Constant dry mouth, frequent clear urination, unable to hydrate, what is going on?

[Replenished]

Hi everyone,
I'm wondering if anyone has experienced similar symptoms or can offer any ideas of what might be the cause?

I do not have a diagnosis of CFS/ME but have had a whole host of random symptoms over the years. The main problem I am dealing with for the past few years is a near constant dry mouth and thirst, and frequent clear urination. It seems no matter what I do, how much I drink, I can never hydrate and fluids are quickly dumped out.

It was suspected I may have Central Diabetes Insipidus (not related to diabetes mellitus) and I had a water deprivation test which showed I wasn't concentrating urine normally, but not far off. The Endocrinologists suspected partial central diabetes insipidus and I was prescribed Desmopressin to use on a trial basis. The desmopressin did reduce the urination to a degree but never improved the thirst or dry mouth. Even if I was retaining fluids better using desmopressin, I never felt hydrated, always felt dry and depleted.

Fast forward a few years and with no further help or ideas from doctors I just tried to put up with the symptoms and used Desmopressin on and off. Every single day I felt horribly dry and dehydrated and it's been a nightmare. I recently decided to try and push for more answers and had a hypertonic saline infusion test which is another method of testing for diabetes insipidus or similar conditions. This test showed I produce Vasopressin normally (the hormone usually lacking in Diabetes Insipidus). So essentially I don't have Central Diabetes Insipidus. Which is good but I still have these horrendous symptoms.

The test results in terms of the numbers would point towards primary polydipsia (psychological cause of habitual drinking). But I know this is not the case, I don't habitually drink at all. I often experiment with dry fasts (not drinking for up to 2 days to see if my urine will begin to concentrate but it still remains all but clear).

So it doesn't look like Central Diabetes Insipidus, it doesn't look like Nephrogenic Diabetes Insipidus, it isn't primary polydipsia and I don't have Diabetes Mellitus. What could be causing this persistent dehydration, dryness and inability to retain fluids / concentrate urine?

Standard blood tests appear normal. I've been tested for sjogrens syndrome and this was negative.

I'm lost. Has anyone experience something similar or know if anything that could be causing this?

 

[Judee]

I have a similar situation with the exception of limiting liquid intake. I am so dry. No matter how much liquid I drink it does seem like none of it gets into my cells.

Also when I drink an electrolyte that is higher in sodium than potassium, I dry out more. However, there have been times when I made a point to eat more potassium and noticed all of sudden my hands were looking hydrated again. (Unfortunately it doesn't seem to work with potassium supplementation.)

This is what I think is happening:

I think the potassium is drawing water into the cell as the sodium potassium pump is doing it's thing. I did see another presentation where the teacher even said that the cells need potassium to even "open the doors" in the first place.

Interesting that the phosphorus ion needs to come from ATP--something I think many of us are short on. That may be why so many of us have cellular dehydration even though we are taking in enough liquids.

The other thing is several ME/CFS doctors have said that whatever is going on with our cells is affecting our phospholipids which makes up the outer wall of the cells. I keep meaning to add more of those to see if that would help but I haven't gotten around to it yet but just an additional thought.

Hope you get some relief. The dryness is awful. My hands get like what I imagine an alligator's skin would feel like. My eyes are affected too. Wonder how this is affecting our organs.

Edit: I have to take licorice everyday for it's anti-viral properties but I just remembered that also can lower potassium.

 

[Replenished]

I have a similar situation with the exception of limiting liquid intake. I am so dry. No matter how much liquid I drink it does seem like none of it gets into my cells.

Also when I drink an electrolyte that is higher in sodium than potassium, I dry out more. However, there have been times when I made a point to eat more potassium and noticed all of sudden my hands were looking hydrated again. (Unfortunately it doesn't seem to work with potassium supplementation.)

This is what I think is happening:

I think the potassium is drawing water into the cell as the sodium potassium pump is doing it's thing. I did see another presentation where the teacher even said that the cells need potassium to even "open the doors" in the first place.

