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.

Illness: Part 7 - Misery Loves Company

I admit it. I was starting to feel invincible.

I haven't been sick since I had my thyroid removed seven months ago. This is unheard of. I was a sickly child, and I became a sickly adult. If there was an illness nearby, I got it first and I got it worst. After my thyroid was removed, however, it immediately felt as if it had been poisoning me. Everything was better without it, absolutely everything.

I was exposed to all manner of illnesses, and caught none of them except for a mild cold. I was tired, congested and had a scratchy throat. It was nothing compared to what I was used to. The comparison would be like the difference between having your washing machine overflow and having to huddle on your roof waiting to be evacuated by helicopter during a townwide flood.

So, yeah, I got cocky. I said to my husband, more than once, "I wonder if it's even possible for me to get sick."

Last weekend, I went with my high school debate team to our state level competition. My son and daughter were both sick, but recovered fairly quickly. By the time we drove home, my husband and I had it. It wasn't too bad. The worst part for me was a sore throat. I had to continually chew gum or drink something to keep it from feeling dried out. I was tired. Still, it wasn't debilitating. I drove over 500 miles without a problem.

A couple of days later, just when I thought it was going away, the illness moved down into my lungs. I started sounding at good moments like Lauren Bacall and at bad moments like Wolfman Jack. I tried to sing along with the radio, and nothing came out except an odd squeak. I'm asthmatic, but I only need an inhaler when I'm sick, so my inhaler was two years old and not very effective. I was feeling exhausted, from low oxygen levels as well as from illness.

I phoned my doctor's office; it took over 24 hours to get an answer on a refill, and I was informed that I'd need lab work before I could get another refill. Already sick and grouchy, this made me grouchier. Labs? Am I suddenly not supposed to be asthmatic?

The inhaler was helping, but then I got hit with a whammy. About 90 minutes after I went to bed, I was woken up by stomach flu symptoms. I won't go into the gory details, but I spent as much of that night in the bathroom as I did in bed, and I seriously feared getting dehydrated.

My husband got the bug, as did my son. It only lasted about 24 hours. The worst of mine was over in about 8 hours, but it hung on for closer to 48 hours. As I write this, I'm hoping it's actually gone.

I have now been miserable for almost a week. I still can't breathe properly, and my insides are still rumbling.

OK. OK. I get it. I can, indeed, get sick. Lesson learned.

Now that we're all clear on this, can we ask the illness to move on?

Illness Part 6: Questions

I think that I might have a cold. The thing is, I can't tell.

After I had my thyroid removed, my entire body chemistry changed. I am not exaggerating - everything changed.

People who've known me for any length of time notice that I feel different. My sister remarked, over the phone and from hundreds of miles away, "You sound so energetic."

The one glitch, switching the dose of my medication, left me miserable for two weeks, but as soon as I spoke to my surgeon, he did what I was sure he'd do and said, "Sure, we'll switch you back." My endocrinologist said, "Most people feel better at higher levels. You're obviously not one of those people." THANK YOU for seeing me as a person and not as a statistic! I cannot stand hearing that something is being done to me personally based on a generalization about "most" people.

I'm sleeping less than I ever did. I routinely wake up five minutes before my alarm. I also actually fall asleep when I go to bed. It's glorious.

I have not been sick in the five months since the surgery. Never, ever in my life have I gone through five illness free months, EVER, and I'm 47. It would be astounding in the summer, but we've gone all the way through fall and most of the winter. I have been exposed to pneumonia, strep throat, laryngitis, the flu, numerous colds, coughs and sneezes, and I have caught none of it. Even my allergies are quiet.

Normally, I get it first, and I get it worst, if there's an illness within what feels like a hundred mile radius. My son has had two nasty bouts of the flu, right here in my house, and I didn't catch it.

Holy cow.

Three days ago, I was unaccountably tired and had sinus drainage down my throat. Well, it's finally happened, I thought. Here comes a cold. I took a nap and woke up feeling much better. "That's odd," I said.

"No, Mom, that's normal," said my teenage son. "That's how it works in normal people."

By that evening, my sinus issues still hadn't gone away. In fact, three days later, I still feel the same way. My throat is irritated, and I'm tired, despite having had a nap. I woke up with a sneezing fit and needed decongestants two nights ago. It's not bad, it's just not good.

