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Personal Stories

Written by
Robin Yeska - RedBird

"In January, 1995, there was a hepatitis scare at one of the places I worked.  (I had four jobs at the time, which was probably symptomatic in itself!)  I had been feeling pretty lousy for at least a couple of years.  I'd been having difficulty sleeping, feeling nervous and jumpy, having lots of difficulty concentrating, and I was extremely irritable.  I also had been experiencing a rapid heartrate and had a rash on my face.  I went to my GP to be tested for hepatitis and complained about all of these symptoms and told him I'd been having these troubles for a couple of years.  I also told him my daughter had noticed that my hands shook.  He asked if I had been "under stress," and I replied that yes, I had.  He ordered hepatitis tests, and then the nurse told him she'd observed that I was experiencing tachycardia (i.e., rapid heartrate,) and she asked him if he wanted to test my thyroid levels.  He told her, "No."  However, apparently that nurse had an idea about what was going on with me because when I got a copy of my test results, a thyroid screening HAD been done.  At the time, I was familiar only with the T4 test.  My T4 level at that time was 11.7, which was within the "normal" range (barely) of the lab where the tests were performed.  I have since learned that "normal" levels differ from lab to lab, and high levels can begin anywhere between 11.5 to 12.0.  However, the FTI test result was 15.4, which was above the indicated normal range of 5.0-12.0.  The FT4 was 2.47, which was also above the indicated normal range of .71-1.85.  In addition, the TSH result of "less than 0.1" was below the normal range of 0.3-5.0!  In fact, the lab had handwritten in the "less than," which in retrospect, indicates to me that my TSH was unmeasurable even then.  However, since I was only familiar with the T4 test and the doctor's office assured me that all my test results were "normal and nothing to be concerned about," I did not question them any further at the time.  The doctor's office also informed me that my cholesterol le ONLY positive effect of hyperthyroidism.)

My GP's misinterpretation of my thyroid test results would be bad enough if the story ended there.  Alas, there's more:  One week after I saw the GP, I was scheduled to see my gynecologist for my yearly exam.  During the exam, I told my gynecologist about the symptoms I'd been experiencing.  He seemed genuinely concerned and ordered a complete health screening.  I told him I had had some hepatitis tests ordered by my GP the previous week but the GP had not ordered thyroid tests (at that time, I still didn't know that the nurse had ignored the GP's orders and had ordered the thyroid tests anyway.)  The gynecologist assured me he would order thyroid tests.  Well, I never heard from the gynecologist's office in regard to my test results--didn't get a phone call or a copy of my results in the mail.  From previous experience, I assumed this meant no problems were detected, and since these tests were run only a week after the first set, and since I had been told that the first set was "normal," I didn't ask about the results of the second set of tests.

FAST FORWARD TO MAY, 1995:  Five months had passed since my GP had pronounced me completely healthy.  In May, I ended up in the emergency room at 2am with the following symptoms:  rapid, irregular heartrate; difficulty breathing and swallowing; difficulty sleeping; and chest pain.  I thought I was most certainly having a heart attack, but the ER doc told me I was experiencing an anxiety attack.  He prescribed a few doses of Xanax and instructed me to schedule an appointment with my GP within a week.  I followed his instructions and scheduled an appointment.  During the appointment, a nurse took my blood pressure which indicated my bottom number was 96 (this was high for me, especially since I had taken to power-walking 10 miles a day in a futile attempt to make myself tired enough to sleep!)  The GP stated that he agreed with the ER doc and diagnosed me as having "anxiety disorder."  He prescribed Paxil, which I took for a few days, but which worsened the heart palpitations I was already experiencing.  Next, he prescribed Buspar, which I took for approximately two months.  After two months, the Buspar appeared to be giving little or no relief of my symptoms and was making me dizzy.  Therefore, I stopped taking the Buspar.  The GP apparently didn't bother to look at the January test results in my file.  If he had done so, he might have corrected his mistake then.  But, nooooooo.........

Between May and November, 1995, I continued to have all of the above-mentioned symptoms continuously.  I went to bed each night and was unable to sleep more than 2-5 hours per night because my pounding, rapid heartbeat was so loud, I could not ignore it.  Some nights, I didn't sleep at all.  In addition, my heart "skipped" a beat several times a minute, and the next beat after the skipped beat was extra-strong, causing a sinking feeling.  During this time, I had no need to "take" my pulse--I could simply count the pounding beats I felt, heard, and SAW in my arms, legs, stomach, chest, and head. The experience was horrifying because every night I was sure I would not wake up in the morning--I was sure my heart would give out.  Every morning I awoke to my alarm (if I was able to sleep at all) feeling very tired but very grateful to be alive.

