Illness Part 9: Breaking Up

 "Can I break up with my endocrinologist?" I asked my primary care doctor, a General Practitioner.

He smiled, and said, "Well, you're the patient. You can do whatever you want."

That's patently false. I spend much of my time getting medical tests and otherwise jumping through hoops, so that my insurance will pay for things. I am not in charge. (But I should be, along with my GP.) In actual fact, my insurance company is in charge.

But, still, I was glad. When I started seeing the endocrinologist, my GP had said, "If anybody can figure out what's going on with you, she can." I looked forward to that. My body chemistry has been just not quite right all of my life. I have developed an aversion to hearing the word "should," as in, "...you should be feeling..." and, "...this should be working...", because often, that is not how I feel, and that is not how my body works.

After my thyroid was removed, my sister wanted to know what had caused it to be enlarged and covered in nodules. I told her, "Nobody seems to know, and they're not particularly interested in finding out." But I wanted to know. Something caused it. Should it be treated? Will it affect other things? So, my family and I were very excited to send me to a specialist, one who would figure it all out.

At my first visit, I went over things going back to my childhood. She seemed interested; she listened, and occasionally asked questions. But it soon became apparent that she was not looking for what caused the gland to need removed. Her entire process revolved around the fact that it was now gone.

Well, OK. It's probably hard to diagnose after the fact. I get that.

Still, any symptoms I had also were disregarded as irrelevant. Every appointment, I'd be handed a sheet asking me about symptoms, and I'd check box after box. Near as I can tell, no one even glanced at those forms. All that was ever discussed were my blood tests. When I'd bring up symptoms, I'd be told, "Don't worry. You're still adjusting. It will all even out eventually."

Ten years later I can say with conviction: it never evened out. Ever. (Illness Part 4: Symptoms) Through different medications, different doses, different protocols, I still have almost every symptom. I had them before the thyroid was removed, too. Obviously, there's something we're not looking at. I have become convinced that we don't yet know even what questions to ask, much less how to check my body. I just hear over and over about what "should" be.

Soon, I rarely saw the actual doctor, and just saw her physician's assistant. Not a deal breaker. I also rarely recieved eye contact from whoever treated me; they spent the entire visit, minus checking my vitals, looking at a screen and typing on a laptop. Years ago, this became standard. I don't know if the directions came from the AMA or the malpractice insurance or the medical board, but every single provider now spends their visit looking not at the patient, but at a laptop. They spend more time filling out forms to "prove" that they're treating a patient than they do actually treating patients. That annoys me tremendously. But, as I said, it's standard; I can't really get away from it.

I have listed the issues that I had even getting an appointment (Illness Part 5: Caring For My Health). It was just so exhausting, and gave me a bit of insight into the fact that the office ran exclusively on PROCEDURE. Again, not terribly unusual and not a surprise, but so aggravating. Every office seems to expect everyone in the outside world to know about and comply with internal procedures as a matter of course. This is a problem, because the layperson doesn't work in your office, so of course they are not going to know How You Do Things.

Now, actually being seen at the office, I had to deal with the office staff too often for anyone's comfort.

For instance, I had to be seen every month. To me, that means "roughly every 4 weeks" or "in 28 to 32 days." Not to the office staff; to them, it meant in 30 days, exactly. If day 30 landed on a weekend, the woman making the appointments would fuss and huff and talk about "getting back on schedule next month."

I once pointed out to her that my monthly blood tests were not 30 days apart. I was sent home with a paper, and I took it to the lab and got tested whenever it was actually convenient. Usually, I did it on day 25 or so, but it might be on day 15 or day 29. She looked at me blankly, like she did not understand the language I was speaking, and then gave me a long explanation of how I had to come in every 30 days EXACTLY "so the records will be accurate." The fact that when my blood was drawn seemed far more critical than when I walked in the door to discuss it with the doctor seemed to just pass her by. Finally I just ignored it and resigned myself.

Then one month, as I was leaving, I was asked to come back in exactly 30 days, and I balked.

