I’m going to have to cover this topic with one metaphorical hand tied behind my metaphorical back, because some of the important details land in the realm of confidentiality.
Last week, one of my loved ones had a frightening experience, slowly becoming disoriented and confused regarding time, place and language, hallucinating, falling down an unlit staircase and only missing serious injury by pure luck, speaking nonsense, then gibberish, and finally being unable to speak at all. By the time the EMTs were summoned, I was worried that I was witnessing a stroke in progress, which is what the paramedics thought when they arrived.
But it wasn’t a stroke. In fact, the ER doctors couldn’t figure out what was going on. By then the patient was trembling, thrashing around (so much that an MRI was impossible), frightened, angry, aggressive, and talking incessantly but incomprehensibly. They thought it might be a tumor, or an infection, or bleeding, or an interaction of many factors. It was like a “House” episode.
The real reason for the symptoms was that the patient hadn’t filled a long-standing prescription for Levothyroxine, a very common drug ( also known as synthroid) used to treat an underactive thyroid. The weather had been bad and ice was everywhere, so the trip to the CVS was put off one day, then another, then another. An unremarkable few days off the drug, which had been taken regularly for decades with occasional short interruptions, stretched into a week. That, the doctors concluded, had caused it all. Once the drug was injected, complete recovery occurred overnight.
What the hell? The doctor who initially prescribed the treatment had never said, “Once you are taking this, and you will be doing so for life, do not stop, even for a short while, because it is very dangerous.” Nor did the generic version of the drug contain any warnings that would lead one to believe that skipping the dose for a week could cause a life-threatening crash of coordination, judgment, comprehension, cognition and speech. Subsequent doctors who were aware of the medication also never added their own caustions. Even though the medical records reviewed by the ER physicians included the daily dose of Levothyroxine, it did not occur to them that the mysterious symptoms they were puzzling over might have been caused by an interruption of the treatment. Yet I was told by the treating physician at the hospital, “Oh no, this isn’t unusual. Not when the thyroid is involved.”
After this horrible experience, we have been writing and talking to friends, neighbors and relatives who also take the drug—it is cheap and very commonly prescribed. None of them, zero, were aware of the possibility of such a drastic reaction to skipping doses.
If you dig deep, there are references to the dire reactions we witnessed on the web, but most sources list side-effects of taking the drug without mentioning the details of what may be in store if one doesn’t take the drug after a long period of use. WebMd, for example, only says,
Use this medication regularly in order to get the most benefit from it. To help you remember, take it at the same time each day. Do not stop taking this medication without first consulting with your doctor. Thyroid replacement treatment is usually taken for life.
I take a lot of different pills. Every one of them has the same general, non- specific warning regarding stopping the medication, butin every case, what will happen if I stop the medication is obvious. If I stop my gout drugs, I may wake up with a swollen toe and in excruciating pain. If I stop my blood thinner or the drug that controls my life-long irregular heartbeat, I am risking a stroke. And so on. But if skipping one of those drugs will make me go nuts, I need to be told.
Specifically, the possible results of stopping medication need to be communicated as thoroughly as the possible side effect of taking the medication. They aren’t, and you should be able to guess why. There is no legal liability for doctors or drug companies if someone dies from not taking a drug as prescribed, so what do they care? Meanwhile, the lists of possible side effects have grown so long that they are laughable, and useless as well. Because an enterprising plaintiffs lawyer will seize on any malady that might be connected to a drug to press a multi-million dollar lawsuit, pharmaceutical company attorneys make sure that even the most remote negative reaction is included in the drug brochure’s fine print, as well as scrolled across the screen and recited at tobacco auctioneer speed during TV ads. And that doesn’t even get to the question of drug interactions.
My favorite warning is “Do not take XXXXX if you are allergic to it.”
All those warnings about specific risks, no matter how unlikely* of taking a drug, yet no warning of what might happen if you skip a few days….just “Don’t do it.” Government regulators, meanwhile, who produce realms of new, expensive and obtrusive regulations every year, have apparently missed this one.
That is incompetent, negligent and irresponsible on their part, and on the parts of the medical profession and drug manufacturers.
And this very nearly caused a death in my family.