During this time, I had thoughts of suicide.  I believed I had "anxiety disorder," a mental disorder that I would have to learn to "live with."  I could not imagine "living with" these symptoms for years.  It actually gave me some measure of comfort to think of suicide as an option.  I have two daughters, so I usually pushed the immediate thoughts out of my head by thinking of the need for me to continue working so they could go to college.  But I continued to think of suicide as a logical option to be considered at some point in the future.

During this time, my performance at my jobs began to deteriorate.  One of my jobs was teaching classes for patients at a psychiatric hospital, so being diagnosed as having a mental disorder and observing that I had the same shaky hands and unblinking stare as many of my students sure didn't do much for my vision of my future!  I was having so much trouble concentrating and was so anxious that after working for two hours, I would have to restrain myself from running out of the building screaming!  I became unable to do any public speaking, even in meetings I'd attended numerous times in the past with no difficulty.  I would try to talk, but I could not get enough breath, and my heart would pound "out of my chest," so the words would not come out.  I resorted to wheezing, "I'm sorry.  I'm not feeling very well today."  My boss would then come to my rescue.  Boy, did I feel like a major basketcase!  About the same time, a set of group pictures was taken at the hospital at which I worked.  About 20 pictures were taken, and I blinked in EVERY SINGLE ONE.  This caused my boss to take me aside and talk to me about "increasing [my] self-esteem."  Of course, now I know the blinking was probably a result of my eyes being extra sensitive to light due to Graves' Disease.

FAST FORWARD TO NOVEMBER, 1995: My symptoms had gotten progressively worse, and I was feeling very weak and having muscle pain and cramps.  I was only sleeping about two hours every night.  I had huge purple bags under my eyes, and my hair was breaking off, turning gray, and falling out.  One day in November, I happened to stick my arm in one of those blood-pressure cuffs at my pharmacy.  The bottom number was 110.  It was a EUREKA moment.  I finally decided there HAD to be a physical cause for what I had been experiencing for so long.  I decided that if I had been experiencing "anxiety attacks," the word "attacks" would imply that they happened intermittently, not continuously as I had been experiencing.  I called the gynecologist's office and asked them to re-check my thyroid results from nearly a year earlier.  A couple of hours later, a nurse called back and said, "I've checked your results, and you were hyperthyroid is January.  The doctor signed the first page of the report, but he didn't sign the second page, so he must not have realized there was a second page.  We want you to come in right away so we can start getting this taken care of."  My first reaction was RELIEF and EUPHORIA, and my first words were, "THANK GOD.  YOU MEAN I'M NOT GOING NUTS?"

After finding out the results of that set of tests, I read all about the different thyroid tests and realized that my GP had not just overlooked my test results--he had misread them!  I called his office and asked them to re-check those results.  They called back and said the tests had been "normal."  When I quoted from information I had read indicating the tests results were decidedly NOT normal, the nurse finally gave in and admitted the results had been a "little high," but, she added, "Doctor doesn't like to regulate his thyroids that closely."  EXCUSE ME, WHOSE THYROID????? What an education!  I am no longer a docile, compliant, wimpy healthcare consumer.  I now demand a copy of all my test results.  I've taught myself to read them correctly.  I now scream (and kick, if necessary) to get the kind of care I feel I am entitled to.  I had to diagnose myself once, and if the need arises, I will do so again.

By the time I was correctly diagnosed, I was one sick puppy.  My TSH was unmeasurable; my T4 was 16.8.  I had a goiter and shook like a leaf.  My whole body twitched with every heartbeat.  My resting heartrate was 144 beats per minute.  I could have died, but thank goodness, I'm alive and kicking thanks to propranolol, RAI, and Synthroid. I'm now experiencing the hypo side of Graves' Disease, which is no fun either, but I'm alive and am able to function reasonably well.  Thoughts of suicide are history.  My family has forgiven me my erratic, pathetic behavior during the hyper years. But we all have not and will not forgive the medical establishment for the grievous errors they made which caused our lives to be hell for so long!  I've since educated these two doctors (the GP got a four-page letter.)  My hope is that at least these two doctors will be less likely to dismiss hyper symptoms as "anxiety disorder" or "stress" in the future.  I I gain some comfort in the knowledge that my experience may help others avoid the potentially deadly "misdiagnosis-merry-go-round."  I have read that 2% of women get Graves' Disease in their lifetimes.  That's one-in-fifty, folks!  A disease this prevalent should be prominent in the minds of healthcare professionals who encounter patients experiencing hyper symptoms.  Graves' Disease, however, continues to be underdiagnosed.  This will change only when we, as patients, become vocal and proactive when dealing with the people WE PAY to provide our healthcare."

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