Unlike after the first surgery, after this second surgery, I'm in no shape to go home. I don't yet know if I'll go home later today.

Today's challenge is getting something I can eat.  Despite me notifying the doctor of my special diet, the word never gets through to the meal prep people.  I'm not about to summon a nutritionist just so they can charge me a $100 for a in-hospital visit. Breakfast consists of coffee (nope: caffiene), orange juice (nope: can't handle fructose), toast (nope: causes ear problems), milk (nope: causes heartburn), a muffin (nope: too many carbs) and a tiniest imaginable scoop of scrambled eggs.  I eat the eggs. (Why the special diet? Read about my symptoms.)

They're still giving me oxycodone, and it's able to reduce the pain enough that I don't need morphine.

More blood tests.  One of them shows unusual calcium readings, so they decide to keep me all day.

Michelle and my dad are back.  I wish I could speak with them to sort of help entertain them a bit, but my voice is almost non-existant.  Michelle is able to twist arms and get some V-8 juice, the only non-water thing I can drink.  Thank goodness she's around.  I'd never be able to accomplish that in my condition. Heck, I'm barely able to respond to questions, much less initiate requests on my own.

The head nurses seem to work 8 hour shifts, so there are three per day. All of them are exceptional. The only thing is I so rarely see them! They show up to say "Hi, I'll be your nurse" and then I might not see them again.  I can only think this means they are off taking care of more urgent cases than mine.

Michelle and I go for a slow walk around the facility. My body is achy, probably from all the lying around, and I'm sluggish, probably from a lack of sleep as much as from the surgery. We bump into someone else who just has a total thyroidectomy.  She's able to speak just fine.

This second night is much better than the first.  The pain is less, but most significantly, there is no parade of techs measuring something nearly every hour.  They've also removed the IV, so I'm not generating as much urine. I actually sleep fairly well.

Michelle arrives by 9 am again. She's a trooper.  Her arrival interrupts a bath that a nurse was going to assist me with. I was sort of interested to learn how that would be done.  Instead, Michelle and I go into the bathroom, which is a combination bathroom/shower.  That is, there is no shower stall, just a hose and showerhead in one corner. The floor is slighly sloped to a drain.  It's an efficient design that impresses me.  Showering and getting my hair washed feels good.

I begin taking Synthroid to replace the hormone the thyroid would have generated. The endocrinologists "give in" and agree to postpone and RAI treatments until I call for them.

By late morning, I'm out the door and riding home.  The ride back is slightly less uncomfortable than the first time because, I suspect, I've had two days to recover. I spend the rest of the day holding the couch down in front of the TV.

Sleeping at home is great.  My head needs support while I get in and out of bed, as before.

It's clear my voice is not going to return quickly.  I can barely speak, and swallowing remains a challenge. The Synthroid pill is so tiny that it takes many swallows of water to get it to go down.  And, actually, I'm not sure it really goes down since I've lost sensation in part of my throat.  I solve the tiny pill problem by inserting it into a larger capsule (pharmacies have empty capsules) and swallowing that.

Something I notice today is that my sense of temperature swings wildly from one moment to another.  Is this the effect of the Synthroid?  One moment, I'm hot, the next cold.

This lack of voice has me depressed.  Speaking was one of the few things I had been able to do. Now I can't do that, nor move, read, eat, breathe or sleep normally.  I feel like a useless lump of flesh.

Michelle and I go outside for a short walk.  We probably do about a quarter mile before I get too pooped (and cold) to continue.

I'm not in a good enough mood to write very much.

I notice that my feet seem to be more sweaty than usual. I had something of this effect after the first surgery too.

The incision is healing up, and has gone from being uncomfortable to itchy. I wish they hadn't used staples to close it because those pieces of metal are annoying.

My Dad visits, but he can't hear me speak.  Michelle and he have a nice time, but I can only sit there and give hand signals.

My feet are definitely sweating more, as well as my hands and armpits. It must be the Synthroid.

By late afternoon, I'm exhausted even though I've sat around most of the day. My legs feel like they have 100 pound weights attached.

Same as yesterday.

I scour the Internet for more info and find one reference that claims whatever voice you regain at 4 to 6 weeks is pretty much all you'll get. That's worrisome, since I'm already about 25% through that period, but have virtually no improvement. But, it's only one site that claims that, so I'm hoping that's bad info.

I return to the hospital to have the staples removed.  Dr. Koch looks down my throat as I attempt to speak and confirms that the muscles on the left are not moving normally. But, he says they are moving some, which is a good sign that the nerves are stunned but not severed.

Another doctor consults briefly and agrees that my speech should return. In his opinion is may take 12 months.

Dr. Koch yanks out the staples.  It's not a pleasant experience, but not too awful.

