[MrAbbott]

Hi, next appointment for me at the end of the month. You have already helped me with the questions, but I'd like to add something more in case you can comment.

Lithium and some low-dose Invega keeps my mania to one episode per year. I deem this as insufficient, but I'd first need to ask you a very basic question: for how long can a treated bipolar 1 patient remain stable? how about you? Is your current crisis frequency reasonable?

Lithium has started affecting my thyroids and kidneys. The last I only suspect because I need some extra tests, but my kidney area hurts sometimes, I occasionally have sweaty palms and I pee much more often since last year. I'm having some sexual problems as well and I'm scared for it looks like I'm getting older much faster and lithium is behind all this. I feel fewer energy available, that's for sure... anything rings a bell?


Do you know if lithium effects are reversible? I've read they might be for some people, but not always. My doc never explained all this with much depth; so the more I read, the more I fear. Valproic acid was the alternative for me 6 years ago (no gene-tests ever conducted, they usual in your location?) but as I'm reading now, valproate messes with your liver... I'll ask for more options, but maybe I could still endure 1 year between crisis with no mood stabilizer...I've never "felt" it there keeping me safer... is that normal?have you ever felt its effect on the long run?

I think that's all. I'll politely push for other treatment options in my next appointment - my doc has never liked to change plans. Cheers.

[Nammu]

For me latuda was my miracle drug but it’s an AP and you seem to have more issues with mania than depression. So it may not be what your looking for. I was on lamictal too. You might check out that stabilizer. I’ve been stable now for 5-6 years. Good luck in your search.

[MrAbbott]

Originally Posted by Nammu

I’ve been stable now for 5-6 years. Good luck in your search.

5 years?! Amazing, good for you! Pls take me as disciple ...yes I can't seem to escape the 1 year doom. I'll check lamictal as you suggest, many thanks @Nammu.

[MuddyBoots]

The longest I've been stable was 9 months on lithium/risperdal but I've been addicted to drugs for the past 8 years so I haven't really given myself a chance at long term stability. I'm in hospital-level crisis 2-5 times a year so I really gotta get my shyt together because it's unacceptable. Working on it.

[Victoria'smom]

I'm not stable. But I'm more stable on meds. My highs and lows are almost at hospitalization level. I have mania x2 a year and depression the rest of the time. Before meds it was really unstable

[MrAbbott]

Originally Posted by Miguel'smom

My highs and lows are almost at hospitalization level. I have mania x2 a year and depression the rest of the time.

Yes, my psychosis makes me land in hospital once a year... still finding a way to fix that...

[Soupe du jour]

Originally Posted by MrAbbott

Lithium and some low-dose Invega keeps my mania to one episode per year. I deem this as insufficient, but I'd first need to ask you a very basic question: for how long can a treated bipolar 1 patient remain stable? how about you? Is your current crisis frequency reasonable?

Lithium has started affecting my thyroids and kidneys. The last I only suspect because I need some extra tests, but my kidney area hurts sometimes, I occasionally have sweaty palms and I pee much more often since last year. I'm having some sexual problems as well and I'm scared for it looks like I'm getting older much faster and lithium is behind all this. I feel fewer energy available, that's for sure... anything rings a bell?

Do you know if lithium effects are reversible? I've read they might be for some people, but not always. My doc never explained all this with much depth; so the more I read, the more I fear. Valproic acid was the alternative for me 6 years ago (no gene-tests ever conducted, they usual in your location?) but as I'm reading now, valproate messes with your liver... I'll ask for more options, but maybe I could still endure 1 year between crisis with no mood stabilizer...I've never "felt" it there keeping me safer... is that normal?have you ever felt its effect on the long run?

I think that's all. I'll politely push for other treatment options in my next appointment - my doc has never liked to change plans. Cheers.

I think for some people, at some times, one episode per year is good. For others, not so much. Like everything else, we're all different and sometimes individually different at different times...even on the same meds. After I finally accepted proper treatment, my life was a complete chaos for a good 12 years, partly because of my illness situation itself, partly because of meds, and because of my behavior and lack of mastery of coping skills. Since the end of that period, I've been more stable than probably ever in my life since young childhood. My meds have needed tweaking all along the way, even during these much better periods.

My thyroid was affected after a short time on Lithium, requiring I take thyroid replacement hormone (Synthroid/levothyroxine). I've heard of a couple people whose thyroid recovered a bit, but mine did not. Then I was put back on Lithium a couple years after being off and during an additional 5 1/2 years on it, my thyroid continued to deteriorate to the point of needing 150 mcg of levothyroxine. After then being taken off, because of my kidneys, my thyroid remained damaged. I continue to take 150 mcg levothyroxine even years after Lithium discontinuance. Yea, a bummer, but it's not that big of a deal as long as I keep taking my levothyroxine and getting thyroid function testing done occasionally.

I do think that polyuria/polydipsia (needing to pee a lot and have a big thirst) is not uncommon with Lithium use, however, it can indicate kidney issues. I think you really need to have blood testing done to confirm if you do or don't have kidney damage before assuming so. Kidney area pain could be something else. If they are damaged, it's a matter of quickly discovering it before too much damage is done. Like my thyroid, my kidney damage is a done deal, but I work to keep it from worsening. So far so good, but the kidney thing scares me much much more than the thyroid. Complete thyroid replacement with medication is possible. If kidneys fully fail, you need dialysis or even a transplant. My goal is to keep them healthy and not get other diseases that jeopardize them, like diabetes.

I have heard of people who have few (if any) major side effects from Lithium. I got almost every one on the main list, other than weight gain. I counted 10 total. A few included a change in my skin quality (some wrinkling), some cognitive dulling, some hair loss, balance issues, and cystic acne. The good news was that after about a year off of Lithium, these particular (and most others) faded away. The exceptions are the thyroid and kidney damage.

[MrAbbott]

Originally Posted by Soupe du jour

If kidneys fully fail, you need dialysis or even a transplant. My goal is to keep them healthy and not get other diseases that jeopardize them, like diabetes.

...

The good news was that after about a year off of Lithium, these particular (and most others) faded away. The exceptions are the thyroid and kidney damage.

Thank you Soupe for telling me in detail what my doctor omitted. Knowing about these possibilities is necessary. Take care.

[Fuzzybear]

Originally Posted by MrAbbott

Thank you Soupe for telling me in detail what my doctor omitted. Knowing about these possibilities is necessary. Take care.

I'm sorry your doctor has omitted so much information. I think it does tend to make people worry more when they omit so much. I haven't had good results with the meds I've tried (so far) (long story). Thanks for posting this thread, good luck with your next appointment!