On the one hand, I feel draggy enough that it's obviously different. On the other hand, I still feel worlds better than I did even on good days before the surgery.

So I'm still puzzled. Something is going on, but is it enough of a "something" to qualify as "sick?"

Either these are the most pathetic, weenie germs that I've ever encountered, or I don't have a cold. If I don't have a cold, what do I have?

If this is the new "sick" experience, I'll take it.

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.

Illness, Part 4: Symptoms

I know, usually symptoms are part 1 of an illness. Sometimes the timeline doesn't look quite so neat and organized.

After I had my thyroid removed in August, people said things to me like, "Was it making you just miserable?" Well... yes and no. I was certainly aware that the way I felt was not optimal, but it was very normal for me.

I really didn't care to discuss how I felt, either, as most symptoms were vague sounding and lent themselves to armchair diagnoses, and people telling me what I "should" do.

Take fatigue; it's been one of the overriding symptoms of my body chemistry gone wrong. Still, the fact that my body chemistry might be screwed was the last considered possibility on everyone's mental list.

It wasn't a new or alarming symptom. As a teenager, I never pulled an all-nighter, for any reason. Slumber parties always found me being the first one asleep. One of my childhood best friends had a slumber party at her house with half a dozen girls piled into the living room. The stereo was on, kids were dancing, the popcorn popper was going - and in the middle of it all, I was asleep on the floor. It was always like that. I was usually the last one awake the next morning, too. The other kids found me very odd.

I never understood the reasoning behind staying up late to study for a big test. Staying up late would guarantee me that I would do poorly on a test. I've never been intoxicated, but I completely understand why studies show that drowsy driving is indistinguishable from drunk driving. Being tired means that my thoughts, reactions, understanding of situations, reasoning ability, emotions, co-ordination and recall are all deeply impaired. If I wanted to do well on a test, it was best that I get extra sleep.

I've read that if you need an alarm clock to wake up, you're not getting enough sleep. That never made sense to me. "Your body will automatically wake up when you've had enough sleep to be refreshed," I remember reading. HA! I laughed. Without an alarm, I would routinely sleep 12 hours or more, and I never felt refreshed. Ever.

It's always been worse when I'm sick. A couple of years ago, when I had the flu, my kids left me alone until after 3 in the afternoon, when my son finally decided he'd better wake me up. (I'd gone to bed at 10 the night before.) Still, everyone's more tired when they're sick.

"You're sleeping too much," people said. "Sleep less and you'll feel better." It did no good to say, "No. I won't." I had two choices: feel like a total, barely functional zombie, or be functional.

Mostly, people said, "Lose weight and exercise more. Then you'll feel better." I got tired of explaining that I felt exactly the same when I was 12 years old and (literally) half my current weight (and still my current height). I fell asleep in high school classes (especially right after lunch) more often than I wanted to count. At 18, I once fell asleep at my office job. I was doing better as an adult, despite being heavier, because I no longer saw any possible benefit in pushing until I'm totally exhausted.

"It's just a habit," people said. "Train yourself to expect less sleep, and you'll be fine." Ugh. This, again, ignored the fact that, as a parent, I've had to function for weeks (and months) straight on very little, constantly interrupted sleep. I know what it feels like, and doing that for long periods is dangerous. It can be done, but it's not good for anybody.

It took me years to convince my husband that when we go on vacation, I can do early mornings OR late nights, not both. If I push too hard, I will get sick. "Illness is caused by germs," he'd say. "There's no way this will make you sick." He's one of those people who wants to be the first one in Disneyland for Magic Morning hours, and the last to leave Main Street an hour after the park has officially closed. I can't do that.

"You're imagining things. You think you'll get sick, so you do," people said. I'm not a hysteric or an attention seeker. I've actually had to go to an urgent care facility while on vacation on more than one occasion. I'd SO much rather be doing something else, but I can't. Attending a friend's wedding in Palm Springs in August one year, I contracted such a vicious case of bronchitis that it took 3 full courses of antibiotics to kill, and left me with permanent lung damage. Six years later, in Florida in April, my newly acquired asthma (thank you, aforementioned lung damage) left me unable to breathe and scrambling to procure an inhaler.

We learned to take it easy. Still, a vacation (which I truly enjoy) usually meant that I'd be sick, while still traveling or after returning home. Sometimes, my husband and kids would leave me in a hotel room to sleep all day one day, so that I could resume functioning for the rest of the trip.