_____________________________
- For illustration purposes, here are all the reported or theoretical side effects of taking ibuprofen:
abdominal pain
acid or sour stomach
belching
bloating
cloudy urine
decrease in amount of urine
decrease in urine output or decrease in urine-concentrating ability
diarrhea
difficulty having a bowel movement (stool)
excess air or gas in stomach or intestines
full feeling
heartburn
indigestion
itching skin
pain or discomfort in chest, upper stomach, or throat
pale skin
passing gas
nausea
noisy, rattling breathing
rash with flat lesions or small raised lesions on the skin
shortness of breath
swelling of face, fingers, hands, feet, lower legs, or ankles
troubled breathing at rest
troubled breathing with exertion
unusual bleeding or bruising
unusual tiredness or weakness
vomiting
weight gain
Less common
Abdominal cramps
stomach soreness or discomfort
Rare
Agitation
back, leg, or stomach pains
bleeding gums
blistering, peeling, loosening of skin
blood in urine or stools
bloody, black, or tarry stools
blurred vision
burning feeling in chest or stomach
change in vision
chest pain
chills
clay-colored stools
coma
confusion
constipation
cough or hoarseness
dark urine
decreased urine output
depression
difficulty breathing
difficulty swallowing
dilated neck veins
dizziness
dry mouth
extreme fatigue
fast, irregular, pounding, or racing heartbeat or pulse
fever with or without chills
frequent urination
general body swelling
general feeling of tiredness or weakness
hair loss, thinning of hair
headache
hives or welts
hostility
impaired vision
increased blood pressure
increased volume of pale, dilute urine
irregular breathing
irritability
itching
joint or muscle pain
lab results that show problems with liver
lethargy
light-colored stools
loss of appetite
lower back or side pain
muscle twitching
nosebleeds
painful or difficult urination
pains in stomach, side, or abdomen, possibly radiating to the back
pinpoint red spots on skin
puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
rash
red skin lesions, often with a purple center
red, irritated eyes
redness of skin
seizures
severe abdominal pain, cramping, burning
severe and continuing nausea
sore throat
sores, ulcers, or white spots in mouth or on lips
stiff neck or back
stomach upset
stupor
swollen or painful glands
tenderness in stomach area
thirst
tightness in chest
unpleasant breath odor
upper right abdominal pain
vomiting of blood
vomiting of material that looks like coffee grounds
wheezing
yellow eyes and skin
Symptoms of overdose
Bluish lips or skin
difficulty sleeping
disorientation
dizziness, faintness, or lightheadedness when getting up from a lying or sitting position suddenly
drowsiness to profound coma
hallucination
lightheadedness or fainting
mood or other mental changes
muscle tremors
not breathing
rapid, deep breathing
restlessness
slow or irregular heartbeat
stomach cramps
sudden fainting
sweating
continuing ringing or buzzing or other unexplained noise in ears
hearing loss
nervousness
crying
depersonalization
discouragement
dry eyes
dysphoria
euphoria
feeling sad or empty
lack of appetite
loss of interest or pleasure
mental depression
paranoia
quick to react or overreact
rapidly changing moods
runny nose
sleepiness or unusual drowsiness
sleeplessness
sneezing
stuffy nose
trouble concentrating
trouble sleeping
unable to sleep
Ethics Alarms 
This was a public service announcement that was well worth the time and effort to post, I’ll share it far and wide. Thank you for sharing the information.
Warnings and disclaimers have become so long and convoluted, I’m betting very few people even bother to go through them all. Same with agreeing to the terms and conditions that one has to have said they have read and agree when going to just about any website to get further into whatever it is that one is doing there. We are drowning in an ocean words. BTW, I agree that the warning “Don’t take it if you are allergic to it” seems pretty stupid, but I’m almost willing to bet that was the result of a lawsuit somewhere. We have forgotten the meaning of the word “terse.”
People often misunderstand the real reasons for lawsuits and then add stupid warning labels for reasons that have nothing to do with what the warning was about. Take the warning labels on coffee, for example. “Coffee may be hot.” That has something to do with the lawsuit against McDonald’s which involved someone spilling hot coffee on themselves and getting burned. The lawsuit, as I recall from a lecture in college, succeeded because McDonald’s was intentionally superheating their coffee so people wouldn’t actually drink multiple cups during a free refill promotion. McDonald’s wanted the coffee to be too hot for someone to drink it while they were in the restaurant so no one would actually ask for the free refills that they advertised. Executives actually said so in memos. It was reasonably foreseeable that superheating the coffee would lead to people burning themselves, and thus negligence when someone got badly burned. The coffee being hot wasn’t the problem, but now to-go cups all warn that the liquid inside might be hot. It’s useless nonsense.
