. and wanted to know why I was not having them.... New Doc. was always
inaccessable....I had to see the "Newest" Kid in the group and they did the same.. Felt
the neck and sent me out the door... Always telling me my other problems had nothing
to do with my thyroid.... One day I went there because my heart was skipping beats....
( I did have a halter monitor before this and it showed about 4 hours of irregular
beats... Palps. at one point were up to 144 beats a minute for 4 minutes .. The doc.
told me to and agian I quote" Stop racing " !! I kid you not !! I was told to stop
racing !! I tried to explain that it was not me racing but my heart !! I was then told
to "Just stop racing !! "
So I go to my Medical center with skipped beats now....Too many for my likeing......
When he got into the room he poked and prodded the thyroid and told me to get a TSH
blood test done..... "But what about my heart ??" I asked... his response was " What
do you mean what about your Heart ??" I told him that was why I had come in there !!!
He said.. "Why didn't you tell me?? I am not a mind reader !!" This was YELLED at me of
course !! I explained that if he had read the notes from the nurses he would have
known ... ( Wrong thing to say I guess !! ) Boy was he mad now !! ( Tee-hee tee-hee>:-)
So I left there with an ekg done and nothing else.... I went home and called my
insurance company and told them I was changing my Doctor.... Not a problem they said !!
WOW !! I also told them what had happened and they want me to write a report about
him... I sure will !! I happened to find a Primary Doctor in the insurances list
that was ..a- feamale ... and b.-an endo !! Could I be so lucky I thought !!???
Yes I could !! She was taking new patients !! YIPPIE !!
So on my first visit she not only was OUTRADGED at the fact that I still had no tests
for Mets. done, she gave me a referal to a cardiologist.... ( I found out I have TWO
leaking heart Valves !! ) Bummer....... So .. As It stands.. 3 years later and after
many a fights..... I am scheduled for a body scan for mets. in two weeks..... My Endo
is working with my cardiologist, and my OBGYN to help me get to the bottem of all of
these medical questions that have been unanswered......Her opinion is that if it is
found in the thyroid, there is a 9 out of 10 chance it is already in the lymph's....
She was outragded that there was none taken for biopsy from the first surgery.... And
she was upset at the lax attitude of the doctors about thyroid cancers..She told me I
can die from this.. It can kill me..... I am hoping there is still time to treat it so
it doesn't.... So is my husband and my two children......."