"That's the first anniversary of my mother's death. I don't want to even leave the house that day."

"Oh, you'll be fine. Just take yourself out to lunch, or maybe go shopping."

I stood there in disbelief and stared at her. What I wanted to say is, "Oh, of course, a nice restaurant meal will totally distract me from the fact that my mother is dead." But I didn't say that. (In retrospect, I should have.) Instead, I said, "I would really like an appointment on another day. Can I come a day later?"

"No, no, no, it's thirty days. You'll be fine. How's 11:00?"

I wanted to scream, "It is not FINE. She is GONE. Don't you have a mother?" Instead, I got an appointment for 11.

It wasn't too many months later when I ran into an issue that she couldn't bully me through. The only appointment available in 30 days was at 8:00 am. The office is 30 minutes away from my home, and I had to pick up a child, a child who did not yet drive, from a class at 7:30 am. The class was 10 to 15 minutes farther away from my house, so if my child walked out on the very stroke of dismissal, and I had great traffic and luck with lights all the way home, I could potentially leave home at 7:45. The math simply did not work, especially during rush hour traffic.

I explained all of that, and asked for another day. No, of course, I HAD to be seen on that day, and that was THE ONLY appointment available.

"I WILL be late. I can't avoid it," I told her.

"Just get here as soon as you can," she said.

Fast forward exactly 30 days. I browbeat my child, with instructions to come to the car immediately at dismissal, to not stop and say hello or goodbye to anyone, just run out to the car. Eyeroll; "I will, Mom." And he did. I drove like a crazy person home to drop him off, then sped across town. I was, as promised, and guaranteed by the laws of physics, late.

"You're late," the receptionist huffed.

"I know. I told you that I would be. (This was literally the same woman who made appointments.) I had to pick up my son across the valley at 7:30."

"Well, I don't know if we can even see you now."

"When I asked for a different day, because I'd be late, you told me that you couldn't do that."

"The patient after you has already been called in!"

"OK, you gave her my time slot, so give me hers." 

"Her appointment was scheduled after yours!"

"So you said. You have two patients, and two time slots. You gave mine to her, so give hers to me."

"We can't see you if the patient after you has already been called in!"

At this point, I threw out any pretense of being polite. I raised my voice; I'm an actor. I can project. "I told you that today was not convenient for me. I told you that I would be late. I asked for a different day or time. I don't know why I'm here, anyway! I can tell you exactly how this appointment will go. I will walk in and say, 'I feel great.' She'll say, 'But your numbers are terrible,' and I'll walk out of here with a new prescription. I COULD DO THIS OVER THE PHONE."

She stared at me, then out at the semi-full waiting room, and said, "I'll see if we can get you in."

And just like magic, they could. It took all of 15 minutes for the entire thing, from being called in, to being seen, to being dismissed. I walked out of the office with the predicted new prescription.

That was the day I decided that I didn't want to go back.

"I don't ever want to speak to anyone but you about my medication," I told my GP. "If I'm sick, I can see whoever's available. But I don't want to discuss this with anybody else. Ever."

Well, I didn't quite get my wish. I've seen the Physician's Assistant repeatedly. Now, my doctor is going on a church mission out of state. Some day, he will retire. Maybe, by then, I'll be OK with that.

But I have never regretted breaking up with my endocrinologist.

Illness, Part 8: Meds

I made a prediction to my family: "Watch. I'll go in (to the doctor) and say, 'I feel great,' and they'll say, 'Your blood levels look terrible!'" Sometimes, I like to make predictions that I'm positive are a sure thing, so that my loved ones will be impressed by my prognosticating prowess.

Almost a year ago, my thyroid was removed. It was enlarged and covered in cysts, and my life has been better without it. My biggest problem since then has been the attempts to regulate my medication. Without a thyroid, I'll be on medication for the rest of my life to do the job the gland used to do.