Wow, I hadn’t heard the part about the dangerously hot coffee being a deliberate ploy to get out of a promotional promise. The older I get, the more terrifyingly realistic Dilbert gets. (How expensive even is it for McDonalds to make coffee in bulk, anyway? If they can’t afford it, they shouldn’t have said they’d do it.)
As an engineer by training, I have to say that once you reach industrial temperatures, the phrase “coffee may be hot” is inadequate. Beach sand is hot. Car seat belts in the sun get hot. It makes it seem like the consequences of drinking it are momentary discomfort and reacting in a wacky manner like a cartoon or sitcom character.
If the heat is any more serious than that, it’s standard practice to give a specific temperature and list some expected consequences for what happens if you spill the stuff. Some nice illustrated warning signs are customary as well.
I worked for McDonald’s at the time. We were never told about any attempt to get out of free refills anyway. It didn’t work with our crowd of seniors that sat every morning for a couple of hours.
Well, that was what my professor said. I went and looked it up and do not see some of the details he mentioned, but others are definitely there.
https://www.ttla.com/index.cfm?pg=McDonaldsCoffeeCaseFacts
I don’t know if some of what he said was opinion, or if the internet is hiding stuff.
Glad you posted this just in case I or anyone I know ever takes it. It’s very odd that there wouldn’t be a warning. Anxiety medication has all kinds of warnings about slowly tapering off, so I would expect this one as well.
Sometimes there’s weird side effects to certain drugs. For kids under 16, singulair can sometimes cause suicidal thoughts. My sister’s doctor didn’t prescribe it to her when she was under 16 for that reason, but I had never even heard that before.
I also learned that if someone’s blood sugar drops too low, they can become erratic. It happened to my uncle once. He came out of the bedroom in his underwear and tried to make coffee at 10 at night. He was excited and just not himself. My mom called 911 and the paramedics gave him orange juice. Once his blood sugar stabilized, he went back to normal.
I’ve long noted this as well. So far, my research has uncovered only two drugs where you must take it even if allergic:
* Rabies vaccine following bite by infected animal
* Antivenom for snake bites
The allergic reaction is of little consequence if neither drug is promptly taken when needed.
Incidentally, antivenom is fascinating stuff. They inject small amounts of venom into a horse over several months, and the horse develops antibodies. They then draw 16 pints of blood to isolate a single dose of venom! (The horse is so large that the venom causes no ill symptoms, and that 16 gallons is equivalent by body ratio to a single pint from a human.)
They figured out this technique in the 1800’s, and its the only commercially viable production option thus far. Whole ranches are dedicated to raising horses to farm their antibodies. Some people, unfortunately, are deathly allergic to the horse antibodies; yet the venom is more dangerous still. Thus they have to treat for anaphylaxis and other adverse reactions during treatment for the venom.
You can actually desensitize people to drugs if they need to take what they are allergic to. It is frequently done with aspirin for people who need to take a daily aspirin.
I take levothyroxine.
The doctor put me on a 90-day trial last year with no mention of continuing it. When I went back for a checkup long after the 90-day trial was over, no one mentioned any issues with stopping it. It was recommended that I keep doing it so I’ve continued ever since.
Not one person in the doctor’s office has mentioned the side effects of stopping it.
Thanks for the information.
This is backwards isnt it?
You have to keep taking the drug for the drug to work.
The medication is preventing hypothyroidism. So stopping the medication is what caused the acute hypothyroidism symptoms.
Blaming the medication is like blaming the wall your car just crashed into as the culprit for why you’re injured.
The safety information for that drug doesn’t come with those warnings because the drug isn’t causing them to begin with, the condition is.
Dear Roy,
At no time did Jack blame the medication. Please go back & try to read his post w/comprehension. You may also want to educate yourself more fully on Hypothyroidism & the varying degrees of damage it causes the body. Speaking as a former medical professional, I’m not certain you have a good grasp on the cause & effect of the condition or the medication protocol for it.
