Always thirsty and peeing loads

[Carl]

Hi Alex....I also have ME and had similiar thirst issues for quite some time.
No matter how much water I consumed I felt thirsty.
I was checked for diabetes and fortunately that's not a cause.
Could it be that you're consuming too much salt ?? I know that salt really seems to affect me.

A friend recommended alkaline water instead of regular water. That changed everything for me.
Now I feel satisfied without drinking excessive amounts of water and no longer constantly thirsty.
Your body may need the alkalinity or more electrolytes.

Potassium deficiency due to documented re-feeding syndrome causes an unquenchable thirst for me. I usually have a weak feeling in my arms and legs when this happens.

Hi, @Mcarunnie.

I can't write much on this now. There's info on the site you can search or perhaps others can say more. Another possibility, I know several of us with ME/CFS have diabetes insipidus. It's different than diabetes of the blood. It's of the pituitary gland.

I don't know that most doctors check for this cause it's considered very rare (at least that's what my doctor said).

Anyways desmopressin is one thing that is used to treat it. Need to see a doctor. Preferably an endocrinologist?

Desmopressin has helped a lot with mine. I have problems with dehydration when it's not under control. Though you really need to monitor your sodium levels with desmo cause it drops them which can become dangerously low. Also figure out what dose and how much water works to prevent that cause it's all tied in and affected by each other.

Whatever is causing DI (diabetes inspidus) can go away if you have an underlying infection that is causing it and you treat that. Possibly can go away when other things are fixed tooo.

I hope you're able to get this checked out and feel better. Best to you.

Have you ever had a scan of your pituitary for partially empty sella? The infection which causes CFS can cause destruction of part of the pituitary gland and hypothalamus. That might be why you have diabetes insipidus. When the infection is destroyed, the pituitary (and hypothalamus) should heal.

 

[Jennifer J]

Have you ever had a scan of your pituitary for partially empty sella? The infection which causes CFS can cause destruction of part of the pituitary gland and hypothalamus. That might be why you have diabetes insipidus. When the infection is destroyed, the pituitary (and hypothalamus) should heal.

Thanks @Carl. I'll put that on my list. I'm being treated for an enterovirus now, hoping that will fix this for me.

Just found out this past year, the MRI they did 14 years ago to see if it was cause of a tumor, wasn't the kind of MRI that needed done so it didn't even scan for a tumor, which was the whole purpose of the MRI being done.

Several endocrinologist over the years have seen the results and didn't even notice they did the wrong one. Gosh you really need to stay on top of every aspect of everything being done for you, if only one was well enough to do so.

 

[Sing]

I got this problem of excessive thirst and urination starting in the early years of this illness over 20 years ago. An endocrinologist had difficulty trying to label it after all the testing and just came up with “Partial Central Diabetes Inspidus”, because what I have, and what some other PWME have is not the usual form of Diabetes Inspidus any more than it is regular Diabetes. Instead it is one of many problems stemming from problems with the HPA axis and low endocrine functioning of all kinds.That is how I understand it in general terms. Not the failure of just one gland or a tumor in just one gland but a hypofunctioning of the endocrine system.

My treatment has always been just to drink as much water as I want, to eat plenty of salt and lots of vegetables and some fruit (potassium, etc). Desmopressin might also be the ticket but the pills made me nauseated and my insurance for years wouldn’t pay for the other forms. Fludrocortisone helps somewhat in holding onto salt and water, but I could never tolerate much of that medication either.

I have wondered about Dr. Bell’s idea that we have low blood volume, how that might be playing in?

I also wonder about the contribution of serious orthostatic hypotension and the lack of adequate blood supply to the brain—how the brain could be signalling that it needs more fluid/blood? The brain is not just desperate for more oxygen but more blood, and why couldn’t this be interpretated as thirst?

Sorry for rambling—my brain lacks oxygen and blood. Need to pee. Maybe get a glass of water....

 

[Mcarunnie]

I had an mri which said partial empty sella. But I’m able to concentrate urine on some days. Like on some days I don’t have issue at all and I pee concentrated urine. And there are other days where I go clear urine. I read somewhere about fapping causing this. Or some kind of yeast infection?

Potassium deficiency due to documented re-feeding syndrome causes an unquenchable thirst for me. I usually have a weak feeling in my arms and legs when this happens.



Have you ever had a scan of your pituitary for partially empty sella? The infection which causes CFS can cause destruction of part of the pituitary gland and hypothalamus. That might be why you have diabetes insipidus. When the infection is destroyed, the pituitary (and hypothalamus) should heal.

d a

 

[Mcarunnie]

Potassium deficiency due to documented re-feeding syndrome causes an unquenchable thirst for me. I usually have a weak feeling in my arms and legs when this happens.



Have you ever had a scan of your pituitary for partially empty sella? The infection which causes CFS can cause destruction of part of the pituitary gland and hypothalamus. That might be why you have diabetes insipidus. When the infection is destroyed, the pituitary (and hypothalamus) should heal.

One of the thing is that my wife also got same issue after marriage. This is what makes me think some kind of infection could it be?

 

[Carl]

The micro-organism is not really relevant, the location is. They could be bacteria, yeast, fungi and I am not sure about protozoa. They will be biofilm forming if that rules out any candidates.

Eliminate the biofilm using Quorum sensing Inhibitors, enzymes and items to prevent biofilm reformation. Use a cocktail of Efflux Pump Inhibitors and antimicrobials to destroy them. This does mean addressing all 6 super families of Efflux Pumps which is a big task.