The problem is that mine did its job badly - hence its removal. OK, that's not the whole problem. My body chemistry has never been quite right. I've never had regular periods. I've had diagnosed hormonal issues since I was in my mid-20s, over 20 years ago. I was having trouble getting pregnant, and the OB-GYN ran an MRI and found pinpoint tumors in my pituitary gland. That's worse than it sounds, despite the fact that it means brain tumors. One, they were tiny, very tiny. Two, my last MRI, taken a few months ago, came back clear. We have no idea if that means that they shrunk, that they were never there or that the new scans weren't read properly. The doctor who originally diagnosed the tumors has long since retired, and the original scans have been lost, so they are not available for comparison. Sigh. (At least my blood work shows that my body no longer secretes breastfeeding hormones, years after I stopped breastfeeding. That was one of the originally documented "Huh?" moments.)

Over those 20+ years, I've also had blood tests designed to tell me about my thyroid function over and over, because I've always had symptoms of thyroid issues. Every time, the doctors looked at the results and said, "Your thyroid is fine" - until it had to be removed. (Yeah, dozens of symptoms, persistent over decades, or a blood test - which one are you gonna believe?)

Since then, my endocrinologist and I have discovered that I am something of a paradox. I feel better with a chemical composition that usually makes people feel worse. "I've read about people like you," the endocrinologist said to me, "but I've never actually met one before." So far, we haven't tried to figure out why this is; her office is still trying to wrap its collective head around the fact that it is.

Normally, the higher the concentration of thyroid produced hormones in the blood, the better a person feels. They have more energy, more mental clarity, they lose weight. When the concentration is too low, they are exhausted, mentally foggy, sluggish and gain weight. Doctors have been trying to increase my dosage since weeks after the surgery. Every time, I feel awful. I sleep for 14, 16, even 18 hours a day, but it takes hours to fall asleep. I'm grouchy, have no energy or focus, and get sick easily. Drop the dose, and I sleep normally - I fall asleep quickly, and I wake up 8 to 9 hours later (without an alarm). I have energy. I don't need naps. I rarely get sick. I feel better than I did before the surgery. I like feeling this way.

The problem is that how I feel does not match how the medical literature says I "should" feel.

The medication prescribed for me after the surgery was apparently one of the most common. We had never managed to get me back to the way I felt in the weeks immediately following the surgery, when I felt great but was "supposed" to feel my worst. It was workable but annoying - especially since any time I said, "I'm tired" or "I'm always exhausted" the response was, "We'll raise your levels." NO! That's what caused this feeling!

Then, the manufacturer discontinued that medication. This, it turns out, was actually a good thing. I had to scramble to get in to see the endocrinologist, because I found out that the medication was unavailable when I had a single day's worth left. Silly me. Anyway, I had to see the doctor, because, heaven knows, they can't prescribe medication for a known, documented, unchanged condition without having you sit right in front of them. (I was originally told that I'd also need a blood test first, but they dropped that condition when it turned out that the lab could not get results in time.)

"Well, if you felt good on (the last medicine), I'd just prescribe one that's almost identical. Since you're not happy, though, let's try something new," she said. She prescribed a different medication "that functions totally differently inside your body. For some people, they feel better almost immediately." It's made from the dehydrated thyroid glands of pigs, and was the go-to medication for decades before humanity decided that Better Living Through Chemistry was the Answer to Everything, and naturally derived medicines were for the uneducated and superstitious. Many people who don't respond well to synthetic thyroid hormones do well on this medication. (I frequently refer to them as "my pig pills.")

She told me that I might feel better "almost immediately," so I woke up the next day pretty much thinking, "Show me what you've got." I didn't feel better - or worse - immediately, but after a week or two I did. I like these pills much better. I feel much better. My sleep habits resemble a normal human's - something that has not been the case for most of my life.

I'm supposed to take one pill first thing in the morning, and I never forget. I'm supposed to take one midway through my waking day, "to give you an extra shot of energy to make it through the day," and I frequently forget that dose. For one thing, it does not give me "a shot of energy." I don't really notice the difference at all. I usually forget until close to bedtime, and I'm not supposed to take it too late in the day, lest it cause insomnia. So, if I forget, I just take the next morning's dose. After all, I feel great. If it ain't broke, don't fix it.