Also, while medications that affect the hormone system are crucial to take properly, the treating ER physician misspoke when she stated that the patient’s extreme reaction to missing a week of Levothyroxine was “common”. It’s not. Hormones & lack thereof can absolutely have a major impact on the body but this withdrawal reaction is not typical. It is, however, possible, as was exhibited in this patient’s case, and therefore it should be a mandatory, routine warning to patients from the endocrinologists & internists who prescribe it.
I’m a big believer in being your own advocate and in being responsible for your own health & medication management. Doctors are not magicians. That said, this type of incident is easily avoided when we keep our Oath and ensure patient education is the focal point of the prescribing process.
Like all of your comments, this one makes no sense. I’ll let someone else explain it to you. You just don’t comprehend a lot of these posts, do you? Read the comments guide above, then try to guess which blog condition you are flirting with. I bet you can’t.
I see where you’re coming from. I think the problem is here: “So stopping the medication is what caused the acute hypothyroidism symptoms.” (Emphasis mine.)
I’m going to out on a limb here and say that at the time the patient started taking the medication, there were no such acute hypothyroidism symptoms as what happened recently. Thus, there was no obvious reason to think any such thing would happen so suddenly after a few days with no medication and no symptoms.
Therefore, I conclude that taking the medication caused the thyroid system to adapt to the medication such that stopping the medication led to not only severe symptoms, but also a delayed and subsequently rapid onset of them, which wouldn’t have happened if the medication had never been prescribed. That’s something people would need to be told about, because they wouldn’t automatically know it.
To put it concisely, this isn’t what was happening before the medication, so it was not clear that it would happen when the medication stopped, let alone without a gradual buildup to it.
Jack says essentially the same thing in the paragraph that begins with, “I take a lot of different pills.” You may have missed that.
I have found that in all contexts it’s best to phrase criticism in terms of me being confused and wanting to understand more, regardless of how certain I am. For one thing, sometimes I actually am confused without realizing it. This way I’m much more likely to learn of my mistake, and I avoid being an arrogant jerk to people in the process. Even when I turn out to be right, though, the criticism is well-received when approached in this manner.
I’m pretty sure all those side effects of ibuprofen are also symptoms of the Wuhan Virus…
Relieved to hear you and yours are safe!
I’m concerned about what this means for how human institutions handle risk, responsibility, and consequences. It seems like people should be entitled to have contingencies made clear to them so they know how to prepare. We may want to include the probability (based on testing) of each side effect, and what to do in each case. (That information might need to be supplied online, though. The medication container only has so much surface area.)
Man, am I ever glad I’m off Ibuprofen!
Heard a cowboy song entitled “I’ve Been Used Rought” Best line: “I buy Ibuprofen by the pound; I’ve been used rough.”
What an awful scare you all had! I am so glad they’re better!
Thanks for sharing, I was unaware this kind of medicine could cause that reaction. I didn’t read the comments, but there’s major consequences of getting off most drugs for anxiety and depression too. Most you can’t ever get off of. Over 100,000 die from “adverse drug reactions” annually, but how many are suffering from prescription drug withdrawal? They’re told they’re “safe” when they’re actually not safe. I think even the doctors aren’t aware how dangerous and addictive they are to people. Lots of children are taking these drugs. Hopefully they’ll not be on them for life.
Mrs. Zechman takes this medication too.
On occasion, she runs out and can’t go get the refill right away. After a couple of days, I start to notice subtle changes in her behavior (I would describe her as more erratic) when she herself thinks everything’s fine and nothing’s different at all. (To be fair, I know her better than anyone else and spend more time with her than anyone else, so I’m uniquely qualified.)
It’s definitely true that the body adapts to the presence of the medication. That’s why she has to revisit the doctor every so often (typically 3 months) for a blood test. Based on that test, the doctor may change her dosage.
This, by the way, is a more common cause of running out of pills and not being ABLE to refill it because a doctor visit (or at least a trip to the lab) must happen first, and you can’t always schedule things when you want them, even if you are not the holdup.
At this point, she’s been on it long enough that she has a stash of extras in the cabinet that are the wrong dosage from prior times before the doctor adjusted it. The understanding is that even taking a dosage that’s a bit too high or too low is better than not taking it at all.
The experience of Jack’s “loved one”–probably extreme, but real nonetheless–underscores the reason why.
I’m really glad to hear that everything worked out okay.
–Dwayne