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Personal Stories

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"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......."

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