Growing into Me with Bipolar

Oh, And I Forgot This


OK, there is yet one more thing.  My lithium causes sodium depletion, which causes blood acidosis because of excess potassium.  That’s the short version, anyway.  So, my shrink does my lithium and lytes every 3 mos, cuz if my lithium level changes, then so does the potassium.  I only see the nephrologist once a year, but he gets cc’d on all the labs every three months.

So, I am supposed to see my kidney guy in February, but for the last week, my ankles have been swelling so they are quite huge, and so that it hurts to sit and move my feet around in any direction.  So, I thought maybe they would make an exception and let me come in in January.  Well, after about 4 calls to them, I finally got an appointment for the 7th.  With my luck, they will stop swelling by then.  In the 5 years I’ve dealt with this, they have only one other time swollen this large and by the time I got in, they were fine that day, so the doctor did nothing.

So, for 5 years, I have only had mild, infrequent swelling.  But this week, they are just huge.  Not pitting, tho,  just normal swelling.  So, the doctors’ office calls and now because he cannot give me diuretcs (contraindicated in people with hyperkalemia), he wants me to follow this diet called ‘The Dash Diet’.  Ok, so I looked it up just before writing this, and I found the information on the Nat’l Inst. of Health site.  So, should be reliable.

Problems with this diet and what the heck was my doc thinking when he recommended it!!!  First, the DASH diet is intended for those with heart problems or high blood pressure.  No where does it mention people with electrolyte imbalances caused by other medication.  I do not have hear disease or high blood pressure.  The second goal of this diet is weight loss.  Well, ok, I am fat.  And I could stand to lose another person’s worth of weight.  But I still have no heart problems or high blood pressure.  And I don’t see how being on a weight loss plan for 10 days is going to fix my swelling caused by excess potassium and no sodium.  And here’s the real kicker about this DASH diet—it is extremely low in sodium (less than 1500mg), and very high (over 45oomg) of potassium.  Um, hello?  Anybody paying attention out there, like maybe mr doc???  My problem is that I release all my sodium because my body thinks the lithium I take is sodium.  So, I have very low sodium counts, and because of that, the potassium has very little sodium to bond with to be excreted through the kidneys.  So, in short, because of my lithium, I have little sodium and because of that, I have really high potassium.  And now my ankles are swelling, and he wants me to do the DASH diet which is low in sodium and high in potassium, to fix my swollen ankles!

Is it just me, or is that just wrong????  So, I should lower my sodium EVEN more than it is, and allow my potassium to get even higher??  which could kill me by an asymptomatic heart attack from the electrical impulses being disrupted??  Which is the reason I see this doc in the first place!!

I am NOT going to even attempt this DASH diet.  The whole idea makes no sense in context of my conditions.  I had faith in this doc, but now that faith is being severely strained.  Why would he make such an obviously contraindicated recommendation???

blue confused emoticon

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Comments on: "Oh, And I Forgot This" (14)

  1. Because he’s an idiot?

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    • ROFLMAO!!!!!!LOLOLOLOLOLOLOLOL!! You made me laugh! (not chuckle, but hearty guffaws). I had a different doc for a couple of years (in the same practice for the same issue) who really was an idiot and had no idea why my potassium was so high all the time, or why my feet were swelling (I’m only 41 and was a normal weight then, and was active cuz I didn’t have a car). But one time, I ended up with my current doc, who knew immediately what the high potassium was, and knew just how to treat it and monitor it. That is the guy who just told me to go on a Heart and Weight diet that advocates the majority of foods that are listed as being high in potassium on the paper I got from this same doc. So, ya, I admit, he really sounds like an idiot, but for 3 years, he’s been pretty spot-on. So, I am gravely concerned about this recommendation, but I’m hoping he has some brilliant reason why it makes sense.