Seven weeks after my surgery, we were taking a trip that we'd planned for over a year. It meant hotels in 4 different cities over 12 days, a lot of driving, amusement parks, museums, the zoo, the aquarium, family visits, the beach and the wild animal park, all with my entire immediate family of 7. We weren't sure how I'd feel, so I was prepared to take a day off if I needed it. I didn't.

One of the biggest surprises after the surgery was how I felt. "You'll be completely miserable for about 6 weeks," the surgeon had told me. "Then it'll slowly start to get better." I never got to completely miserable. I went from mildly uncomfortable straight up to better than I'd ever felt. Five days after surgery, I was shooting portraits.

I started waking up five to ten minutes before my alarm went off - not once or twice, but regularly. Once, I woke up a full hour before my alarm. I lay there thinking, "Is it just my bladder waking me up? Am I still tired?" Nope. So, up I got, and on with my day. It's happened again. Days when I could sleep in had me waking up and ready to go 45 minutes before my alarm went off.

I rarely needed a nap. I think I took maybe 3 naps in almost 3 months. That's unheard of.

We went through the entire twelve day trip, and I felt fabulous. I didn't sleep in, I didn't get sick, my asthma stayed quiet. I came home thinking, "Oh, it'll hit now." I had a full schedule of rehearsals, photos to shoot, early morning classes to take my son to, and I still felt great.

My husband couldn't get over it. "That trip would have killed you before! You'd be bedridden for days!" I know! It was amazing.

I also - and this was just as amazing - fell asleep within minutes of going to bed. One of the worst parts of the constant exhaustion I'm used to is that it's perversely accompanied by insomnia. It could take 3 or 4 hours to fall asleep, despite being so tired I was nearly in tears. ("It's because you actually sleep too much," people would say. I will not describe how annoying I found that attitude.) Too often, I resorted to Tylenol PM in an effort to fall asleep. Now, I lay down and actually fell asleep! It was amazing and exciting.

Another "normal for me" problem that I've had my whole like is hypoglycemia - low blood sugar. It runs in my family. I never associated it with my thyroid, or considered it "curable."

When you're hypoglycemic, you need to eat regularly, preferably high protein meals. Skipping meals, especially breakfast, can be disastrous. I have scars on my shoulder from the time I passed out, at age 17, while cooking eggs for breakfast and fell against the burner on the way down. Pregnant with my first child at 20, I passed out at the top of a flight of stairs. I learned to make breakfast my first priority.

When you're fat, and I am, people are very skeptical when you tell them what you eat, when and why. We were friends with the manager of a local pizza place, and he noticed my food one day while we had lunch at their buffet. I had 2 slices of pizza and a salad. "Are you on a diet?" he asked. "Are you trying to be good?" No. That's how I eat. If I felt like having half a pizza, I would. I not only don't feel like it, I'm pretty sure I'd throw up if I piled my plate the way some patrons do. That messes with people's heads. They're sure I do a lot of secret eating. I don't. I don't do a lot of secret anything.

I read weight loss stories where people tell how they'd down a whole pizza and a quart of ice cream, then order Chinese takeout before they changed their ways and lost weight and I think, "Holy cow!" I don't care how big or small you are, eating like that is a terrible idea. It's also nothing that I ever did. I don't binge; I don't starve.

When you tell people that you have a medical condition that requires you to eat regularly, or to stop for a snack during the afternoon, nobody thinks anything of it if you're skinny. If you're fat, they say things about "justification" and "denial" (in private if not to your face). It's SO aggravating.

Again, I'm not imagining these issues. Again, low blood sugar runs in the family.

I know the symptoms. If I don't eat correctly (read: regularly and high protein), first I'll feel nauseated and headachy. If I don't fix it, then I start getting disoriented, shaky and weak. If, heaven forbid, I don't fix it then, my ears will start to ring and the color will drain out of everything, leaving it black and white. If I don't get some juice or something else that absorbs quickly into my system at that point, I faint. The rest of my family gets similar symptoms. My son's vision has never gone totally black and white; he gets a pulsing black ring around the edges of his vision.