Interesting that the phosphorus ion needs to come from ATP--something I think many of us are short on. That may be why so many of us have cellular dehydration even though we are taking in enough liquids.

The other thing is several ME/CFS doctors have said that whatever is going on with our cells is affecting our phospholipids which makes up the outer wall of the cells. I keep meaning to add more of those to see if that would help but I haven't gotten around to it yet but just an additional thought.

Hope you get some relief. The dryness is awful. My hands get like what I imagine an alligator's skin would feel like. My eyes are affected too. Wonder how this is affecting our organs.

Edit: I have to take licorice everyday for it's anti-viral properties but I just remembered that also can lower potassium.

Thank you for the reply Judee. Very interesting. I will look into this.

Just to clarify when I mentioned dry fasting / limiting fluid intake, that's on a temporary basis in the hope it would trigger my urine to concentrate. As it would for somebody normal when they stop drinking. Outside of these rare occasions of limiting fluid I am drinking a lot, but still with no ability to get hydrated.

 

[raghav]

I too have this symptom. I think it has got to do with aldosterone. Most of us have adrenal fatigue.

https://www.drlamcoaching.com/blog/frequent-urination-and-symptoms-of-adrenal-fatigue/

 

[xebex]

I get a similar feeling at night and found if I don’t eat carbs after 6pm it’s greatly reduced. I wonder if a low carb diet might help? I am certain we don’t metabolise carbs properly (there is some evidence of this) causing some kind of diabetes that is as yet undiscovered.

 

[bensmith]

I get this too.

Damn, ive had trouble witn carbs/blood sugar as well.

 

[Jade7]

I definitely think frequent urination/dry mouth/thirst can be ME symptoms since there is a high concentration of mitochondria in the hypothalamus (which controls the release of ADH/anti-diuretic hormone). And we know mitochondria are impaired with ME. Inflammation in the brain can contribute too.

I would also rule out the possibility of Sjogren's Syndrome, which can frequently be comorbid with ME. That could explain the extremely dry mouth. You can have an autoimmune panel run to look for this.

 

[Judee]

An endocrinologist told me that the licorice doesn't mimic cortisol so much as aldosterone. She said I don't need it but I have tried to go off of it.

I know it does prolong the cortisol clearing but when I tested my cortisol 4x per day, my levels stay pretty much in the normal range. I do make a bit too much in the morning and one time in the afternoon I dip just a bit so that shouldn't really be the reason I need it.

That's why I think it must be because it is anti-viral but who knows. I just know I need it.

Edit: Also I understand that you were just trying to do a mini-test to see what was going on with your urine. We have to do those type of things from time to time to try and figure what's going on with this disease.

 

[Learner1]

I had similar symptoms with low calcium. My doctor suggested drinking coconut water for the electrolytes.

Things that come to mind are the aldosterone/adrenal system and parathyroid?? Have you consulted a clever endocrinologist?

 

[Treeman]

I have this also. I take anti virals, so drink a lot of water now, I used to drink the usual amount before. Still have dry mouth, hands and pee like I'm collecting gold.

When I used to drink alcohol, I used to wee so much that once when I was out on a date many years ago, the girl thought I had another date near the bathroom!

 

[Treeman]

I made a point to eat more potassium

can I ask, what did you eat and in what quantities? Thanks.

I would also rule out the possibility of Sjogren's Syndrome

I was tested but negative, I do however have panhypogammaglobulinemia.

 

[Replenished]

Thanks for the responses guys.

I have seen a couple of endocrinologits, initially it was suspected I had partial Diabetes Insipidus but from further testing it looks as though I produce Vasopressin/Antidiurectic hormone normally so this probably isn't Diabtetes Insipidus.

Unsure what an Endocrinologits can do as this point but can anyone recommend where I could get an online consultation that won't costs me hundreds, with an Endo or somebody that might be able to look into this issues?

Willing to pay if it can get me somewhere but at the same time, none of the Endo's I have seen so far have had any decent ideas or treatment and i'm tight on money as it is.

 

[Judee]

can I ask, what did you eat and in what quantities? Thanks.

