Lowe describes devastating bouts of psychotic mania, and how lithium enables her to lead a functional and productive life, with mental illness held at bay. Until her renal function starts to tank.
I wanted a calmer life. So for the next 13 years, I took my three pink capsules and all was well. I wrote a book, I learned how to cook in an Italian-restaurant kitchen, I had a few relationships that lasted longer than a month, I wrote, I boxed, I traveled, I painted, I took my pills. I was fine.Then, last fall, I saw my primary physician — and he sent me to the nearest emergency room. He was alarmed at my combination of high creatinine levels, damaged kidneys and heart-attack-level blood pressure (185/130). At Mount Sinai Hospital, my doctor’s fears were confirmed in a matter of days: My kidneys were irreparably damaged, an ‘‘uncommon but not rare’’ side effect of long-term lithium use. I was told I could phase out lithium and start another medication, or face dialysis and a kidney transplant in 10 years.It doesn’t really feel like an obvious choice; it just feels like two bad options. Switching meds might mean the return of cornrowed, Eminem-obsessed Jamya and many seasonal gourds. Yet tubing up and cleansing my blood until I get a stranger’s kidney quilted into the rest of my insides is hardly more appealing. Test results indicate that my kidneys are working about half as well as they should; Maria DeVita, a nephrologist at Lenox Hill Hospital, told me that if I am to switch to preserve the kidney function I have left, ‘‘the time to strike is now.’’
Wishing her luck coming off, and I hope it turns out that there is a third and fourth option that work as well for her.
Yes, hopefully the depakote works.
And let's take this moment as a very important PSA to acknowledge that renal (and thyroid) function while on lithium should be checked every 3-4 months if stable, more frequently if not. Many psychiatrists only check renal (and thyroid) function 1 x year when a patient is on lithium - this is (somewhat unbelievably) considered "standard of care," though it is far from best practice and actually quite dangerous. If your psychiatrist is adhering to the once per year "standard of care" model, request that he or she check your thyroid and renal function more frequently. I did not know this and assumed my (ex)psychiatrist was adhering to best practices when I was on lithium and had my thyroid destroyed by the once per year model. Thankfully, high dose synthroid can eventually (perhaps) repair my thyroid; kidneys have no such treatment so I was lucky that my kidneys are intact, but I just got lucky. Thankfully, Lowe's doctor did a better job. Imagine how much harder coming off lithium would be while on dialysis.
Standard of care for Lithium has multiple levels, checking labs at least every 6 months if medically stable, or more frequent if not stable, checking BOTH a TSH and a T4 at least once a year, checking a 24 hour creatinine clearance at least every 12-18 months if on a dose equal or greater than 900mg a day for more than 2 years, and, this one will make colleagues shake their heads incredulously but it is valid, consider lowering dosages if above 1200mg a day if the patient is stable for a year or more. Oh, and that last part about lowering dosages, that seems to apply to almost all psychotropics when patients are stable and dosages are at high levels for what the company making the medication claims are high end daily dosage amounts.
But, psychiatry is a numbers industry, and let me tell you a secret about at least what 50% or more of doctors do when they look at lab results: they just scan the abnormal column on the lab sheet, they don't look at the numbers, and with creatinine numbers ranging from 0.7-2.0 as a "normal value", how many docs miss the patient who had levels of 1.1 for a couple of years and don't pick up when it is now 1.7? Gee, 0.6 difference for a baseline of 1.1 is a 50% increase. DUH!!!
If you want an opinion, Lithium is like Vancomycin, except the time frame of use to the latter is much shorter, but, if an infection would last 6 months but worth the use of Vanco for that period as long as numbers are watched, would the doc giving Vanco let the standard be minimized?
Doubt the malpractice carrier would agree...
It is by Joanna Moncrieff, a psychiatrist who is not anti meds, who feels the evidence is weak for the long term effectiveness of Lithium.
I also found this exert interesting.