      So, sorry to take advantage, but does going on that diet with my issues seem to make any sense to you? I know, you may not know about this, just thought I’d take a chance and ask anyway 🙂

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      • Yah. Well, OK, maybe I should be sorry about calling your doc an idiot if he isn’t, but at least I made you laugh! OK. I suspect that like many docs these days, he’s not a nutritionist and didn’t read the fine print on the diet. What I would do if I were you is to scour the kidney disease forums (actually the word is “fora” but everyone would think I couldn’t spell) and see what the skinny is on diets for your kind of problem (I think it might be the usual distal-tubule sodium re-uptake dysfunction, but I need to study up on that). It would be a good idea to lose weight in any case, but very slowly and preferably under the guidance of a registered dietitian who knows about Lithium-induced kidney dysfunction (I’m headed in that direction too, sorry to say, and my doc IS an idiot and doesn’t even see it coming). If you were to go on the DASH diet, which by the way is the big fad among the medical types right now, I would totally ignore the sodium reduction recommendations. In my Not At All Humble Opinion, I don’t think there is anything better than the Mediterranean Diet for all-around health and wellness for the long haul. I don’t believe in giving people “diets” that they might stay on for one or two years and lose a ton of weight, but because they’re dying from craving tasty food they just go back to the way they were eating before and there goes the baby with the bathwater. So now you have my dissertation on diets.

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        • Thank you, thank you so much for you advice. I really appreciate it (I’m sure you get hit up all over these ‘fora’ all the time 🙂 )

          Yes, I have Renal Tubular Acidosis 3, drug induced (lithium). Body thinks lithium is sodium, excretes most of the real sodium thru kidney. Then potassium can’t bind with sodium to be excreted, because its all gone and only the lithum remains. So, for 5 years, I have been taking about 2600 mg of Sodium Bicarb each day. Keep my lithium level stable, and its all good.

          Now, he is thinking that if my feet are swollen I am eating too much salt. Which I’m not, cuz I never add salt while cooking, or at the table. And, because of needing a low potassium diet, I don’t eat things like dairy or potatoes (especially not potato chips).

          So, he wants the DASH diet for salt reduction purposes—and that is what makes no sense at all. It makes even less sense if you look at the kinds of food you are told to eat–the majority of them are high potassium foods!

          Well, I know I’ll live, swollen feet or not, til the 7th. Hopefully once there, we won’t need to talk anymore about this really off base diet, and we’ll just move on from there. He wanted to give me diuretics, but those are obviously contraindicated with the existing hi potassium.

          The issue is obviously not a ‘high salt’ related problem. Also, he says taking sodium bicarb is different than dietary salt in your kidneys in relation to electrolyte binding and excretion. I thought the point of sodium bicarb was to replace dietary salt that is being lost? so it would bind with potassium same as dietary salt? or else why do i bother taking it?

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          • Sodium bicarb is a base, so if you are having renal tubular acidosis and your blood is acid, the sodium bicarb serves as a buffer to get your blood pH more like normal. When you ingest it, it splits up into sodium which you need anyway, and bicarbonate which normalizes your blood pH and also does some good deeds in the kidney that I can’t remember.

            Isn’t keeping your ‘lytes balanced in a desert a bitch? When I’m in Israel I’m always fighting it.

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            • kinda, ya its hard to keep my lytes steady. i have to drink an awful lot, for a lot of reasons (lithium = dehydration and danger in sun/heat, + less water in system means less salt and way more lithium= much higher potassium)

              but actually i do ok, since i am always always incredibly thirsty with dry mouth that would make you think i ate the whole sonoran desert. the thirst and dry mouth never stop. i drink about a gallon usually, sometimes more, of water per day.

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  2. He did that because he is an ass! He wasnt listening to you, clearly. I’m glad your not doing that diet. Diets dont even work anyway. Our dietician just says you should eat healthily and not do any diet. Anyway hon, I hope the ankles go down soon and you get the care you need. Thinking of you XX

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    • i think you might be right, i think he remembered most of my problem (i only see him once a year, unless i have some emergent issue, like if this happened only half way thru the year), but he did not remember ALL of my problem, so, i think he made this decision with only some of the information about me in his mind. also, as Laura said in another comment, he may know about the DASH diet, but not about the foods recommended on it.