I just tend to eat more of foods that I find on "foods high in potassium" websites. So more bananas and fruit that have it. I made a smoothy yesterday with frozen pineapple, 1/2 banana, and some mango. Yum.

I sometimes desperately crave potatoes but have sensitivities to those but still end up eating them once in a while. White beans and spinach are also high in potassium. Best to rotate.

Here are a couple of sites that list them: https://www.healthline.com/nutrition/high-potassium-foods

This one gives actually milligrams per food item which is more helpful: https://www.drugs.com/cg/potassium-content-of-foods-list.html

Usually if I have 2-3 high potassium foods in a day (getting close to probably 1000 additional mgs), I start to feel better and more hydrated. My best day that I remember having for energy was a day where I ate a banana, some spinach, and I think some potato. It was about 5 years ago and I had just read something about potassium affecting aldosterone. I had about 16 hours of energy that day but was never able to duplicate the results again unfortunately.

 

[raghav]

I get a similar feeling at night and found if I don’t eat carbs after 6pm it’s greatly reduced. I wonder if a low carb diet might help? I am certain we don’t metabolise carbs properly (there is some evidence of this) causing some kind of diabetes that is as yet undiscovered.

Have you got a GTT done ?

 

[vision blue]

only thing i can really add here is if you are magenisum deficient, then you won't be able to hold onto potassium no matter how much you ingest. What do your electrolytes and magnesium levels look like?

also would be curius to know what happens when you get IV saline - do you suddenly get all hydrated again and feel beteeer or lose all that too?

I also have low conentrating and my specific gravity is always too low - even if i don't drink anything. docs don't beleive and think i've water loaded before blood tests (same time as getting the urine test) , even if i specifically didn't drink at all. But my volume also can get low. so even when i'm not drinking, i'll have low volume- but still not conentrating. a 24 hour urine test didn;t believe i had collected for the whole 24 hours. I had looked up not conentrating urine combined with low voume and turned up some kidney issue- but can't get docs to believe me because the useless auto calculators show "creatinge clearance" to be in normal range. but its not if you do it the more complicated way which they never do. So if you don't drink much, what happens- to your urine and to your symptoms?

what happens if you go off licorice? i'm wondering if you need it to keep your blood pressure up? licorice raises bp (that's why i cant take it). maybe with the hypovolemia, your bp is too low and the licorice helps.

if your lelectrolytes and mag are normal, and mag supplmening (followed by potassium) doesn't help, ad aldosterone and reinin are normal (there is a bunch of aldesterone type genetic disorders - might even be masked if youre sucking down the licorice)., how about seeing a nephrologist? or is that the folks who short sightedly thought of vasopressin?

 

[xebex]

Have you got a GTT done ?

Not recently but I had gestational diabetes before I got really sick, my A1cs have always showed up clear and I’ve done my own GTT and they also are clear. Just about to do another a1c this week!

 

[Replenished]

only thing i can really add here is if you are magenisum deficient, then you won't be able to hold onto potassium no matter how much you ingest. What do your electrolytes and magnesium levels look like?

also would be curius to know what happens when you get IV saline - do you suddenly get all hydrated again and feel beteeer or lose all that too?

I also have low conentrating and my specific gravity is always too low - even if i don't drink anything. docs don't beleive and think i've water loaded before blood tests (same time as getting the urine test) , even if i specifically didn't drink at all. But my volume also can get low. so even when i'm not drinking, i'll have low volume- but still not conentrating. a 24 hour urine test didn;t believe i had collected for the whole 24 hours. I had looked up not conentrating urine combined with low voume and turned up some kidney issue- but can't get docs to believe me because the useless auto calculators show "creatinge clearance" to be in normal range. but its not if you do it the more complicated way which they never do. So if you don't drink much, what happens- to your urine and to your symptoms?

what happens if you go off licorice? i'm wondering if you need it to keep your blood pressure up? licorice raises bp (that's why i cant take it). maybe with the hypovolemia, your bp is too low and the licorice helps.

if your lelectrolytes and mag are normal, and mag supplmening (followed by potassium) doesn't help, ad aldosterone and reinin are normal (there is a bunch of aldesterone type genetic disorders - might even be masked if youre sucking down the licorice)., how about seeing a nephrologist? or is that the folks who short sightedly thought of vasopressin?