He also arranges for a voice specialist to visit me immediately. She comes in and we try a few exercises. I can barely do them. She tells me not to speak in a very low-frequency voice (which is the only way I can generate any volume) because that's how I'll end up re-learning how to speak.

She teaches me several exercises to do at home.  They involve prouncing a "yeeeeeeee" sound at a particular frequency as a warm up, then an "ooooo" sound that goes up and down the scale.  I can do very little of each, and I'm pretty discouraged.

My voice is better!  OK, it's not much better, but I can tell a real step forward has been made. Was it the exercises that I started yesterday? Did the nerves wake up?

After much research on the Web, I decide to experiment with my replacement thyroid hormone dose.  Many people report feeling better when they take a combo of Synthroid and Cytomel. I have some 5mcg Cytomel pills. They are so tiny, they are near impossible to break or split, so I smash one into tiny bits, and swallow what amounts to about a quarter of a pill, perhaps 1.5 mcg.

By afternoon, my voice has faded again, but I could actually make enough sound to speak audibly to Michelle at breakfast without a huge effort! Finally, something encouraging.

By evening, my legs are noticeably less heavy.  Maybe the Cytomel is helping.

When I swallow my morning pills, I notice something different: I can feel the cool water sliding down my throat. I had been lacking that sensation without even realizing it!  That's probably why swallowing has been so difficult: the sensation of where the food/water/pill was located was missing. Eating is also like a new experience as I can once again sense the food going down.  Before the surgery, I was so used to that sensation that I ignored it. Now I treasure it!

By afternoon, swallowing is difficult again.

I definitely feel more aware, awake and alert.  That tiny bit of Cytomel is helping.

After a month of doing little more than hanging around the house, I'm getting cabin fever. I drive for the first time since the surgery and do errands at the post office and supermarket. By the time I get back, I'm winded. OK, so my endurance needs to be rebuilt, but it felt nice to be able to do something for oneself for a change.

Despite the exercises, I experience no further voice improvements all week, and I begin to get discouraged.

I also notice that I'm urinating much less than pre-surgery, laregly because I'm drinking less.  I come to the conclusion that I'm drinking less fluids for a simple reason: they "go down the wrong pipe" so many times per day, making me choke and cough, that it's a negative incentive to drinking. I make a mental note to try to do better and concentrate more when swallowing.  By week's end, I routinely have normal feeling in my lower throat again, so that makes swallowing easier.

Dr. Koch writes to me: "I presented your situation to thyroid cancer conference. They saw no problem waiting for I 131 (RAI treatment), even hinting the wait could be indefinite."  That's good news, as I don't want to risk RAI right now.

On Friday I visit with my friend Paul and we go get some pizza. My voice is too weak to be of use in anything but the quietest of settings, so we sit in the restaurant and he talks to me and I return some shrugs, thumbs up, thumbs down signals, and not much else. I can't imagine this is much fun for him. Afterward, we play a boardgame that doesn't require much speech.  Even so, what voice I had is essentially gone by the end of the evening.

But, on Sunday my voice strength takes another step forward. Was it because it had used it so much on Friday? Maybe that type of activity helps wake up the nerves and muscles?

The increased sweating is getting annoying.  A few minutes after I wake in the morning, my feet get damp and cold and pretty much stay that way the entire day.

I decide to check if this is a consequence of the Cytomel, so I stop taking my tiny dose of it. I can feel the difference the very first day, and by the third day, my body is very sluggish. My legs are wobbly when I walk, and the sense of them being very heavy returns.  I can't live like this, so I go back on the Cytomel. In fact, I increase the Cytomel to half a pill, or 2.5 mcg per day to see what that will do.

The debilitating motion sickness that has bothered me for years has abated. Does that mean it was caused by the thyroid?

I'm becoming unusually energetic, and having trouble sleeping. Lots of energy and, in particular, sexual urges. My skin is getting more oily and I start breaking out with acne.  All this makes me feel like a 16 year old again.

I decide that I'm becoming hyper-thyroid, too much hormone, so I decrease the Synthroid from 150 mg to about 115 (taking 3/4 of a pill). Synthroid changes take weeks to make a difference, so I'll wait and see what happens.

The sweating seems somewhat less, but is still enough to be troublesome.

I make a trip about 10 miles from home, and trigger a motion sickness / dizziness bout.  Never has so short a trip triggered this much dizziness.  This feels like a two or three week bout. After years of dealing with this problem, I can tell how long it will take to resolve.  But, what is strange is that the short trip triggered it.

I'm now waking with night sweats.  I assume this is my body reacting to the decreased Synthroid dose. For people who still have their thyroid, I bet when they have night sweats, their hormone level is fluctuating (dropping).  This is not fun.