After the surgery, I've had no blood sugar issues. I once had a granola bar for breakfast and ate nothing else until 2 in the afternoon, and had no problems. It wasn't even a protein bar or a nut bar, just a plain old Quaker Oat bar barely bigger than a cigar. That, again, is unheard of. I didn't even get a headache.

I went in to my surgeon for a checkup after I came home from vacation. Since my thyroid is gone, I'll be taking daily medication for the rest of my life. He started me on a very generic "adult dose," and at my last checkup told me that he'd be increasing the dosage by 25 milligrams. "You should start to feel a lot better, and have a lot more energy. You should also start to lose some weight," he said. Feel better? More energy? That was almost inconceivable; I'd surely be able to leap tall buildings in a single bound.

Soon after switching the dosage, I started to feel run down. I wondered if I was finally getting a cold. Usually, by the end of November, as it is now, I've had two or three ugly ones. I haven't had any this fall.

Nope. Soon I was exhausted, all the time, having blood sugar issues, facing insomnia ... in short, feeling like I did before the surgery.

Worse, I developed one of the symptoms that they had warned me I would develop if I left my thyroid issues untreated - irregular heartbeat. I'll be lying down, trying to sleep, and my heart will start speeding up. Then, instead of a normal "bum bum, bum bum" rhythm, my heart would go, "bum bum, bum bum, bum BAM!, bum bum, bum BAM!" It wasn't even predictable, happening, say, every fourth beat. It happened at random, first after 2 or 3 beats, then after 10 or 12.

After spending almost 2 months feeling amazing, this retreat back into pre-op body chemistry is deeply disturbing. Having heart issues is alarming, so I immediately phoned my surgeon's office and asked to go back to the old dosage. I told them exactly why.

When I say "them," I mean voicemail. I love my surgeon and cannot stand how his office operates. It is harder to get a human being on the phone than it is to win the lottery. I called twice; the pharmacy I use called twice. I finally, days later, got a message on my answering machine from the nurse: "Go get blood work done. We can't change your dose until we know what your blood work says. It will let us know if you need a change."

The worst part of this is that, if they'd actually looked at my chart, they would have seen that my blood work was "normal" BEFORE the surgery. I spent literally 20 years with doctors saying, "Your thyroid is fine. Your blood work is normal." It wasn't until a sharp eyed PA became alarmed by the growths all over my thyroid and referred me to a surgeon that someone said, "Obviously this is not normal!" My surgeon was dismissive of my pre-op blood work, pointing out the gargantuan swelling and unnatural nodules all over my thyroid as being far greater indicators of whether or not something is wrong.

And he was right.

So I phoned the nurse's voicemail back and reminded her of this. Despite assurances by her recorded voice that, "I will get back to you by the end of the day," she did not call back.

Did I mention that I'm experiencing irregular heartbeats? This is not good! I'm shaving my pills down with clippers, trying in vain to cut back my own dose.

Tomorrow, I'm phoning the surgeon's office and simply asking for an appointment to discuss "post-op discomfort or complications." I will not shut up until I get an appointment. I will speak directly to the surgeon, face to face, in an effort to go back to the medication that actually worked for me. And frankly, I will not subject my already angry veins to more blood work unless I have to.

I want the feeling of those two months back! Who knew that "normal" was supposed to feel that good?

Illness Part 3: The Scar

It's a good thing I'm not terribly sensitive about my appearance.

I knew that surgery to my throat would mean a visible scar. I was a tiny bit worried about it, but not too much. I have all kinds of scars, surgical and otherwise, and they don't bother me. I knew from a previous surgery that this particular surgeon left small scars that faded easily, so that was a comfort, as well.

A week or so after I left the hospital, I ran into a friend while out shopping. She asked how I was doing, and noticed a healing wound. "Did they do it laparascopically?" she asked, noticing that the wound seemed small.

"No. That's the surgical drain," I said. Tilting my head back, I said, "This is the scar." She gasped and visibly recoiled. "OH MY GOSH," she said.

I've gotten that reaction more than once. My oldest daughter squirmed, shook her hands and said, "EW EW EW!" the first time she saw it. My husband opined that I look as if "you've had surgery by Sweeney Todd." (A few years ago, only theater geeks would have understood the reference, but now all Johnny Depp fans get it as well.)

My family noticed, as did I, that the other patients on my floor who'd had similar surgeries had simple bandages across their throats, right in the hollow. Sometimes they had a single cotton ball with a strip of tape. I had square of gauze about six inches square across my neck, with bloody rubber tubing snaking out from underneath.