      Either way, I think he didn’t have at his disposal all my pertinent info, and, he probably was unaware of the nutritionist/dietetic parts of the diet, so he didn’t see that that would have led to dangerously high potassium levels.

      thanks so much carole ann for your support. you are totally right, he really did not hear me properly.

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  3. ~meredith said:

    Diets throw the body into shock–they are sooooooo not helpful when used like plungers. Good for you thinking about what’s going on. I don’t know if this helps, but fruits like watermelon and vegetables like spaghetti squash are high in fiber and water content… which actually helps clean your innards and get the fluid moving. I am so sorry you have to take lithium. I swear… this medication industry seems to line people up for the fancy hospital machines (dialysis, for example), and I just really think there’s a better way. My wife was diagnosed with Celiac disease last year, but over the course of the year, now, we both have much better health and her thyroid medicine level has been dropped twice. We both got heathier, and screw drugs… I swear… they’re just evil, sometimes!

    Hope you get squared away. Really, it’s just not right that you suffer even more for following a prescription plan. And any diet that lasts less than a year is just more harm, more harm, more harm.

    I hope you get to feeling better soon. wow.

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    • ya,its ironic. after 10 yrs of searching and experimenting with meds and combos, i hit on lithium, and within days could tell a difference. lithium was definitely the drug that works for me. and then within a year, i find out i am in a half of a half percent who gets RTA–acidosis characterized by low salt and high potassium.

      so, my choices are keep on the lithium and be mentally stable and well but deal with physical problems that could make me very sick. or go off the lithium and end up mentally unwell, dealing with instability and psychosis, but physically healthy and live longer. its really a catch 22.

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      • ~meredith said:

        I’m really sorry to hear this. I hope you catch 22 new, health-generating opportunities and turn the old ones in for a refund. 😛

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        • lol, that would be great!

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          • …..and if it makes you feel any better (irony font here), I just read a study on lithium and RTA that said that virtually everyone who is on lithium for 20+ years gets end-stage kidney disease, but that like you and I, when given the choice of living longer off lithium, and being unstable/psychotic again, and going around and around the awful cycle of trying to find something else that works, virtually NOBODY went off lithium. Everyone chose to check out a few years sooner from kidney disease, feeling mentally well, rather than add maybe a couple of miserable years by stopping the lithium. Plus, they found that once we start with the kidney disease, stopping lithium does not stop the progression. My creatinine has been steadily climbing, so I know it’s not going to be long before my lytes start getting messed up. And I already have borderline cystic fibrosis. When I get dehydrated, crystals form on my skin! My dog loves it LOL, I’m tasty (more irony font). Sometimes you just have to wonder whose bright idea this whole thing was. Giving us life, and then screwing it up in such weird ways.

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            • i know you are right about lithium induced diabetes or nephrogenic diabetes (?) being progressive even after the lithium is stopped. i know most people get chronic kidney disease after 20 yrs on lithium. but the RTA i thought was different, because it isn’t actually causing any damage to my kidneys. its a ‘pseudo’ kidney disorder. the illness is actually the lytes being off because of the real salt loss (and the mistaking of lithium as real salt) leading to hyperkalemia. i was under the impression that since no actual damage is being caused, this RTA would simply resolve once use of lithium is ceased. the problem is of course, if lithium is ceased, i shall no longer want the longer healthier life as i will revert to being unstable and ill again mentally. if im wrong about the RTA being ‘resolvable’ rather than progressive, i apologize ahead of time, and appreciate you letting me know!

              ps feet/ankles still huge. couldnt even wear flip flops cuz i couldnt push them on far enough today. now that is sad. will find out more at appt on tues, hopefully.

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