The Symptoms, The Appointments, The Scans
Living with a thyroid disorder is no picnic. It is a constant battle that I never signed up for. It masks itself as anxiety disorder, panic disorder or depression, sometimes all three along with many physical ailments.
I believe that my fight with Graves’ Disease started in my late teens when I started having panic attacks over little things and anxious about things that I shouldn’t be anxious about. When I was in my early 20s I recall my mother taking me to the doctor to get bloodwork done to only find out that “there was nothing wrong with me” and that I “just had anxiety”.
When I was 25 I was diagnosed with hypertension. At the time I was a smoker and really didn’t care what I ate which probably contributed to my high blood pressure along with the condition running on both sides of my family. The doctor told me to go on a diet, quit smoking and start taking a diuretic pill every day. I have to say, as soon as I started to take those pills and I quit drinking soda I automatically lost 8 lbs! I couldn’t believe how much weight soda puts on you!
When I was 30 I started having problems that I could not explain. I was restless, achy, anxious, had heart palpitations, sharp pains in my stomach, headaches, red rashes on my legs, bulgy eyes, couldn’t close my eyes all the way when sleeping, sinus problems, sweating, shaking, blurry vision, problems swallowing, nightmares…shall I go on? At the time I was working at a job where I put in about 50 hours a week and it was very stressful. I figured it was just the craziness of the job and that the stress was causing all my problems (and it very well could have been).
This all led to one morning when I was having a hard time breathing.
I was only married a year and a half when I started feeling really bad and we had just moved from New Jersey to Florida. I had lived in Florida before, in fact, I went to high school and graduated from the University of Central Florida (GO KNIGHTS!) then moved back to New Jersey for about 6 years and met my husband and the rest is history. Two of our main reasons for moving to Florida were to be closer to my parents and to own a home. New Jersey had gotten so expensive to live in and although I LOVE my home state, we decided to make a huge change and begin our lives together in Florida.
We were newlyweds and just learning about each other and when you say your vows to be with each other in sickness and in health, I have to say, I don’t believe that my husband was thinking that he would have to deal with the sickness part so early in our marriage. He definitely held up his end of the bargain during that time! Not to mention that I’m sure in his head he thought “What have I gotten myself into with this one” more times than he would admit to me.
Okay, now back to our regularly scheduled shitshow….
The Symptoms & Appointments
I had gotten sick with what felt like a really bad sinus infection (I get them a lot). I went to the doctor and told him that my sinuses hurt really bad and that I felt like I had a fever. He took my temperature and it was normal. He prescribed some antibiotics for me and told me to get back with him in a week or so with how I was feeling.
Well, I didn’t even make it a week!
I called him the next day and said I needed to see him again because I was dizzy, sweating, flushed, shaky and sick to my stomach. He sent me for some more bloodwork which came back with elevated cholesterol and tryglicerides but normal thyroid levels (research has determined that high cholesterol and/or tryglicerides are a symptom of thyroid disorder). Meanwhile, I left that office still feeling really sick. I was at a loss and going to the pharmacy again with another prescription to fill!
At this point, I am on 4 medications and none were working! Every night I had problems sleeping. I had pains in my stomach. I had nightmares. I woke up in sweats. I was dizzy all the time. I slept with multiple pillows or sat up in bed because my throat would feel like it was collapsing if I laid down straight on the bed. I was miserable. I took a few days off from work to see if it was the stress but none of the symptoms went away, in fact, I was getting worse.
I woke my husband up around 4am one morning because I was having a hard time catching my breath. It felt like a panic attack but much worse. He drove me to the emergency room and then things got kind of blurry. I remember checking in with the desk and sitting in the waiting room for about what felt like an eternity and in a complete daze.
Finally they took me back, automatically gave me IV fluids, took my blood and put me on an EKG machine which turned out that I, in fact, was NOT having a heart attack. As I sat there on the bed, I thought to myself, what in the hell is going on! Why do I feel this way? Is this all in my head? I had no clue at that moment what they were going to tell me about the test results which made me even more anxious than I already was.
It’s so hard to explain how I was feeling to him and to others without people thinking I was making it up. He wound up telling me that I had vertigo and gastritis and gave me pills for both ailments and sent me home.
I left that hospital KNOWING that this wasn’t the end. I knew there was something else wrong with me.
I followed up with my primary doctor as the ER doctor had recommended. When I went for my appointment, I explained to the doctor that the pills weren’t really working and that I still felt really bad. I told him all of my symptoms and he took my temperature (which was normal) then hit me with one of those things that they bang your knee with to check your reflexes to try and relieve my sinuses (weird, but my sinuses felt better after that, maybe I should start punching myself in the face when my sinuses act up!). He sent me away with some lab work and a “get out of my office” kind of look.