Before I had my grossly enlarged, nodule ridden thyroid removed, the surgeon came into my hospital room and marked my neck right along the natural crease, so he'd know where to cut. The actual cut, about four inches long, is therefore pretty hard to see.

The opening for the drain actually annoys me more. The tubing was held in place by a stitch on either side. When the nurse removed it, she warned me, repeatedly over a few hours, that it would "really hurt." "This has a really wide mouth that flares out under the skin," she said. She had me take deep breaths and brace myself; I was anticipating some real pain. I hardly felt anything.

The cut itself was almost an inch long. The nurse put a SteriStrip over it to hold it closed. She also clipped the stitches across my throat and SteriStripped it before I went home.

("Are you going to wear a scarf or something over that when you go out in public?" my mother wanted to know. "Nope," I said. For one thing, it was August. For another, I think that the general public can handle evidence of surgery. If they can't, oh, well.)

The surgery site appeared to heal well. The drain, however, did not. Ten days after the surgery, I sent this note to two best friends:

Reason 378 Why The Office Staff at My Surgeon's Office Drives Me Crazy

So. My incision is healing nicely, with what looks to be a thin scar, tucked into the fold of my neck. This is what I expected, based on the last time he operated on me and pre op conversations.

The drain opening (I have a drain in my neck!) is another story. When the nurse took out the tubing, she just made one of the SteriStrips for my neck incision a bit longer than the others so it would cover the hole and, in theory, seal it.

It's almost an inch long, and it's not sealing up. TMI alert! Graphic bodily info coming! They told me that if it became obviously infected - smelled bad, had pus, was inflamed and/or draining - I should call them. It hasn't done any of those things, but the SteriStrip was still across it the 2nd day out of the hospital when I noticed that the gap was widening. In the gap (warning! warning!) it looked yellow and shiny. The yellow shininess didn't rub off when I cleaned with gauze, so it's a solid. It's also not a scab. I have come to the conclusion that I'm looking at the subcutaneous fat. The gap is getting wider and wider; it's now about an 1/8 to 1/4 of an inch wide.

I change the bandage twice a day, because it looks too gross to just leave open. I finally decide to call the surgeon's office - always a treat involving phone tag - to see if I can come in and maybe get a stitch or two put in.

Nurse: It'll close on its own.

Me: It's not closing. That's the problem.

Nurse: But it will close. It won't stay open forever.

Me: It's been 10 days. It's getting wider and wider. Do you think that after 10 days those two pieces of skin will reach out and grab onto each other somehow?

Nurse: It heals from the inside out. It'll start healing on the inside. You can put a bandage on it if you want.

Me: It's never been WITHOUT a bandage. They SteriStripped it in the hospital, and I've had a bandage on it ever since that came off.

Nurse: He generally doesn't put stitches in those.

Me: Generally, they heal. This one isn't closing. Do you think perhaps I could have the doctor look at it to see if he needs to treat it?

Nurse: He'll look at it at your follow up appointment.

I finally browbeat her into giving me an appointment tomorrow. I also asked for the results of the biopsy, and pointed out that I'd called on Monday to ask for those results, and hadn't gotten a call back.

Nurse: What labs? I don't see that we have any labs here.

Me: THE BIOPSY. Of the thyroid that was REMOVED last week.

(I mean, I'm just waiting here to find out if I have cancer. No big deal. Don't trouble yourself.)

Nurse: Oh! Well, I'll leave a note for the doctor to call you.

Never mind. I'll see him tomorrow.

                I like my surgeon, but his office staff makes me almost want to resort to violence.

               

                The next day, the surgeon was at least clear and brief. "If I put stitches in that, it'll seal in the infection and it'll get worse." He recommended slathering it in antibiotic cream twice a day, which I was already.

                It eventually did heal, but it's very noticeable. It's lumpy, and much wider than the actual surgery site. Maybe I should be glad that people notice it and not the big one.

                The biopsy was negative, by the way. No cancer. The chance was small, but it was there. It was good news.

                One of my friends is a medical professional, and every time he sees me he handles my throat. "Look at that! It looks great! The swelling is going down!" he says. That makes me happy, too.

Illness Part 2: Surgery

I woke up clearing my throat, which felt remarkably gooey.

