Graves Eye Disease and Hyperthyroid

Something's up

I don't need the results of my lab work (recheck) to know something's up.  Presenting at an all-employee meeting I got light headed right in the middle of it from my unexpected irregular heartbeat.  I felt it come on and the light headedness hit.  It was obvious.  Very obvious something was wrong.  I managed to finish--it was short to begin with.  So what I'd managed to hide from nearly everyone at work was there for all to see. 

Caught in the transition of going off the one drug that controlled my irregular heartbeat that had now slowed my heart down too much, I also recognize too keenly those familiar senses from my early days prior to diagnosis--they are back.  I can just feel it as sure as the season is changing.  Something's up and I'm prepared for it.  So I'll await the call from my doctor's office yet again, and when he tells me what I already know, I will tell him, as I have so many times before, "eye see."  (you have to read my about page to know what that means)

In transition, again--a new twist, or is it a turn?

You never know what to expect with Graves Disease.  Exactly two weeks ago (didn't blog about it then, catching up now) I was outfitted by my family physician with a 24 hour heart monitor.  Something showed up with my EKG when I saw her due to the dizzy spells I'd experienced (see my posts dated Aug 21, 23, 24).  She also sent me for an echocardiogram--to make sure everything is working the way it's supposed to, prompted by the dizzy spells I had after being on Propranolol for so long--it actually caused my heart to slow down too much--and the abnormal EKG.  The heart monitor tape has been sent out to a cardiologist to review.  Since I wore it two weeks ago I was hoping to hear something by now.  No such luck when I phoned my doctor.  The results haven't come back yet.  So wait yet again I will.  Somehow you spend a lot of time waiting with Graves Disease.  I'm quite used to it.  I'm hopeful it all had to do with the Propranolol, which I've been off of for a couple of weeks.  Light-headedness is completely gone. 

I'm also awaiting the results of the blood workup my endocrinologist ran Friday.  He wanted to double check the TSH level (see Aug 24 post) which was heading back in the hyperthyroid direction.  Not a good sign.  Since Graves Disease isn't really curable, it's simply manageable, I'm likely out of remission.  I expect a call or a letter with the results this week.  So wait yet again I will.  Oh yeah, I already said that.

The latest . . .

I saw my endocrinologist this morning.  To his question on how was I feeling, I told him about my dizziness I'd been experiencing for just over a week now.  His response:  identical to what my family physician thought Tuesday--it's likely the Propranalol (see previous posts).  His direction to me--take the last half-dose tonight and stop altogether.  So in about an hour that's exactly what I'm going to do.  In all that I've read it's not a medicine you abruptly stop taking as you can be at risk for a heart attack.  So I asked him if there was any risk for me.  In short, no.  I've been taking the lowest dose possible for about six months now, and for the past few days have split the medicine in two and taken half doses.  He said I should be fine.  He's a great doctor, and I trust him, but I'm still a little nervous.

So the good news is we've found the likely culprit causing my light-headedness.  Anxious to see as I remained tipsy through the day today.  Oh, and he was unconcerned about the very fine hand tremors at this time.

And more good news, he measured my eyes and they are exactly the same as the last measurement--they've stayed put.  And if you've checked out my before, during and after photos you'll see why I'm so excited about this.  Cick here:  before, during & after eye photos

Now for the disappointment.  My labs taken by my family doctor from Tuesday were faxed over to my endo and this morning he told me my TSH has dropped below normal.  TSH, otherwise known as thyroid stimulating hormone, tells your thyroid to produce thyroid hormone. So when your thyroid is producing too much, your TSH drops.  When your thyroid produces too little, your TSH goes up, telling your thyroid to produce more thyroid hormone.  So a low number TSH indicates hyper-thyroid, high TSH indicates hopo-thyroid.  My number dropped, and below the normal range.

So how bad was it?  When I was first diagnosed, my TSH level was .03 (when it's supposed to be between .3 and 3.0), in February it was in the normal range at 1.3132, and today it was .16, below the lower band range of .3.  While disappointing, I'm also optimistic.  He asked me to come back in two weeks for new blood workup, that we weren't doing anything today.  If I need to, he said I'd go back on Methimazole.  If that's the case, I'm going to ask for a different medicine.  I was in a fog the entire time I took it, it made my hair fall out, and I got a skin rash.  Thankfully there are other medicines.  Plus the lab work was done at a different lab than all my other lab work for the past two years.  He just wants to reccheck in two weeks.  I'm glad.  Whew.

Graves Disease Symptoms--heart palpitations, dizziness, rapid heartbeat, chest pain

Heart palpitations, dizziness, rapid heartbeat and chest pain are common occurences in Grave's Disease.  Read on for more on my story, in particular the time leading right up to my diagnosis.

As the summer of 2005 started to come to a close, I couldn't help but notice I was having a hard time catching my breath, even while doing something as basic as talking on the phone while sitting down.  I also began to notice my heart rate had increased.  For many years of my adult life I have been very athletic, and endurance sports were my specialty.  Distance cycling riding 1200-1400 miles each summer, running several times a week including 10k races, physically demanding sports.  All of which contributed to a resting heart rate when I woke up in the morning of between 44-48 beats per minute.  And in the 50's during the day.  So I knew something was wrong when my heart rate started to speed up (also known as tachycardia) and wouldn't slow down.  I had reason to believe there was even more to be concerned about because there was a problem where my heart beat would pound very hard for a few beats, then go back to a more normal or less severe beat, often in combination with a fluttering feeling like my heart beat was irregular or had stopped momentarily. 

The heart palpitations were without question the most frightening thing that was happening to me.  They were especially severe at night when I would lie down in bed and try to fall asleep.  But sleep was impossible.  The chest pain got so severe I would sit up as if jolted out of my bed.  I was so scared I would sit up and just cry.  Frightened can't even begin to describe how I felt.  I chalked it up to many things:  caffeine, stress on the job (an industry cutting back, a lot of job uncertainly), a ton of job travel, poor work-life balance, etc.  I told no one--except my parents.  It was all so hard to explain anyway and at this point I still didn't know what was really wrong with me. 

The moment of truth came in November of 2005 when I was presenting to a group of senior leaders in my company, many of them VP's, when I completely lost my breath, felt my heart racing, all the while skipping beats.  I put my hand up to my chest and realized if I didn't walk out of the conference room I was certain I was going to fall down from being dizzy.  Out I went.  I was mortified.  I ran to the drinking fountain, put my hands on the wall to steady myself and catch my breath as best I could.  I walked back in a few minutes later and I will forever be thankful that no one in the room made anything of it. 

The meeting was over and I got on the elevator with my colleagues.  They asked me if I was ok.  Obviously not but what do you say?  One of them said what would become the first of many insensitive comments made over the next year and a half:  "well, it happens to everyone."  If they only knew!  I had a difficult time trying to explain to people what was happening to me as I struggled to come to grips with it myself.  This is a lesson I'd learn over and over.  Unless you're going through it you really cannot comprehend what it's like. 

I had put everything and everyone ahead of myself, especially work.  Why I'm not exactly sure. Getting ready to go on vacation I decided it was about time I paid a visit to my family doctor.  That's when she ordered the blood workup.  Leaving her office that day, I left with great hope--please let her figure out what's wrong with me.  The symptoms are so bad by now I can hardly stand it. 

It wouldn't be long and I'd have my answer, and unfortunately, new symptoms and side effects would follow.