""The second found a higher rate of manic relapse in placebo-treated patients compared with those on lithium, but the pattern with which relapses occurred was strongly suggestive of a discontinuation effect. A large majority of relapses occurred in the first few weeks after allocation to placebo, and none occurred in the last few months of the study, suggesting that the point of discontinuation of previous medication was associated with subsequent relapses.""
Before I saw this blog entry by Dr. Moncrieff, I was going to comment on what I felt sounded like the author experiencing discontinuation syndrome and not a relapse when she tried to get off of Lithium. But I am glad I didn't post it since it seems everytime non professionals like me express concern about this issue, we get blown off. So hopefully, the fact that a psychiatrist expressed it will be taken more seriously.
I don't know if Dr. Moncrieff is "anti meds", but she is one of the founders and co-chairs of the Critical Psychiatry Network, and has written three books with the titles of The Bitterest Pills, The Myth of the Chemical Cure, and A Straight Talking Introduction to Psychiatric Drugs. Her MIA article plays to that audience: she says Jamie Lowe "will need dialysis, and a kidney transplant" when that wasn't said or implied at all in the original NYT article. She argues that lithium acts by non-specific "sedative and slowing effects," and that "there is nothing magic or specific" about it. This argument ignores lithium's effect on depression in bipolar disorder, and also that other non-specific sedatives, e.g., benzodiazepines like clonazepam, don't remedy bipolar symptoms nearly as well as lithium in clinical practice. Lithium also appears to decrease both mania and depression in susceptible individuals even when they don't complain of, or evidence, any sedation.
I was surprised Moncrieff ended by implying that antipsychotics and/or anticonvulsants are superior to lithium. In what sense? More effective? Safer? Although lithium has a narrow therapeutic index and presents long-term risks of kidney and thyroid disease, antipsychotics more often cause (relatively immediate) metabolic syndrome, and most anticonvulsants risk liver and blood abnormalities. The hard truth is that all treatments for bipolar disorder, including avoiding meds entirely, require careful risk/benefit balancing. Bear in mind, too, that Jamie Lowe's account of her own mania is hardly the worst it can get. She could still speak coherently and was taking care of her basic needs. When someone is completely incapacitated, even risky meds may be justified. At least Jamie Lowe thought so. (By the same token, this is a strong argument for not OVER-diagnosing bipolar disorder. The inherent risks of bipolar meds make this a grave injustice to patients who don't need to take them.)
Dr. Moncrieff makes some good points about discontinuation relapses, and reinterpreting the research, much as Whitaker does in Anatomy of an Epidemic. It's a real pity that so much pharmaceutical research is relegated to industry, which of course won't spend a dime to learn more about a cheap, off-patent drug like lithium.
Thanks, Steve, for that nice summary. And I also didn't read anything in that NYTimes piece that indicated the writer would need dialysis, people live with chronic renal issues for decades, often with no difficulties. Obviously no severe renal damage because she's still on the lithium with a planned taper date in the months to come.
Having seen the clinical utility of Lithium , one thing I'm sold on is that it's good to keep the levels as low as clinically possible. Even a 300mg dose can sometimes make a huge difference as a augmentation agent. It is known to decrease suicide risk, and it's a powerful agent for both treatment and prophylaxis of mania. Just what I've seen. It doesn't work for everyone, and not everyone tolerates it because it can be sedating for some people, but when it works, it's a great medication to have available.
The hardest thing for me is the monitoring. People hate getting their blood drawn, it's a hassle, and they just don't go. Session after session, I'll say "you need labs" and they promise to go and then don't. (Not everyone, obviously, but some people). No one ever says, "Isn't it time for my labs?" And even when I do note a problem -- like an increasing creatinine level-- it's really hard to convince people to go for a re-draw in a timely fashion. Sometimes I'm left to say, "If you don't get labs, I'm not going to prescribe this medicine." I hate going there, I like to be on the same team, but lithium does need monitoring, and meds that don't are easier to use for everyone.