A woman's voice fairly barked at me. "Sharon! Stop. Stop that!" Who was this woman? Why was she in my room? Why couldn't I clear a gummy throat?

As I tried clearing it again, despite being told not to, I remembered. I was in the hospital recovery room. I'd had surgery, surgery on my throat. I'd expected to feel soreness, and maybe a pull from the stitches, but instead I felt a slight twinge on the right side of my throat, soreness across my collarbone, and incredible phlegminess in my throat.

"Phlegm. Feel phlegmy. Can't breathe."

"You can breathe," the woman's voice informed me. "Your oxygen level looks good. You're speaking. You can breathe."

"Phlegm. Feel phlegmy!" This woman, I thought, has never experienced their throat closing from phlegm. Unfortunately, I have, and the only way to deal with it is to cough it up. "Can't breathe."

"Let's sit you up and see if that helps." The head of the bed started moving upward.

I opened my eyes, and kept clearing my throat. "She's starting to panic," the woman said to someone else, asking them to call a third person. "I'm going to give you anti anxiety medication, OK? It should help calm you down."

What will calm me down, I thought, is being able to clear my throat.

"Does that help?" she asked.

"No. Not really."

The man she'd called came and listened to me breathe. "I hear some wheeziness. I'll get some albuterol," he told her.

"I didn't hear any wheezing," she said, rather defensively.

I'm asthmatic and phlegmy, I thought. Anti anxiety meds won't help either of those things.

The man brought over a mask and clamped it over my nose and mouth. After a minute or two, both he and the nurse next to me started asking, "Is that better?"

"No. Not really." They had ceased telling me to stop clearing my throat, which was a good thing, since that was the only thing that actually helped. It did seem that being upright was better than lying flat, too.

I cleared my throat to the point that it felt reasonable. It's probably irritation from the breathing tube, I thought. The surgery was supposed to take a minimum of two hours.

My surgeon came by my bed. The first thing he said to me was, "It was larger than I thought – much larger. I had to dig down behind your collarbone." I nodded. I'd expected that from the soreness; in fact, I expected to bruise. Still, my second thought was, "LARGER? How could it be any larger?" It was already apparently The Gland That Ate Cleveland. In my surgeon's office prior to surgery, he'd told me that I had "a minimum of 50 times the normal mass" in my neck. How much bigger could it be?

My surgeon had allowed twice the usual time for a thyroidectomy, but it turns out that I took about an hour longer than predicted anyway. "Are you in the Guinness Book?" people tease me. "Is it on display in a jar somewhere?" If it is, and my surgeon is a keynote speaker at some conference, I don't think I want to know.

My neck itself wasn't sore, as I thought it would be, but there was a pull on the right side when I moved or turned. It turned out to be the surgical drain, a piece of clear tubing extending down to the little collection jar housed in the pocket of my gown, a different gown than I'd had on when I went into surgery. I'd noticed that my pre-surgery gown had a large absorbent pad across the chest; it reminded me of a feminine pad. I was sure that the gown was now too gory to wear. My new gown was fabric, whereas the old one was paper. I didn't mind looking at the tubing, despite its being filled with blood, but I did find the concept of a surgical drain creepy. I'd move and it would pull, and I'd find myself thinking, "I have a drain in my neck!"

My family was waiting for me when they wheeled me out. My daughter saw me going down the hall and said, "Dad, I think that's Mom." I tried to call her name – "Terry Anne!" – and realized that I couldn't raise my voice. The scratchy, growly voice I had apparently only had one volume.

One of the beauties of family is that they know you. They stayed for about half an hour, long enough to be sure that I was lucid, in no pain, and cheerful enough, and then they left. My mother had said to me that morning, "You know that I'm not coming to visit, right?" I'd had to turn down the offer of a friend to sleep in my room with me. When I'm sick or in pain, I want to be alone. My entire plan for the hospital was to sleep as much as is humanly possible. My family knew that solitude was deeply appreciated.

"You think you're going to be able to sleep?" a nurse teased me. "We're going to keep waking you up. We're not going to leave you alone." I knew that, but I planned to try, anyway. I'd brought my favorite hand stitched quilt and a pair of earplugs. My doctor had promised only one night in the hospital, and I intended to hold him to it.

