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.

Illness, Part 5: Caring for My Health

I hope that I never need any kind of surgery again, because I've undoubtedly alienated a significant proportion of the office staff at my surgeon's office. I finally badgered and browbeat and just generally annoyed the woman I usually got on the phone to simply freaking pass on my request to the doctor himself. I mean really, is that unreasonable? Yes, it was complicated by the fact that he was out of the office - out of the country - but for heaven's sake, either feel empowered to make a decision or pass me on to somebody who can. It's not tough. It should also not come as a surprise to anyone that, hey, patients will occasionally need care when the doc's out of the office. Have a plan in place that does not simply consist of, "We'll ask when he gets back."

I mean, here it had been impressed upon me that one of the most serious complications of an out of whack thyroid was irregular heartbeat, it had been made clear to me that irregular heartbeat was to be avoided, and now hearing, "This medication is giving me irregular heartbeats" was met with a collective yawn. When I asked to go back to the old dosage, I was told, "Oh, you don't want to do that. It would be a huge shock for your body, to cut it way back like that."

"Was it a huge shock to my system when I went up from the old dosage to the new one?" Silence. "I mean, that happened all at once." More silence.

As I suspected, the doctor okayed my request to go back on the dosage of my thyroid meds that I'd been on previously. I got a message on my machine from him, saying, "No problem. We'll switch you back."

THANK YOU.

The pharmacy had been faxing my requests for literally weeks, and the pharmacist had said, "It really isn't a big deal, what you're asking." It didn't feel like a big deal to me, either. I wasn't asking for new medication, narcotics, addictive substances, a diagnosis over the phone - anything outrageous. It was just, "This new dose makes me feel miserable. Can we please go back to the previous one, at least until I can actually come in to the office?"

When I went in to the pharmacy to say, "My doctor called; he okayed the switch back to the old dose," I assumed that someone would have sent a notice of this to them, so that I could get the meds. No. It took 24 hours and another call to the nurse. (Gee, that was fun for both of us.)

This conversation marked the second time I had said to the nurse, "Do you actually have my chart in front of you?" and been met with silence. When someone asks me things like, "When was the surgery?", says, "Generally, what happens is..." and draws a blank when I ask, "What was my old dose?", I think it's a pretty good bet that they do not have my chart in front of them.

Health "care" providers: I don't care if your employer or the federal government or your mother requires you to have a patient's MEDICAL (not billing) info in front of you when you speak to them. It's just generally a good idea. Before you call me to talk about my treatment, pull my file. Realize that if you do not have info about me and my body in front of you when you give me advice and "care," I will think less of you, and of said advice and "care."

Since I don't need to see the surgeon again, barring any more needs to remove any more bits of myself, now this conversation will be taken up with my primary doctor. I don't think it'll be as maddening (but maybe I'm wrong).

I love our family doctor, I really do. There's reasons we chose his practice, and there's reasons we eschewed a pediatrician for our kids in favor of a GP who sees the whole family. Still, I occasionally feel overlooked or unheard. I've had repeat tests ordered more than once, even though I've pointed out that they're repeat, because the doctor has said, "Well, let's just see if anything's changed." In a way, I get that, because my symptoms have tended to be at odds with my test results. The doctor is both trying to make sense of things, and to justify treatment to the insurance company.

It's that last bit that tends to annoy me. Last time I griped to the receptionist because the insurance mandated a repeat office visit instead of simply relaying lab results over the phone, she said icily, "We do have to comply with the law, you know." Yes, I know. I just think that the law cares more about documentation than about people.

I have been referred back to the same endocrinologist I saw (inconclusively) years ago. I hear that she's very good. I remember liking her. Her office staff is also making me furious. In fairness, it's not entirely their fault. It's the culture of Documentation as King.

I was referred nine months ago. Let's say that again - I was referred nine months ago. I have yet to see the doctor. I could have created an entire human being, from scratch and from items I already have around the house, in this amount of time, yet I can't seem to get an appointment with a doctor.

I phoned her office, nine months ago, and predictably got voicemail. (Do not ever tell me that current technology means that people are "constantly connected.") I left a message - "My name is X. I have been referred by Dr. Y. I need to be seen for (list of symptoms)." I got no response - no call back. My kids blamed this on the fact that I don't carry a cell phone, but if they did NOT call back my home number, I think it's a safe bet that they would NOT have called back a cell phone. I left increasingly irritated messages as the weeks, then months, went by, and I still didn't hear back from them. Twice, I finally got a message on my answering machine. They said, "This is Dr. So and so's office, returning your call," but nothing else - nothing with actual content (or an appointment). I started saying things to their machine like, "Just choose any day and time. Leave the message on my machine. I WILL show up." Nothing. In five months, I never spoke to a human being.

Finally, I spoke to a receptionist, who told me, rather irritably, "We cannot make an appointment for you until we have your records."

"Can you get those from my doctors?" I mean, I signed, at each office, the freaking form that says that they may share my info with other doctors also treating me, without my suing them for breaching my privacy.

"No. You have to send those to us." Like I, personally, have them lying around my house.

"What records?"

"Any records pertaining to your diagnosis."

"I do not have a diagnosis. That's why I've been referred to your office." Honestly, I didn't think this was rocket science.

"Well, we need all your records then - all treatment you've received, any labs you've had done. When we get those, I'll call you back and make an appointment with you."

Sure you will.

So I called my GP and I called my surgeon, and had them send everything. I heard nothing back.

I have had so much figuratively on my plate that I let it slide for months. I finally called back yesterday. "Hi, my name is X. I need to make an appointment."

"OK. What insurance do you have?" I'm used to this being the first question doctors' offices ask, but it still annoys me. "Why are we seeing you?" is usually down about six questions.

I told her; "OK, that's good, then," she said. I explained that they'd been waiting for my records. "Let's see if we have those," she said. She started rattling off items received from each doctor and lab. It sounded complete to me, but I'm a layperson. How do I know if those are "complete records"?

Then she said, "What we don't have is a referral from your primary care physician." Good gravy.

"You should have received that last April. April 2012."

"Are you sure?"

"YES. April 2012."

Shuffling and tapping: "Let me look in the computer." Then, "Oh, here it is. It's still in the computer. It was never printed out. That's weird."

OK. They have it. "So can I make an appointment?"

"Well, no. I have to print out this referral and put it in a packet with your records for the doctor to review. After she reviews it and signs off on the form, you can make an appointment. Can you call back on Wednesday?"

Oh, my gosh, truly? She has yet to see documents that she's had, at a minimum, since September? There's a FORM that she has to sign before I can make an appointment? "Yep, this person needs medical care."

"Sure. I'll call back on Wednesday."

It's January 2013.

I will phone them on Wednesday.

I will be pleasant.

I WILL BE PLEASANT.

I will not particularly feel cared for. "Health care" is something of a misnomer.