Thanks Vision, very interesting.

I think there are some similarities in what we are dealing with. To answer some of your questions, if I have saline drip, it makes me worse, dryer and dumping out fluid. In terms of what happens when I stop drinking, I will lose quite a bit of water at first then the volume does come right down and I can be urinating only small amounts but not concentrating. I'll be severely dehydrated it seems and with barely any water left to urinate and my urine will still not be dark coloured.

I haven't had my electrolytes checked in a while but they are usually in normal ranges.

Liquorice? Not sure if that question was aimed at somebody else. If not taken it. Would it be a good idea? My blood pressure is generally on the low side anyway.

 

[Judee]

only thing i can really add here is if you are magenisum deficient, then you won't be able to hold onto potassium no matter how much you ingest.

That's good to know. I was taking supplementation without the positive effects that I got with the potassium foods so maybe the foods had magnesium in them as well.

Liquorice? Not sure if that question was aimed at somebody else. If not taken it. Would it be a good idea? My blood pressure is generally on the low side anyway.

If you try it maybe start with a tea so you can control the dilution. Also be aware that it has estrogenic effects. I took the following from this website:

Studies show that licorice can mimic the effects of steroid hormones such as aldosterone and estrogen. The substance in licorice that scientists think is responsible for these effects is called glycyrrhizin. However, because glycyrrhizin causes undesirable side effects, it is often removed from licorice products during processing.

Physiologic activity has also been reported for several other compounds in licorice. Isoflavone compounds also mimic estrogens in the human body, and can kill several strains of bacteria and viruses on contact. Other compounds act as blood thinners and inhibit inflammation. In humans, the compound, carbenoxolone, has been used to treat stomach and esophageal ulcers with positive effects. Scientists think that it increases blood flow to and amount of mucus lining the stomach.

Plus, once you go on it regularly, if you want to stop, you have to wean off of it. I also think I remember that it can possibly affect some adrenal blood tests so you have to be off of it for a while before taking those. I went cold turkey last year before some testing and the endo said I could have created an adrenal crisis by doing that.

Anyway, not trying to scare you. Just wanted you to be aware. Also remember it lowers potassium. I would actually start by upping your potassium foods first in case you are very low and see how much that helps. You don't want to make it worse by the licorice.

Also it only raised my bp about two points. What really helps with my low bp is Mutaflor probiotic but that is another subject altogether.

 

[Replenished]

Read some good things on Glycine and it increasing Vasopressin so have ordered some of that. Even if this may not be a vasopressin issue.

Can anyone recommend a good Magnesium and Potassium supplement? I'll see if that helps with the hydration at all.

 

[Hip]

. It seems no matter what I do, how much I drink, I can never hydrate and fluids are quickly dumped out.

Have you tested for POTS, ie postural orthostatic tachycardia syndrome? POTS is easy to test for at home, using the active standing test (detailed below).

POTS can cause the liquid you drink to be expelled from the body more quickly than usual.

Spoiler: Active Standing Test (Click to View)

To perform the active standing test, you simply lie down horizontally and relax for 10 minutes, and at the end of this 10 minute period, measure your heart rate. Then stand up, and after two minutes standing, measure you heart rate again. After 5 minutes standing, measure your heart rate a third time, and after 10 minutes standing, measure it a fourth and final time. If any of your heart rate measurements taken on standing are 30 beats per minute or more faster than your heart rate while lying down, then you are diagnosed with POTS.

Those aged 12 to 19 years old must have an increase of at least 40 beats per minute in order to be diagnosed with POTS. Ref: 1

I have POTS, and when I wake up, I always feel dry and thirsty, and will immediately drink around 400 ml of mineral water, plus my morning mug of tea.

One treatment for POTS is high doses of salt, and this can help retain the water you drink in your body.