It's hard to sleep when you have that number of tubes and monitors. On my right arm, there was an IV. On my left was an automatic blood pressure cuff that went off roughly every half hour, and a blood oxygen monitor. On my legs were compression stockings and leg wraps that inflated and deflated every two minutes, left leg, right leg, left, right. At first, it's almost like a massage, and then it gets really irritating. Plus, I had a huge, six inch square bandage on my neck, and the tubing (I have a drain in my neck!) snaking out from underneath it. Trying to sleep was interesting, but it was my top priority.

My adorably perky nurse wrote my schedule on the wipe off board on the wall. It said, "breathe deeply, rest, walk," with little boxes to check off when I accomplished something. That was a schedule I can handle.

About 9:30 that night, I phoned my house to share my latest accomplishment." I went to the bathroom by myself!" I told my 24 year old daughter in my raspy, post operative voice.

"That's greeeeaaat, Mom," she said, in an indulgent voice that said she was wondering how many drugs were still in my system. Hey, when you've been cut open, spent hours on the operating table, have a drain in your neck and are surrounded by whirring, beeping machinery, you celebrate every small victory.

After several hours, I resisted ripping everything but the IV out by myself and called the nurse. "Can I get all this stuff off?" I asked.

"Well, it might have to go back on later," she said, but they all came off. Relief! I actually got to sleep for about 3 hours at a time.

I left the next day, relieved to be on the way home to my own bed, and to be able to go to the bathroom without dragging my IV pole with me.

Friends ask me about a diagnosis. "Cushing's? Grave's?" "Why did this happen? What caused it?" my big sister wanted to know. The truth is, I have no diagnosis yet.  Now comes the work of seeing a specialist, regulating the medication I'll be on for the rest of my life, and figuring out my new normal. I'm not sure I'll get a diagnosis.

"You'll be miserable for a while, and then you'll start an upswing," the surgeon told me before the operation. I never actually got to miserable, which is exciting. I think it bodes well.

Illness, Part 1: I'm Not Using It Anyway...

I was sick this spring, and at the doctor for a diagnosis. As is normal procedure, he felt my neck.


"Wow, your thyroid is huge!" he said.


"Yeah. I know." We've been down this road before.


He glanced over my chart, then at me, with my thinning hair, fatigue, coarse facial hair and general roundness, and said, "We need a full blood workup."


"OK – but we've done this before."


The first time was so long ago that I had a different doctor, probably 18 or 19 years ago. The blood panel said that everything was fine. "We'll keep an eye on it," the doctor said.


Years passed. Pregnant with my fourth child, I inexplicably lost weight all through the pregnancy. When I had her, I was 45 pounds lighter than I was the day I got pregnant. It stayed off for a year. I was eating a lot of fresh fruit, since that was my craving with this baby (with my oldest it was salad and eggs; with my third it was ham fried rice.) Still, I was also eating an extraordinary amount of sweets, which I always crave. I was eating more of everything than I ever had before. With two adolescents, a preschooler, a toddler and a newborn, I was also getting very little exercise and craving naps even after I had them.


After almost exactly a year, I started to gain weight. I cut down on sweets, then cut down on all food. The weight crept up anyway.


My doctor – a new one this time –sent me to an endocrinologist to be tested for Polycystic Ovarian Syndrome, based on my difficulty getting and staying pregnant, and the fact that I'd never had regular periods before Baby #4. Suddenly, after the baby, they were showing up every 30 days or so. For someone who regularly went three months without a period, it was actually annoying. "Again? We just did this!"


The endocrinologist felt my neck."Your thyroid is quite enlarged," she said. "Has anyone ever told you that?"


"Yeah, a couple of years ago."


"Did they test it?"


"Yeah. Everything was normal."


She did an ultrasound of my thyroid, then sent me for a complete blood workup. I did not have PCOS, it seemed,and my thyroid function tested normal.


"I'm not convinced," she said. She wanted another test on my thyroid. My portion, after insurance paid out – and we have great insurance – was $500, for a single test. I don't even remember what it was for anymore, but I declined. My PCOS diagnosis was negative, we'd already run thyroid tests, and I was not interested, with 4 kids and one income, in forking over $500 on a possibly unnecessary test.


At least twice more in the intervening years, my doctor has noticed that my thyroid is enlarged, and become alarmed, especially given some of the rest of my history/symptoms. So, he'll again run blood tests, tests that will all say that I'm fine.