Once something bad or troublesome occurs, it's hard not to Monday-morning quarter-back it and say, "I wonder if Depakote or Lamictal or an atypical would have worked without causing this problem?" But as you've pointed out, there are risks with all meds, it's good this was caught before the writer had severe kidney failure, and we all agree --Mad in America or Lovin'Life in Vanuatu-- that we need more effective medications with fewer adverse reactions.
In the article, Ms. Lowe wrote, "Maria DeVita, a nephrologist at Lenox Hill Hospital, told me that if I am to switch to preserve the kidney function I have left, ‘‘the time to strike is now.’’ Immediately before that sentence, she wrote, "Yet tubing up and cleansing my blood until I get a stranger’s kidney quilted into the rest of my insides is hardly more appealing." Granted I'm just a regular non-physician, but that seems to imply pretty clearly both that there's significant renal damage and that dialysis was her other option. Also please note that her PMD caught it -- the psychiatrist had not ordered the tests. I don't know about you, but apart from bipolar depression, which I see a psychiatrist-who-also-does-therapy weekly to monitor, I don't see my PMD unless there's something wrong. He says I only need to come in every other year. That's more then enough time for some serious renal/thyroid damage if your psychiatrist isn't monitoring appropriately -- and it is entirely reasonable to expect your psychiatrist to monitor appropriately.
And Dinah, it's awesome that you tell your patients to get labs done. Wish my original psychiatrist who had me on lithium for 4 years had EVER ordered a lab test after the first one -- or told me that kidneys and thyroid should be monitored, and I would have requested it regularly on my own. Maybe your patients wouldn't have, but I would have. (And did request a lithium level purely out of curiousity from my PMD multiple times. Too bad I didn't know I needed to request of my own initiative a TSH creatinine, etc. I absolutely would have. I take my medical health extremely seriously. The Ivy League trained shrink had never mentioned it was needed, and with those credentials and at $300/hour twice weekly, I assumed she was competent. Silly me.) Sometimes, bad practice may be a result of patient non-compliance, but let's not forget those psychiatrists who do not come close to best practices, and just barely hit standard of care. When I came out of her care, my TSH was so high that my current psychiatrist ordered the test a second time assuming it was a mistake, and then the endocrinologist she sent me to couldn't believe it and ordered her own TSH, T3, T4 tests again. I'm quite lucky I had no kidney damage, but I'll be on synthroid for the rest of my life. And you can bet my old shrink isn't paying for my endocrinologist appointments or synthroid copays. I got lucky that's all the damage there was in 4 years time. In 13 like Ms. Lowe? Impossible to guess.
I agree with "J"s comments...I was prescribed lithium by a very qualified psychiatrist who I later found ordered not only lithium levels but thyroid and kidney function tests. Six months later, he left our very small town in Washington State and my care was turned over to an ARNP, as there was no one else available. I saw her for the next 2 years and not once did she perform anything but lithium levels. I was fortunate in that my husband was transferred to Florida. When I established care with a new PCP and she ran initial labs, I was told that I was in level IV chronic kidney disease and my thyroid level was in the tank. She immediately took me off the lithium, of course.
While it is true that some patients may find it difficult for one reason or another to get their labs done in a timely fashion (after all, we ARE "mentally ill"), there are those of us out there who learn the hard way that we are not the only ones who are uneducated. I have learned the hard way to look up EVERY drug I am put on and find out EVERYTHING there is to know about it.
Now I e-mailed this ARNP and of course I didn't receive anything but some weird article about reversing lithium-induced liver problems, which I also had and which have since resolved. I don't blame her for not apologizing, as I'm sure her legal department advised her that doing so would appear to be accepting blame. My reason for e-mailing her was to protect her current and future patients. My only hope is that she has learned from her experience. But incompetence and noncompliance are 2 different things, and psychiatrists must take all precautions to not blame one on the other.
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