About 2 years ago, I went to the doctor. I had been having one pesky little issue (that I had been having on and off for a few years by then), and while the doctor told me (again) I was fine, I asked him to make sure... medically. I wanted to make sure he wasn't just treating a symptom of something else. So, he agreed. And said (and I quote): "Just remember you asked for this."
Now I know what he meant.
He ordered a CT scan. This test, of course, found all kinds of things unrelated to my one symptom. There were spots on my kidneys and liver and hip. That meant more tests: an ultrasound for the kidney, an MRI for the liver, a PET scan for the hip. Honestly, I had so much radiation running through me, I glowed in the dark.
The children were highly entertained.
The tests were whatever they were. I saw a urologist for the kidneys (more tests; everything was fine). The MRI found the liver to be fine, too. But then came the PET scan. The thing on the hip was nothing, but they found a spot on my neck. My doctor who ordered these tests is a specialist. Because this was out of his realm, he suggested I see my PCP to then find another specialist.
More appointments, more doctors.
My PCP sent me to an ENT. This guy took a biopsy of my neck (thyroid, really); results were inconclusive. But then he said that thyroid cancer grows slowly and even if it was cancer, it probably could wait another 6 months before we tested it again.
Aaaand here begins my rant.
First off, don't tell someone that you might have cancer, but oh, don't worry, it can sit in your body for a while longer. I decided this man was not going to be my doctor.
I saw an endocrinologist. She told me she could see the lump right away, just by looking at me. We did another biopsy; it, again, was inconclusive. She suggested I see a surgeon anyway because it was a big nodule that shouldn't be there.
So, I saw a surgeon. He seemed nice enough, agreed I needed the surgery to remove the left lobe of my thyroid. He happened to be the inventor/director of this robotic technology that would make the incision under my arm instead of across my neck. And I was vain enough to agree to that surgery.
That'll teach me.
Surgery was a year ago December (there was a little bit of cancer). Since then, I have had nothing but problems. Arm numbness, neck pain (remember when I threw out my back/neck moving my sister?) and a host of other things. I had a few follow-ups with the surgeon; he, of course, said my symptoms had nothing to do with my surgery. I was all, I'm not going to sue you, dude. I just want to know if this is normal. And forever.
Bloodwork showed I needed thyroid meds, so I went on them. I never got an answer from the surgeon about my arm, so he sent me to a neurologist. I didn't have nerve damage, which was good, but also didn't solve that problem. He suggested physical therapy.
In the meantime, I was having horrible womanly issues. I called my OB/GYN first. She said it wasn't her problem, it sounded like my thyroid. I called the endocrinologist; the nurse told me she had never heard of the thyroid affecting that part of a woman. (FYI, a quick Google search found the correlation in 2 seconds, but whatever). After a lot of back and forth, and a lot of them telling me it was not their problem, I made my endocrinologist up my thyroid med dosage.
After a few months, I started having bad side effects: dizziness, lightheadedness, heart palpitations. I went back to my PCP for a physical. I just wanted to know if this was all normal... rather, if this was my new normal.
My physical was fine. And yet, I still wasn't. I went back to the PCP, who ordered me to wear a 24-hour halter monitor. The monitor found something, so a cardiologist called me to see him. I, of course, had to wait 2 months to get in. Do you know what waiting does to someone who might have a heart problem who also definitely has anxiety?
While waiting, my symptoms were bad enough that I had to do something. I saw the endocrinologist again last week. I just couldn't believe this wasn't all related to my thyroid. Heart palpitations are one of the top symptoms of hyperthyroidism, how could it not by the thyroid? She told me that my levels were normal, so it wasn't my thyroid. And that I must have a heart problem. Basically, she said: it's not my problem, see someone else.
(Sidenote:. In all my life, I (thank God) have been relatively healthy, up until now. Cholesterol has been good, I have low blood pressure, low heart rate. Nothing to suggest a heart problem in all this time. Isn't it a funny coincidence that my "heart problem" started the moment my thyroid stopped working?)
Anyway, against her advice, I stopped taking my thyroid meds. And, (not) surprisingly, the heart palpitations stopped. Lightheadedness was still there, but it was not as bad. Funny how that happened.
So, yesterday, I finally saw the cardiologist. And, guess what? My heart is fine. And guess what else? It's not his problem, see someone else.
And here I am. I still don't know what's wrong with me. I feel better being off the meds, but I still have the lightheadedness, which only amps up my anxiety. And I need the meds to keep my thyroid working, so we still have to solve that problem. But who is going to solve it when no one takes responsibility?
Here lies my problem. Where is my patient advocate? Who is finally going to accept responsibility for my care and get me the help I need? Why aren't any one of my eight (8!) doctors helping?
When I was bleeding so much I thought I might bleed to death, why wasn't anyone helping? Why couldn't I call an advocate-type person, one who knows medical jargon, but isn't affiliated with a doctor's office, get me to the right people? It happens in cancer care, why not elsewhere? And my problem is small, relatively speaking. What happens to people with chronic diseases?
I feel like your PCP is supposed to be that person, to an extent. And I love mine, I really do. But, is he not doing his job? Why didn't he follow up with me after he ordered the halter? Why isn't he following up with me about any of the problems I've seen him about just this year? I get that he has hundreds or thousands of patients and can't possibly have time to do this for each and every patient, but how else is this supposed to work?
I know, I'm supposed to be my own advocate. But, how are you supposed to advocate for yourself when you don't even know what you need?
Funnily enough, I write marketing materials for the healthcare industry. I know enough about all kinds of conditions to be dangerous – or *this close* to becoming a doctor myself. I'm constantly talking about a "multidisciplinary approach to medicine" and "patient-centered care". And I'm calling bullshit on my bullshit. There is no multidisciplinary approach. There is no time. Doctors don't even look at their patient files before they see a patient. How do these people, who have the tremendous responsibility of a person's life, get away with this? My company expects the respect of people's time; I could never go into a meeting not even the slightest bit prepared. Isn't this the same thing, more important even?
All of this is to say: healthcare industry, get your shit together.