So, last spring, I was grumpy and miserable enough that I griped to the physician's assistant when he mentioned doing it again. "We do this every three years or so, and I'm just tired of doing it over and over."


"Well, yes, I can see how that would be annoying."


He flipped back through my chart. "Yeah, last time everything was normal," he said. "We'll just see what comes up this time." He also ordered an ultrasound of my neck.


I have long resigned myself to the idea that if something is wrong, a standard blood test won't catch it. I also don't enjoy getting blood drawn just to hear that I'm fine. I grumped, I procrastinated, but I got blood work done AGAIN, and had a new ultrasound done.


Unlike my endocrinologist, my GP doesn't have an ultrasound machine, so I went down to the huge testing facility in town, where I've had MRIs, mammograms and more.


The technician seemed slightly bored. "So, what makes you think that you have thyroid problems?" she wanted to know.


I was annoyed. I felt as if she had looked at me and was thinking, "Come on, lady, every fat woman in town decides after reading some magazine article that she has thyroid issues. Just lay off the potato chips." I'm not a nut about healthy eating, but I have never in my life, for instance, polished off  a carton of ice cream by myself, as an annoying number of people assume, after no more than looking at me. Besides, I was there under protest.


I answered neutrally, "My doctor has noticed that my thyroid is enlarged. He'd like some tests run."


She had me lay back while she prepped the ultrasound wand. I felt her attention sharpen as soon as it touched my neck. She took a full hour plus to scan my throat, hitting what I think of as the still photo button ever minute or so. When we were done, I was miserable– I hate having my throat touched, much less getting pressure put on it – and dizzy. I went home and commented to my husband, "At least she stopped treating me like a hysteric when she saw that it actually is enlarged."


My blood tests - surprise, surprise–came back normal. My ultrasound, however, showed nodules on my thyroid. My doctor's office referred me to a surgeon. My PA remained puzzled during my follow-up visit to go over the test results – "Whatever they are, they're obviously not impeding function," he said.


I was still grouchy, but at least well enough behaved NOT to say what I thought – "Oh, yes, of course the gland that's been swollen for years and is now covered in unexplained growths must be functioning at its optimum." I just made an appointment with the surgeon.


The nurse ran through the now very familiar list of questions.


Fatigue? "Always."


Difficulty sleeping? "Yes."


Hair loss? "Since I was 16. This (riffling my hair) is all Rogaine."


Difficulty swallowing? "Yes. Even as a kid."


Digestive issues? "I was diagnosed with an ulcer at 20. It hasn't bothered me for years."


Joint issues? "I was just diagnosed with cubital tunnel syndrome." (It's like carpal tunnel, only in your elbow.) I also have knee issues.


Unexplained weight gain or loss? Depression or anxiety? I've been through all of this before. "But my blood work says my thyroid function is normal."


The surgeon felt my neck and dictated to his nurse, "REMARKABLY enlarged thyroid." I giggled. He had me swallow while he felt my throat. He felt all around my neck, then had me meet him in his office.


He was uninterested in talking about my normal blood test results, even when I brought them up. "The normal thyroid is about this long," he said, holding his fingers about an inch and a half apart. Mine, apparently, goes almost up to my jawbone, and down to my collarbone, and maybe even under the collarbone, "but I can't feel down that far." It spreads in the other direction almost ear to ear. "You have a minimum of 50 times the mass and volume that you should," he said. "Enlarged," indeed.


The original plan had been to look at removing the nodules, at least some of them, but he was not interested in trying that. Turning on his computer, he showed me the scans. The largest nodule is about 3 inches across, twice the normal size of the whole thyroid. He showed me more and more. "This one is over 5 centimeters. This one is over 6. This one is 3.5. So is this one." Things that were normally viewed in a single slide took two for me, on both sides of my neck.


I could keep it, he told me, but it was going to start encroaching on my voice box and windpipe. The best option would be to take it out entirely, and put me on daily pills for the chemicals it normally provides.


So, in a week, I go into the hospital. I have to stay overnight, which I am not at all thrilled about, but it's doable. I will leave without a thyroid. "Your operation will take twice as long as an ordinary thyroid removal."


He's making no promises for how I'll feel after it's gone, but the surgeon has made one promise about how I'll look. "You won't recognize your neck," he says.