For mmmousemaid (also others), re. long-term lithium: On 7/12/21 you made a liberating reply to my..

Question posted by Carter West on 1 April 2022

Last updated on 10 April 2022

... concerns about neurological not renal lithium toxicity, including this:

"long term lithium treatment at even recommended dosages can lead to toxicity ... Lithium affects every cell in the body and cannot be expected to clear entirely over many years of taking it ... Even blood tests showing a safety level do not reflect the true danger of toxicity as the blood tests do not reflect the gradual residual accumulation in the brain."

Following up then, at long last: You said doctoers could learn from the "many good books and articles" on lithium, but my PCP passed on that, saying virtually all the literature focuses on kidney issues, not brain/neurological ones such as mine. Can you give me any citations? Also, you suggested seeing a "lithium specialist": psychopharm, nephrologist, other?

These days I am insisting that docs intensively consider switching patients who've been on lithium for decades over to another mood stabilizer. Also that they wake to the fact that the sum of lithium's toxic effects, esp. neurological, can't be identified via blood tests. Also that they recognize that lithium may cap high moods not at a "normal" level but lower than that, sustaining disabling chronic low-level depression. Your thoughts?

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mmmousemaid 1 April 2022

In the first few years, renal failure is unlikely, but for me at least, in the past 10 yrs. (after 30 yrs. stability) intolerance to lithium increased, i.e. I started getting slower, electric shocks near the end even at tiny dot ingestions; very strange; made me wonder if antibiotics or antihypertensives were not the interactive cause. However eGFR does decrease with lithium and articles in NCIB, books on Lithium Neuropsychopharmacology, Groff et al, the majority on the net, do agree that lithium is related to renal failure. The question is whether Stage 3 can tolerate a smaller lithium dose; However, some articles view this as controversial. Blood tests alone cannot detect neurological damage as you say, because it is a gradual process in the brain and thyroid. However, thyroid and renal terminus damage are pretty exact, though eGFR may not be the best test. Lithium does have its adverse effects, and dose is very important. IMO it should not go higher than 0.8 blood and I think doctors should lower the old procedure of allowing it up to 1.1, esp. after chronic use. Also, more frequent test would be nice.

The thing about lithium is that it covers both depression and mania together, unlike other bipolar meds as much, and it does give a sense of well-being without hypersomnia or depression, like divalproex sodium, for example.

Carter West 3 April 2022

Thanks for your usual well considered and researched reply. My concern is virtually all with neurological effects though, not renal, since no one but you and my former PCP in my experience has referenced those, and those are what's been disabling me significantly for the past 10 months. I'm gradually improving. Neuropathies in both feet since September or so, now colonizing my lower legs, are ever more worrisome though (thankfully I don't have any significant pain from them), and I wonder if lithium's toxic, obviously neurological effects played a role in my contracting them, considering (as you and one psychopharm observed) that lithium can take months or longer to clear (I assume that means from brain and nervous system), even when blood levels show that lithium is gone. The longer you've been on it, the more you'd expect its effects to be hanging around.

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Light- or thick-headedness, exhaustion, balance issues, heart palpitations, and leg weakness remain. All those first came on at the time or shortly before I ditched lithium on my own following my terrifying toxicity attack 5/25/21 – I was desperate – though they've ebbed and returned since then. Maybe my throwing it out without consulting docs is a significant cause. But no one, not my neurologist or my psychopharms, has offered etiology or diagnoses. If I want to, I can work up wholly legitimate fury vs. past psychopharms, NONE of whom showed the slightest inkling that leaving somebody on lithium for decades might not be such a hot idea. My borderline Stage 3 kidney disease confirms that (my blood levels were within range until the toxicity event). But that's not helpful, so I don't. I happen to be headed down to Mass. General's ER today, to follow up on some bad stuff that happened Wednesday, Friday, and Saturday and robbed me of an urgent personal trip to CA costing me many hundred $. I hope to get them to surround me with some crackerjack neurologists. Any further reflections you may have would be most welcome, to say the least.

mmmousemaid 4 April 2022

I'm sorry you did not stop lithium gradually with medical assistance. During the pandemic this may have been hard to do, and I had some problems as well searching for precise instructions. As for how long does it stay in your blood after stopping; not long at all I think, maybe a week? But like other meds, the effects on the body organs, in the case of lithium, bone, thyroid, brain, skin, heart, may be long-term and long-term to reverse. It would be prudent to eliminate other possible causes, such as diabetes for neuropathy, but I agree with you that there have been neuropathic side effects, directly related to lithium discontinuation. I think the sad part of the case, is that they don't really know. In my blue book: "Lithium in Neuropsychiatry" The Comprehensive Guide, Bauer, Grof, and Muller-Oerlinghausen, IGSLi, UK, 2006 on the subject of discontinuation, relapse is emphasized and studied to be high esp. rapid cycling.

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As for long-term sequelae, I think by skimming the topic, more studies are needed. We can only hope that with time there will be a reversal to the earlier condition and these symptoms will fade at least. I personally, would like to find at treament for jitteriness and tremor after discontinuing it, IF that is the only cause. Best of luck to you and others like us. I find clonazepam to be helpful, but unfortunately it has now been more difficult to renew at incrase doses and that one in itself can cause similar problems after long-term use. Go figure. :-)

Carter West 4 April 2022

Thanks again, my friend! All the best to you too .

Unipolar_MDD 10 April 2022

Do you mind telling me what caused your awful toxic event?
Also, are you diabetic - if so do you think lithium is partly responsible?
I'm about to start lithium so I'm trying to educate myself as best as possible.
tx

mmmousemaid 10 April 2022

Answer to Unipolar_MD:

Sorry, I could not find the react button to your question; I am using this for comment on your question: I am diabetic, and I don't know what the zaps where; I think that it was possibly lithium toxicity over prolonged treatment, an allergic reaction development to li, a clonazepam w/d not connected to lithium (also very long term prescription), or a post antihypertensive/antibiotic syndrome. I really don't know. I am getting better slowly.

Unipolar_MDD 10 April 2022

So sorry, but I was asking if Carter West (I believe was the name) is diabetic?
Also what he thought caused his "terrifying toxicity attack 5/25/21".
I think I read thru the thread more completely now and it seems that he (nor you) really know what caused this event. The conclusion seemed to be that being on lithium for 10 years or more greatly increases the risk of any/all health related issues. Furthermore, that even if you get routine blood tests (which in the US are every 6 mo.) you may not be able to predict such events -- even
if you are hydrated, ect.
It's just so frightening starting this drug, but if it helps with my depression it will be well worth the trouble. I also don't want to feel "flattened" emotionally, because that is one of my main problems with depression currently (I have no ability to feel "happy"). But I'll just have to see what happens. Anyway, thanks for all the advice you offer. Much appreciated.

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For mmmousemaid (also others), re. long-term lithium: On 7/12/21 you made a liberating reply to my..

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