My voice is very, very slowly getting stronger.  The continued improvement is encouraging. I find that my voice still tires easily, such that a few minutes of speaking dimishes it to inaudible levels. My voice is strongest in the morning, and weakest in the evening.

This matches the daily cycle of voice strength I had pre-surgery, except that now my voice is 80% weaker to begin with.  I had hoped the surgery would correct this. I resume taking garlic supplements, which I had stopped pre-surgery on the advice that it could make the blood thin and cause bleeding. 

In the past, garlic helped my voice remain stronger through the day, and that effect still seems to happen.  With 2 grams per day, I have a semi-audible voice in the evening. It's still a struggle to speak, but better.

Voice has improved another notch, but remains too weak for practical use. If I had a job that required speaking, I would still be unable to do it.

I'm feeling pretty sluggish and the motion sickness shows no sign of letting up.

I increase my Synthroid dose to about 130 units/day.

I drink a carbonated beverage during the evening, and wake that night with nasty stomach pains.

Motion sickness remains significant.  Usually by now it starts to get better. I'm beginning to wonder if my thyroid hormone levels are somehow connected with the motion sickness I've had for years.

Stomach pains not as bad, but still present.

No improvement from prior week.  And, now my foot sweat is worse again.  Seems like it is related to the increasing Synthroid dose.

Stomach still acting up.  Are the thyroid hormones doing this?

I answered the phone this week!  Translation: I deem my voice good enough to be heard. It's still weak, but marginally useful if I don't talk too much.

The motion sickness continues.  This is very unusual.  It began when I cut back the Synthroid dose, and has continued. Sure seems there's a connection there.

I increase the Synthroid dose to 150 units/day, the dose on which I had started. A month ago this had created hyperthyroid symptoms, but does not now.

During the month, my voice recovers to near pre-surgery level. I've yet to test it with a long speech, or by yelling at a ballgame, but for other purposes it seems like it has recovered sufficiently. That's a relief!

I continue to struggle with the motion sickness, and foot sweat. The leg aches go away when I increase my hormone dose, but then return after a week or two.  It's almost as if my body grows tolerant of the hormone.

I finally meet with an endocrinologist for a post surgery visit.

Unfortunately, he does not seem to be the creative problem solver I need, and instead simply follows the standard approach for thyrodectomy patients He rambles on about the necessity of RAI, but is unable to provide any statistics to document the benefits vs. risks. My own research has turned up little, so I was not surprised he also had little.

Despite his inability to document the benefits, he continued to push RAI basically because it is the standard approach.  He got me irritated enough that I had to bluntly tell him my situation.  Specifically, each time I've ignored what my logic told me and instead blindly followed a doctor's recommendation, I've gotten sicker.  My life now consists primarily of being too motion sick to move, too motion sick to read, too much tongue/throat pain to eat, too much ear discomfort to hear, and too weak of a voice to speak.

So, what is RAI going to do for me?  Possibly extend my life, that is, extend this painful torture? My life at present is not worth extending.  Extending it is a negative.

His conclusion was that I must be depressed.  *sigh*

I'm, in effect, partially paralyzed, blind, deaf, dumb, and in constant pain. I told him to fix those problems first and then I'd consider RAI, and risk its side effects because then my life would be worth possibly extending.  That finally got him off the RAI track.

I described my suspicion that the motion sickness coule be related to my thyroid hormone levels because it abated when I was feeling hyperthyroid. He dismissed that as unlikely. He may be right, but to me it's a clear area to investigate. I have little to lose. What are the dangers of increasing the dose?

I told him how my legs ached and that adding a 2 to 5 mg Cytomel daily made the leg aches go away.  He dismissed that as placebo. I told him that I had heard that mercury poisoned people, of which I am one, have trouble converting T4 to T3. He said he would look into that (if he did, he never reported his findings to me).

He wanted to do the obligatory blood test.  His nurse, who claimed to be experienced, jabbed my arm with the needle and struck a nerve.  I nearly jumped off the table from the pain that radiated down to my wrist. For weeks afterward, I have been unable to extend my arm without extreme nerve pain. I now have tingling and numbness in my fingers, and that arm is now of very limited use.

The test results come back in the normal range, but he ups my Synthroid dose from 150 to 175 units daily.

Soon after upping the Synthroid dose to 175, the sweating problem greatly diminishes and my legs are not as achy.

The motion sickness remains very strong.  It's now 3 months since it restarted, an unprecedented bout. To me this makes it very likely there is a connection with my thyroid levels.

Despite the higher dose, I do not have any hyper symptoms, in fact, I'd say I'm slightly hypo.  I'm sluggish, no problem sleeping, no hunger, little interest in sex.

