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:
acid or sour stomach
decrease in amount of urine
decrease in urine output or decrease in urine-concentrating ability
difficulty having a bowel movement (stool)
excess air or gas in stomach or intestines
pain or discomfort in chest, upper stomach, or throat
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
stomach soreness or discomfort
back, leg, or stomach pains
blistering, peeling, loosening of skin
blood in urine or stools
bloody, black, or tarry stools
burning feeling in chest or stomach
change in vision
cough or hoarseness
decreased urine output
dilated neck veins
fast, irregular, pounding, or racing heartbeat or pulse
fever with or without chills
general body swelling
general feeling of tiredness or weakness
hair loss, thinning of hair
hives or welts
increased blood pressure
increased volume of pale, dilute urine
joint or muscle pain
lab results that show problems with liver
loss of appetite
lower back or side pain
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
red skin lesions, often with a purple center
red, irritated eyes
redness of skin
severe abdominal pain, cramping, burning
severe and continuing nausea
sores, ulcers, or white spots in mouth or on lips
stiff neck or back
swollen or painful glands
tenderness in stomach area
tightness in chest
unpleasant breath odor
upper right abdominal pain
vomiting of blood
vomiting of material that looks like coffee grounds
yellow eyes and skin
Symptoms of overdose
Bluish lips or skin
dizziness, faintness, or lightheadedness when getting up from a lying or sitting position suddenly
drowsiness to profound coma
lightheadedness or fainting
mood or other mental changes
rapid, deep breathing
slow or irregular heartbeat
continuing ringing or buzzing or other unexplained noise in ears
feeling sad or empty
lack of appetite
loss of interest or pleasure
quick to react or overreact
rapidly changing moods
sleepiness or unusual drowsiness
unable to sleep