I was barely sleeping. My eyes hurt so bad and were beginning to bulge to the point where I was really starting to notice it when I looked at myself in the mirror and they also wouldn’t close all the way.
And then there was a phone call…
While I was at work one day I received a call from my primary doctor who had informed me that my thyroid numbers were extremely abnormal and he wanted me to go to an endocrinologist for additional tests. The news brought me so much relief! I mean, no one wants to hear that they are sick but when you were at the point that I was, I welcomed the “you’re sick” answer with open arms (queue Journey).
When I got off the phone with my primary doctor I made a decision to get a second opinion before going to the endocrinologist. I scheduled an appointment with the new doctor and was told the same thing as my original doctor (always get a second opinion. ALWAYS!). She asked me if I had symptoms like, heart palpitations, stomach problems, sleeplessness, moodiness, depression and dizziness. Finally! Someone who gets it!
I told her that I indeed had all of those symptoms and then she proceeded to talk to me about taking some medication to help me sleep. At this point, I was not too fond of taking anymore meds…but I could use a good night sleep! She said that she was going to give me a prescription for Valium and that it was going to help me relax and sleep until I could get my thyroid treated. Hmmm..I had heard of Valium and also heard that it was very addictive so I expressed my concern about taking these meds as I was not feeling comfortable with this conversation AT ALL! She then said:
“You DO want to sleep, don’t you?”
Well, doc, since you put it THAT way, give me the damn script!
So, I left the office with my blood work and prescription in hand to, yet again, ANOTHER trip to the pharmacy to fill ANOTHER prescription. I swear the people that work there probably said to each other……
“Oh look who’s back. It’s the crazy lady. Wonder what’s wrong with her now? Oh and look, she’s getting crazy medicine!”
I went home that night and took a half of Valium as directed and it was like heaven on Earth! Every muscle in my body was relaxed. The thoughts that raced around in my head had stopped and as I enjoyed this feeling, I smiled and thanked God! THANK YOU GOD FOR VALIUM! It seems silly to thank God for a drug, but let me tell you, it was the best gift my doctor and God could have given me! I slept through the night and when I went to work the next day I was actually able to function the way I used to. It was wonderful!
As directed by my doctor, I found an endocrinologist who was close to my job because I was sure that he or she would be my best friend for a while until we got my thyroid under control. I made an appointment and I went. The first thing he did was study my blood work from my primary doctor, asked me a few questions and checked my neck with his hands and said, “You have a lump here” as he applied pressure to the left side of my neck (hmmmm, no wonder why I was having trouble swallowing and food would get stuck in my throat sometimes). He suggested something called an uptake and scan to see why this lump was invading my thyroid and he also wanted to do a full thyroid blood work up.
As I waited for a few days to get the results back from my bloodwork (which wound up showing extreme hyperthyroidism), I made an appointment to get the uptake and scan done which had to be done in three weeks because the anti-thyroid medication had to be out of my system before the scan. Then the REAL fun started!
The FIRST appointment for the uptake and scan consisted of taking a pill of dye and being sent home for 24 hours to only come back the next day for the scan. Guess the pill needs time to poison ya! I returned the next day for the scan and when you go into the imaging room, they lay you down on a table with your head tipped back so they can get pictures of your thyroid at all angles. Since I am VERY claustrophobic, this procedure was hard for me to deal with especially when they ask you to stop taking your antithyroid medication for 3 weeks and it throws you into hyper mode. You also have to stay very still while they are performing this scan so they can get accurate pictures which was also difficult since I was having tremors.
The machine comes down from the ceiling and then stops about 6 inches from your face (at least that’s how it felt to me), then they tell you that each scan will be 5 minutes each (which feels like 5 hours).
As I was laying there I tried to take deep breaths and kept my eyes closed most of the time to try and forget that there was a radioactive machine in front of my face! Every time I would open my eyes it would throw me into panic mode for a few seconds until I closed my eyes again.
When the scan from hell is over, they ask you to sit in ANOTHER area and they take ANOTHER scan of your thyroid with a different machine and an image of your thigh for about 4 minutes. I’ve heard that the reason why they scan your thigh is because it’s the closest size to your neck…ummm…not THIS thigh! And I also heard that it’s to check for muscle weakness. Either way, they scan your thigh also and at this point, I thought in my head, what the hell does it even matter anymore how many scans I needed, just find out what the hell is wrong with me!
I left that day with so much nuclear medicine in my body, I was probably glowing down the halls.