I relate this info to the endocrinologist, and ask him to increase the Synthroid dose. He refuses. He wants to wait for the next blood test, still months away. I'm not doing blood tests now: I'm not going to risk losing use of yet another limb.

My arm is slightly better.  I can now extend it without searing pain.  But, from holding it oddly for several weeks, now my shoulder cramps up.  Typing is a challenge.

I have some extra Synthroid, so I increase my dose to about 188 units per day.

The higher dose of Synthroid (~188/day) reduces my motion sickness problems, but doesn't eliminate them. I decide to up the dose more, and go to ~210 units. Within 48 hours, I notice my eyes are burning and dry. OK, that's probably too much Synthroid, so I cut back to 188 immediately. The burning eye symptom takes about two weeks to mostly go away.

I also notice an increase in floaters, you know, those funky things that float inside your eyeballs. There is in particular a large one that gets in the way of seeing. I go to the eye doctor, but she observes nothing wrong.

The next day, I develop another visual blind spot, same location as always. This is the second time I've gotten such blind spots in response to reducing the Synthroid dose.

So, I do some Web research. I learn that thyroid hormone can influence serotonin levels, and serotonin levels can influence vasoconstriction / vasodilation, and vasodilation is implicated in migraines! I think I'm onto something here! One of the several diagnoses for the blind spot has been opthalmic migraine. One of the many diagnoses for the motion sickness has been vestibular migraine.

I can imagine (I don't know if this is the correct physiology) that an over expanded vein (vasodilation) could press on my optic nerve in such a manner as to create the blind spot. Similar action could press on my vestibular nerves thereby creating signals my brain can't handle, resulting in motion sickness.

OK, so this evidence would tend to confirm that migraine, as diagnosed by the doctors at Johns Hopkins, is correct. I'm excited! Maybe a solution for the symptom is near! Let's try treating this as a migraine with something that influences serotonin levels. I make an appointment with my favorite ENT and hope to "score" some Imitrex or something similar.

The Imitrex cuts back on the headache, but not the motion sickness, and it also causes a bad rebound headache. The neurologist gives me some Amerge also but it's no different. This does not seem like the path to a cure.

We run some other brain and ear tests, and the results are consistent with those of the ENG: there's some small neural deficit on the right side. The trouble is all the docs say the brain automatically learns to adjust for such deficits, and ceases to produce the sensation of motion sickness. That's not happening for me, so my conclusion is that's not the true source of the problem.

The neurologist basically gives up at this point saying she can think of nothing else to investigate.

Since the migraine route did not yield much improvement, I decided to re-look at the thyroid. I try switching from Synthroid+Cytomel to Armour thyroid. It seems to work about as well, plus I don't get the stomach upset.

But there's no real change in my motion sickness, so the doctor who prescribed it advises me to keep increasing the dose. I work my way from 2 grains to 3 daily, and begin to get pounding heart and other hyperthyroid symptoms. Still the motion sickness persists, so I go back to Synthroid+Cytomel.

My arm remains disabled from the botched blood draw, so I head to a new neurologist to investigate both it as well as the motion sickness. He puts me on neurontin, which is good in the sense it has no side effects for me, but is bad because it accomplishes nothing.

Then we try verapamil. Same deal.

Next up is propranolol (inderal). I feel some improvement, followed by the start of one of my trademark bouts of increased motion sickness. I then learn that inderal is also given to counter the effects of an overdose of Synthroid! My conclusion is it's mucking with my thyroid dose, and triggering a worsening of symptoms that's just like that if I can back or miss a dose of Synthroid. So, I stop the inderal.

This whole year has been one bout after another. It takes 3 weeks or so to recover from each, at which time I try to resume something of a more normal like, and trigger the next bout. All this sitting around doing nothing has me putting on weight. At about 175 pounds, I'm now the heaviest I've ever been.

The effects of the inderal have not yet worn off. In particular, I get pressure and swelling in my sinus area, particularly on the right side, and particularly in response to attempts to do anything visual (like type this!). It's painful.

People keep saying thyroid and adrenal problems often go hand in hand, so I start investigating the adrenal angle, and soon learn about adrenal hyperplasia. No doctor has ever mentioned this to me, but it fits quite well with my symptoms!

In adrenal hyperplasia, two of the main three hormones produced by the adrenals are partially to fully blocked. That leads to an increase in androgens, which can cause acne and hirsuitism, both of which I have. It also leads to a buildup of progesterone, and high progesterone causes headaches, migraines and vertigo!

Wow, this is the most exiciting find in awhile. Why has no doctor ever suggested this, or tested more in the area?

I decide to proceed on my own with tests and drug trials. That's where I am as of this writing.