Scared- need advice on longterm lithium use and diabetes insipidus

Hi, I'm new to this site but not new to BP. I'm 46 and was diagnosed BP1 when I was 19. I was put on lithium and though have tried different anti-depressants for short times- have never found one that worked or actually, one I could handle the side-effects of- so it's been me and lithium for 27 years. After months of increased urination, I went to my GP for tests and she's come back with a diagnosis of diabetes insipidus. I've stopped crying for the minute to write this and ask for advice. I'm terrified- beyond terrified. I haven't had a psychotic break in 25 years - I had a hard time accepting my diagnosis and was reluctant to take the lithium but lost reality and ended up psych wards 4 times. My life was totally destroyed those 4 times - did all of this without any support from friends (lost them with diagnosis and acting "weird") or family. We all know lithium has little affect on depression and have rolled with mine as best I could but now I'm so scared. This diabetes insipidus isn't reversible and I know the next move is to go off the lithium but I also know nothing is as affective in controlling mania- the beast has been at bay for 25 years- I can't have it back. So after my rambling- here are the questions: Has anyone out there experience diabetes insipidus? Long term lithium use? Anyone have had manic episodes that are complete psychotic breaks and use an alternative to lithium? One that doesn't cause weight gain? (my life stabilized so well that I felt brave enough to take off the 125 lbs I need to lose and have lost 52 already!) Thanks to everyone taking time to read this.

Welcome to the Community, inphases. I am very sorry about what you are experiencing. I have no experience regarding your concerns. I just wanted you to know I am thinking of you. I hope your doctor is able to address them.

Diabetes insipidus Definition - Diseases and Conditions - Mayo Clinic

I wish you well.

i certainly must respond to your post as i suspect i am also having kidney issues as the result of long-term lithium use. up until 1 yr. ago, i was taking 450mg. lithium daily for 35 years; had blood work done regularly but it seems p/docs were only interested in the lithium levels on the blood work (mine always being below normal since i was on such a low dose for my hypomania); never suspected, until recent research, that long-term lithium use causes renal issues and i am scheduled to see a kidney specialist aug. 26. i am expecting the worse as my internist who has been doing my blood work and the 24-hr. urine test, gave me the nos. from the blood work and some are very abnormal nos. and she's referred me to the kidney specialist.
i have gotten as many medical reports as i can and it seems some of my numbers were high and abnormal over the yrs., yet no dr. ever pointed that out….it was all about looking for lithium toxicity….

i have consulted with a medical malpractice attorney, as well as a product liability attorney and should i get some bad news from the kidney specialist on the 26th, i will then proceed to litigation if either attorney feels that is warranted.

we, as patients, must become aware of the some of the drastic side effects of some of the meds. we are on; only after 35 yrs. did i become aware that lithium, for all the good it did for my hypomania, has damaged my kidneys and shame on the drs. who were so narrowly focused ONLY on the lithium levels of bloodwork done every few months.

i wish you only the best. how much lithium did you take and what is next for you now that you have a diagnosis. i am trying not to freak out or freak anyone else out but we must put the info. out there.

Lithium worked great for my hypomania but like you did absolutely nothing for my depression. I got to the point that I really thought I was just clinically depressed and not BP.

I was on very high doses of the drug and became toxic and just destroyed my body. I ended up with kidney problems. I was borderline diabetic, had high blood pressure and high cholesterol. I had a condition known as Metabolic Syndrome because of the drug. I was taken off of it immediately. It took my body a year to recover from it. that experience left me not wanting to take any kind of medication whatsoever. of course I do take medication but am very careful with it. I'm on drugs that work much better and would never consider taking Lithium again.

I agree with the last post. We need to be responsible in taking these psych drugs. We must be our own advocates and know what we are putting in our bodies. Education of these medications are key.

Welcome to the forum. I'm sorry to hear about your experience. Don't be afraid of the diabetes. You will have to take exceptional care of yourself but it is manageable.

You actually have a lot of options. There are several newer atypical anti-psychotics which are weight neutral for a lot of people and help with both depression and mania (Abilify and Latuda are the two that come immediately to mind). Geodon is a slightly older one which is also weight neutral, but not as good against depression. All the old typical anti-psychotics (Haldol, Stelazine, etc) are weight-neutral and excellent against mania and psychosis, though won't help with your depression much. Lamictal is a newer mood stabilizer which has very minimal side-effects compared to lithium. It's not as good against mania as lithium but excellent against bipolar depression and could help you a lot in combination with something like Geodon to prevent the highs.

In short, there's no need to despair for your stability yet.

I'm sure the diabetes is scary, but I've been watching my mother deal with it for 20 years and once you get used to the routine of testing and taking your medication it's really not so bad. Even insulin these days is pretty painless to administer (and you may not need that, depending on how severe your diabetes is).

I was on Lithium for a while and had to go off it due to kidney damage. They thought it might be diabetes insipidus because my kidneys quit concentrating my urine, and I kept getting lithium toxic because my kidneys weren't filtering the lithium.

I did 3 24-hour urine tests and every one of them came back with abnormal volume (like 8L in 24 hours) but the lab always said everything was fine. They referred me to a nephrologist, and took me off the lithium. My most recent test came back with some abnormalities but the nephrologist said it was fine. Once I was off the lithium I was lucky, my kidneys seemed to bounce back. My urination looks normal again.

Diabetes insipidus is mostly controlled through diet and fluid intake, correct? It's not an insulin based diabetes so you don't have to take insulin or check your blood sugar.

When I had to go off the lithium, my pdoc put me on Abilify. It works better than anything ever has. I hope you find something that helps.

thanks so much for answering. I'm so sorry you're going through this too. For years I didn't have health insurance- about 20 of adult life and lithium is so cheap that no alternative was offered and none that I could afford.

Thank you!! this is a great list to start from!!