When I went in for my first checkup after starting the new regimen, I'd been on these pills for about 8 weeks. I saw the physician's assistant (PA) instead of my doctor, which is fine. She's very sweet and competent, despite the fact that she spends most of our time together typing into her computer. I don't blame this on her, but on the current medical culture's need to obsessively document EVERYTHING. This time, she asked how I was doing, how I liked the new meds, and was all smiles with my answers - which boiled down to, "I feel great" - until she called up my labs, done three days previously.

She actually gasped. "I would expect you to be barely functional, like a zombie, with numbers like this! It looks like you're not even in treatment!" The more she stared at the screen, the more agitated she became. "I can't let you walk around with numbers like this!" Then, "Maybe it's lab error. We have to seriously consider lab error with numbers like this." Then, the dreaded sentence: "I'm going to have to increase your dose." UGH!

"I frequently forget to take my second pill. Can we hold off at least until I manage to get the hang of taking both doses?"

"How frequently?"

"More than half the time." This, frankly, was giving me more credit than I deserved - for the first two weeks, I hardly missed any second doses, but for the last month, I think I've remembered a whopping three times.

"The doctor's going to wonder why I let you walk out of here with numbers like this." Then, grasping at straws, "It takes a while for the medication to build up in your blood stream. Maybe it's just not showing up on the tests yet." Yeah, sure, whatever lets me flee the office without a new prescription.

"I get really tired of hearing that my numbers look great when I'm miserable," I told her. This is not new ground we're covering here.

"Of course, of course. You want to be treated like an individual."

See, that's the entire problem. Modern society makes no distinction between individuals. Last time I said almost the exact same thing, "I hate hearing that we have to keep my numbers at a level that makes me miserable," to my endocrinologist, the smile froze on her face and she said, tightly, "I can be held liable if it's determined that I've failed to provide you with a proper standard of care." I have intellectually understood that insurance companies and fear of lawsuits weigh more heavily than health issues and patients themselves in the health care system, but now I find myself smack in the middle of the morass and angry about it.

See, let's first talk about the terms "normal" and "average." "Normal" means "the majority of people fall into this category." ("Most" or "majority," of course, is anything over half.) "Average" is a mathematical term. It means either that you have taken all the available information, added it together and then divided it by the number of individuals it represents, or that it is the exact middle, with half above and half below. Scientists, mathematicians and average people will tell you that nothing is ever 100%. Just because a piece of information represents "most" people, it will never represent all people. Yet, insurance companies and other entities insist that everyone must fall into that middle area. They see no legitimate reason that anyone should ever be above or below that mark. It seems so clearly obvious that some people will fall above that mark, and some will fall below, but they don't see it that way. Everyone must be kept in that middle range, because, by golly, other people need to be there.

This is why, even though I had persistent symptoms of thyroid issues, I was told for decades that I "must" be fine, because the blood tests showed that my hormone levels were in that "normal" or "average" zone. It is also why, even after it was determined that my thyroid was diseased, the health care community feels compelled to return my body to the same body chemistry that existed when I was suffering from disease. It's "normal."

I am thankful that my endocrinologist is at least willing to listen to me. She hears and understands what I have to say. I'm lucky, though, that I fall below "normal." She's willing to let my numbers run low because, "It's far more dangerous to run too high than too low." What if my body's ideal was higher than "normal?"

Still, I feel that I have to fight. My doctor has to straddle the line between keeping me happy and explaining her actions to the insurance company; the company can refuse to pay for any treatment that is not considered "normal." Plus, she has to worry that, one day, I or a family member might sue her because I was not kept in that "normal" range.

I mean, if normal levels were not good for me, it seems obvious that something other than normal would be ideal. And why should anyone but me or my doctor make these choices? Why is it any business of my insurance company? I fear having to fight these battles again in the future, because I'll be on medication for the rest of my life, and my doctor will eventually retire.

So, I left with instructions to "Set an alarm! Don't forget that second dose!" Two out of three days I've remembered. That's progress.