Stopping lithium?

[babyt2020]

So I’ve just spent 3 months on a psych ward after a suicide attempt. It was the most horrendous experience of my life. During my time there they tried me on mirtazepine which was titeares up to 45mg then stopped as it wasn’t effective. I am also on venlafaxine which has been titeares up to 225mg. Then for some bizarre reason they thought it was a good idea to add in lithium, I never wanted to take this as it just sounds like a scary medication that is potentially dangerous but I was so desperate to get home I went along with it.

I last had my bloods done 2 weeks ago and my lithium levels were 0.33 so way under the therapeutic level of 0.6-1. I had my bloods redone on Friday and the results will be back Monday. So my question is do you think it’s safe to stop the lithium? I can’t see it having an adverse effect on my mental health, given that it wasn’t at a therapeutic level anyway. Since the lithium was increased to 1000mg every night Ive had severe fatigue and developed a huge painful lump on my neck which I’m convinced is due to this medication ! I’m still on 225mg of venlafaxine which I’m happy to stay on but really really don’t want to be on lithium.

Absolutely do not stop taking the medication without advice from the psychiatrists. It could mean a relapse and back to hospital. If I was you, I would ask your team to arrange an appointment with the pharmacist to answer your questions, and look at what other options are available to you.

If you dont want to take it, the consultant and the rest of the team should be happy to have a conversation about this. You need to be happy with what you are taking, and know the pros and cons of the different types of medication.

I was on lithium for 3 years, it’s a brutal medication! To come off of it, you have to be “weaned off” it’s quite a slow process from what I remember. They also like to overlap this with another antipsychotic drug too.
Lithium made me feel so horrendously numb. Emotionally constipated. I totally understand why you don’t want to take it, it caused issues with my kidneys too that were fine until taking it.
Please speak to your MH team and be honest, there’s loads of other drugs they can try. Have you been on quetiapine before? Do you have a a MH diagnosis?
Hope you’re feeling a little better 🙏🏻 x

Have you had a positive experience of quetiapine?

Sadly no. But I was told I was a ‘rarity’ with how I was on quetiapine, and that is generally works well for most. X

I’ve never had quetiapine and the team seemed baffled as to a diagnosis, they said ‘treatment resistant depression’ I didn’t take the lithium last night so have missed one dose, I just think because it wasn’t at a therapeutic level anyway it shouldn’t affect me? I don’t understand why a metal found on batteries was even ever approved as a bloody medication! 🤬🙄

I know and I’m cross to have ever taken it myself now but I’m always worried about them coming at me with non compliance.
Regardless of how therapeutic it is please don’t stop this cold turkey. Maybe take half the dose for a week, then half of that for another then stop, mine was about 6-8 weeks coming off. X

Also, to put you on the ‘big gun’ meds and not really have a diagnosis is pretty poor.
My diagnosis is bipolar type 2, but it didn’t help much. It’s such a shit process, I’m so sorry OP x

You’ve clearly been quite unwell. Do not stop ANY of your medications without close supervision from your psych team.

Please see a doctor about the lump on your neck. Tell the doctor what medicine you are on. Best to get the lump checked out

Thanks for your response. It made me hugely drowsy, but I might try it again x

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

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

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

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.

Thankyou for all of your replies, it is hugely appreciated! I just think it’s a dangerous medication and I know for a fact that no consideration was given to the fact that o had kidney cancer in February 2024! I had a partial nephrectomy so to be put on a med thats potentially damaging to my kidneys seems crazy!

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

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.

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.

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.

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

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.

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

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

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.

But it hasn’t reached a therapeutic level yet? My levels were only 0.33 last time they were checked which is why I want to get off it now