I’ve been meaning to write about this for weeks now. But I didn’t know where to start…
Back in the fall, I noticed my heartrate at rest was up, way up. It was 140 beats per minute at rest, which is what it should be if a person is running full out. I’ve had a heart rythym issue for about 15 years, so I went to my cardiologist. He said he thought my system had become used to my heart med. So he put me on a different heart med than I had been on.
But there was no change. So he put me on a different heart med. There was a little improvement, but not much. So he increased the dosage. Again, not much change.
Meanwhile I began to lose weight and I developed tremor..I was literally shaking. I was also having problems getting to sleep at night and was hot all the time. Harland and I engaged in a thermostat tug of war. I had difficulty concentrating, and was irritable. I mentioned these symptoms to the cardiologist’s nurse but the dr just kept targeting the heart rate issue.
I consulted Dr. Google and found I had all these symptoms of hyperthyroidism:
- Sudden weight loss, even when your appetite and the amount and type of food you eat remain the same or even increase
- Rapid heartbeat (tachycardia) — commonly more than 100 beats a minute — irregular heartbeat (arrhythmia) or pounding of your heart (palpitations)
- Increased appetite
- Nervousness, anxiety and irritability
- Tremor — usually a fine trembling in your hands and fingers
- Increased sensitivity to heat
- Changes in bowel patterns, especially more frequent bowel movements
- Fatigue, muscle weakness
- Difficulty sleeping
- Skin thinning
- Fine, brittle hair
Finally last month I’d had enough of my cardiologist treating me like a guinea pig with all the heart meds, and went to my primary care physician. I sat in his office, heart pounding away, hands shaking..a wreck. Fortunately, he didn’t skip a beat and suspected my thyroid right away. A blood test confirmed it the next day: Severe Hyperthyroidism. My PCP put me on a combo of heart meds to bring my heart rate down and lessen the other symptoms as well.
A week later I saw an endocrinologist. Several days later, I had an ultrasound on my thyroid to check for cancer. It was a little enlarged, but no growths. Then, a week later, I was scheduled for a radioactive iodine uptake test to see what the severity of my hyperthyroidism is. This test set for another week away.
A couple days before the test I called the endocrinologist’s nurse about my heart rate..it was back up again. I called again the next day. No return call.
That same day, last Thursday, I went to the hospital in Topeka to have the radioactive iodine test. That morning they gave me a capsule containing radioactive iodine in it. They did a baseline scan, then they asked me to come back in 6 hours. The thyroid absorbs iodine. How fast it absorbs the iodine indicates the severity of the thyroid issue. Six hours later, they did the scan again. My absorbtion rate was pretty high.
The next morning, Friday, they scanned me again – the result was the same. Then they injected me with more radioactive iodine, had me lay on a cat scan table, and took “pictures” of my thyroid. Mine showed up in the images like a 1000 watt bulb in a dark room. They said I was “severe” and that my thyroid issue was caused by Graves Disease, an autoimmune illness. I wanted to just go home and cry, but I headed to work anyway.
There are 2 treatment options for hyperthyroidism:
1. Meds that a person can take for only 2 years and may cause liver damage
2. I big whopping dose of radioactive iodine that kills part or all of the thyroid. Usually leads to the opposite problem – hypothyroidism – which requires drug treatment for the rest of a person’s life.
I didn’t hear back from my endocrinologist that day as to what treatment would be done or what to do about my rising heart rate. On Monday, I called again and finally got the nurse on the line. She said I could increase my heart med for my rising heart rate and then asked what kind of treatment I wanted to do for my thyroidism. What the – ???? Did I go to medical school? What do I know??
Between the symptoms and the delays in diagnosis and treatment, by now I felt whipped with no strength to argue. So I went ahead and chose the radioactive iodine treatment. The nurse said they would call me to schedule an appointment for the treatment. This was on Monday of last week. Tuesday went by without a call.
Then Wednesday. Thursday. Friday.
One night when I was having a partcularly hard time getting to sleep. I lay there thinking – and got really mad. It was about 2 am. What kind of doctor tells you that you have severe thyroidism and then ignores you for days and weeks at a time??? It’s been over a month now since I was diagnosed. When treatment is started, whatever treatment it is, it will take 6-8 weeks to see results because it will take that long for all the excess thyroid hormone to get out of my system. And while I’m waiting, there’s a chance of me having nifty little episode called a “Thyroid Storm”, where a person goes into cardiac arrest and dies. Yay.
I lay there in bed thinking, “I’ll show that doctor. I’ll die on him. Then I’ll have Harland sue his a** for malpractice. Ha ha, I’ll fix his red wagon.” A great plan except for the fact that I’m not ready to die yet.
Monday of this week I called my PCP and asked them to refer me to a new endocrinologist. I’m going to KU Med, the best hospital in this area. I want someone to take my problems seriously and promptly. And I want someone to recommend treatment and start it asap. The frustration and waiting, calls that go un-returned, the feeling that no one in the medical profession cares that I feel like crap and have felt like crap for months now…. All this has, at time, been more aggravating that the illness itself. I’m so tired of waiting to feel better.
Oh..and I had to cancel my surgery that was to improve our chances of starting a family. The surgery was to have taken place in Omaha today. I won’t be able to reschedule until my thyroid is under control.
And guess what? I’m still waiting. My records were transferred to KU Med on Monday, and I”m waiting to hear from them…. I’m so irritable and I don’t know how much of it is the thyroid issue and how must of it is aggravation with all the delays. I feel like I’ve been drinking pots of coffee all day and even have had a few panic attacks. . I’d like to have an adult sized temper tantrum…I could scream and cry with the best 3 year old.
Sigh…. So here I am…waiting….
Thanks for listening to my rambling. If you could say a prayer for me, that would be a wonderful thing.