Stopping lithium?

I too am taking myself off Lithium after 6 years being on it.
Put on 50lbs partly due to the meds, partly due to being sedentary due to total mental breakdown (which the meds didn’t prevent). Now have physical health probs due to my weight.
No-one (GP, HCA, CPN, psych) seem interested in my with struggles or resultant physical health issues and impact on my self-esteem or identity (can no longer play my sports etc).
Therefore, only option open to me is to titrate myself off Lithium so I can pay privately for weight-loss injections (they are contra-indicated with lithium).

No use consulting with any of my care team as they’ve already demonstrated how flippantly they take my weight problem

I’m a psych nurse. Just a question, when you were inpatient were you under section, how long have you been out for and are you currently under the crisis team/CMHT? Bear in mind that if you were under section and this is all very recent, they will likely seek readmission if they feel you’re not complying with medication. Please please talk to your medical team, even if you think they’ll disagree. Just going ‘cold turkey’ has the potential to make you really unwell. You’ve done so well to come this far, don’t sabotage it now. How do you feel that your mood is?

It's important to consult your doctor before stopping lithium, especially with the side effects you're experiencing. Although your lithium levels are low, stopping abruptly could still have risks. Share your concerns about fatigue and the lump with your healthcare provider they can guide you on the safest course of action.

The main things were-—

-constant nausea
-unsteady on my feet
-constant thirst
-emotionally blunt
-shaking

It didn’t do anything for my mood, but coming off it still triggered an episode that landed me in hospital. I know some people swear by lithium, but it was awful for me.

Sorry for the double post, but what do you have to lose by reducing it over 4 or 5 weeks, rather than straight away?

I was also at that level when I stopped (gradually) taking it. It still had a very obvious impact.

Also loads of different things can impact the levels and just because it was lower one day doesn't mean it's always that number

That doesn’t mean it isn’t having some metabolic impact. Just means it isn’t at optimum range yet. You still need to let your medical team know you’re planning to stop a drug and check with them how to safely do it.

I found lithium to be awful. Worst medication I’ve tried—and I’ve been on a lot. However, you need to reduce the medication slowly. I was told that doing it too quickly can caused rebound depression or psychosis. You can’t mess around with jt like this! Cut it back gradually.

PS my partner has always had sleep issues and still does to a lesser extent.

@CatsWhiskersandClaws It's sodium valporate. Good luck and hope you feel better soon x

Thank you so much. It’s good to know that they keep trying and working on finding what works. It’s so individual. I’m sorry he’s had such a rough time and great that the moods are stabilising on the new meds.

I’m currently struggling with sleep disruption - have an emergency medical review next week.

Thank you - it’s nice to have a moment of contact with someone who knows. It’s not something people discuss in the real world.

No problem! I'm so sorry you have this awful illness. He was on lithium for no more than 18 months before it was decided (after constant kidney and liver blood tests) that he should come off. This was 10 years ago and he stayed on Prozac afterwards to keep the depression at bay. He then had COVID (more than once) and consequently now has Long COVID which last year triggered his bipolar again. He is now on different medication but I don't know the name of it and he is away just now. His moods are more balanced since. I'll text him for the name x

Sorry to highjack to thread, but, if you don’t mind answering, was your DP able to find alternative medication that works as well for him? I’m only a couple of years into being diagnosed and I’m still learning to cope with the aftermath of my first episode of hypomania and being sectioned.

It is used for bi polar treatment. In the case of my DP it was successful but he came off it when it adversely affected his kidneys. Definitely DO NOT STOP it except under supervision from your medical team.

I have had a positive experience on lithium. No side effects other than a slight tremor in my thumbs every once in a while. My bipolar tends more to mood elevation. I do go low but not very and not long. I have a lot of sleep disturbance which elevates my mood quickly, but no active episodes of hypomania since I was diagnosed and put on lithium.

Use this thread and make notes to remind you what you want to be talked about when you meet your health support

I had lithium for treatment resistant depression.
I didn’t feel it was doing me any good and I was conscious of how hard it is on the kidneys (but I’d been on it over ten years), so I decided to come off. I actually came off all meds (mirtazapine, Venlafaxine, olanzapine, lithium) I took myself off most of it and stopped seeing the psychiatrist. I have a massive relapse and I’ve since gone back on mirtazapine and Venlafaxine.
I never restarted lithium or olanzapine because my gp can’t prescribe them but the psychiatric clinic keep rejecting my referrals.
Im sort of relieved not to be on the lithium anymore but at the same time, if I was I would be guaranteed to see a psychiatrist til they felt I was ready for discharge and honestly my mood has never fully recovered back to where I was before I started coming off the meds. I thought they weren’t doing anything until I was off them altogether and got really unwell. It sort of crept up as well so it got really bad before I realised what was happening.
If you don’t feel like it’s doing any good, you’re right to come off it but do it under the doctor, with supervision. I have taken myself off meds before but even I wouldn’t mess around with lithium.
If you tell your doctor you don’t want to be on it, you don’t think the benefits outweigh the risks and are firm about it, they should take you off. The only thing is you are so close to being very ill so they might override your judgement until you’re stable.
Ultimately though it is your choice, they can’t force you to take a med you don’t want to be on (except if it was an antipsychotic or something and you were in patient obviously).
If I were you, given how sick you’ve been I would give the lithium a go for a while. If it’s still not doing anything, get your doctor to take you off.

keep taking everything you have been prescribed and Take medical advise and tell them of your concerns

its slightly odd that you say it can’t be having any mental impact and at the same time causing you symptoms - can’t have it both ways

and hope all goes well for you

Even though it's dub therapeutic you could still be getting some benefit. Don't stop.

Lithium is definitely not a drug to do anything with without supervision, talk to the psychiatric team about it.