 

[Marchesa]

@Sing
I have to start by apologizing. I read very slowly, and don't have much time to do so, so haven't read as much as everyone else has.

When I learned my labs came back off I took a look. My EGFR (I think) is low. After looking it up, I looked at my previous labs, and found that it was low (in the 50s) for the first several years after I got sick, then above 60, which is all it says, for several years, and is back down, at 53. I looked at a few more web pages and then came here, figuring you ALL know more than I do.

After starting antidepressants (in 2002), I began to have weird blood pressure issues, up than down, diastolic high but systolic not so much, and the median steadily rising. I was put on blood pressure meds. After some time I cut back and then eliminated the BP meds, with reasonable readings. Then my BP shot up to very dangerous levels and the specialist put me on potassium tablets, and told me to avoid salt. On my next appointment my BP was down 20 or 30 points and he raged about the potassium only supposed to drop it 5 points, 10 at the absolute extreme. I now just take a potassium supplement and have nice low BP every time someone checks it, although it can still be all over the place when I check it at home. I was diagnosed with MTHFR by my OBGYN after my last child in 2010, but my GP didn't believe in CFS/ME, nor MTHFR, so I've never been able to go any farther with looking for answers. (The OB doesn't do that kind of testing.)

I searched here for "kidney" and found this conversation and am stunned and concerned about what I've read. I've always been thirsty. Even as a kid, in sports they would say if you are thirsty you are already dehydrated. I have tried everything, including homemade rehydration solutions, since Pedialyte has ingredients I can't have, and nothing helps. I have excellent blood sugar levels, and have for years, so I know I'm not diabetic. Last summer, during a time when I was outside for an extended period, I noticed the more I drank the more dehydrated I became. It took several weeks of looking but finally found sodium capsules and have been taking them ever since. It helps a little, and a couple times I've even had enough fluids for my lips to be pink, but not enough, and I still pee clear all the time. I've never told my doctor about the sodium or the peeing because I am not interested in getting brushed off or scolded.

Learning that the thirst, the peeing, the occasional kidney pain, potassium deficiency, possibly the BP, and bad kidney numbers, could all be related to one or two diagnosable and treatable ailments is mind blowing and frustrating in that there is so much the doctors don't know.

I have a new GP who is more open to MTHFR being real. She is also the first one to mention the kidney function score. I think she might be willing to look for these things.

So, with all that for introduction, what do I ask her to test for and what are the buzz words to use to convince her that I'm not a hypochondriac and motivate her to move forward with testing?

 

[Sing]

Well @Marchesa , I don’t know for sure. But what about the endocrine angle, and testing for your vasopressin level? My new doctor, Dr. Kaufman (a specialist for ME/CFS patients), did find that very low in me, and put me on Desmopressin spray, which I can actually tolerate. That enables my body to hold onto water and to stop the peeing out of all its necessary fluid. While in effect, I pee much less, and have better blood pressure so I can stay upright and walk. But when on it, a check up for one’s sodium level is in order too, since all the body fluid then can lower the proportion of salt in the blood stream. So if that becomes low Iwhile on Desmopressin, then a higher salt intake will become necessary too.

There may be testing needed for a possible pituitary tumor, which is one source of low endocrine functioning too, as well as the other kinds of hormonal testing (thyroid, cortisol, etc.) Those of us with ME/CFS have been seen to have a low functioning HPA axis, without having pituitary tumors, so that may well not be the explanation or type of need. Checking out all the active hormone levels can be very important. Remedying these then will help, but it is seldom the whole problem or cure. It is a only a symptomatic treatment, amending the hormone levels—but very useful—until they reach the « normal » levels.

My memory has become poor, and I do not remember exact tests and methods, but pursuing a full and appropriate endocrine testing is usually very valuable. And finding a sympathetic, respectful and resourceful doctor to help is going to be necessary too. If any of yours brush you off or take you astray with « standard » but inappropriate tests », or take you down a rabbit hole of psychiatric interpretations/remedies, then I would suggest « moving on » until you can somebody who will actually help you.

I also think that those with MTHFR problems, depending on their nature, may need B-12 sub-c injections or sublingual pills, and Methylfolate too. These are not usually « cures » but can also be much needed help to make these B vitamins more accessible.

I hope you have or can find a doctor who is willing to address your needs, so you can become as functional and able as is possible. While « The Cure » and « Best Treatment » for ME/CFS is far from known, it is still usually possible to gain real improvement on some of its symptoms. Keep working towards this, and I wish you the best!

Sing

 

[Pearshaped]

I had that problem (increased thirst and peeing every 15-25minutes) for 1.5yrs.
Its completely gone now and I have no idea why.
What has helped though at worst times was mineral water with high sodium instead of normal tap water.

 

[Marchesa]

@Sing I just saw this reply. Thank you so very much. I have an appointment with the kidney specialist in February. I'll bring this information with me and see how it goes.

 

[BeADocToGoTo1]

I had that problem (increased thirst and peeing every 15-25minutes) for 1.5yrs.
Its completely gone now and I have no idea why.
What has helped though at worst times was mineral water with high sodium instead of normal tap water.

Glad to read this. I have been mentioning the often overlooked angle of water quality where I can as I also found out how much damage my (in the US) tap water was doing.

Whenever anyone is having issues with electrolyte balances and excessive urination always think about the following:

What is the quality of your water? Are you drinking, e.g. mineral, well, tap, bottled (plastic or glass), chlorinated (all US tap water), fluoridated (all US tap water), reverse osmosis, reverse osmosis with minerals added back in, filtered (what kind?), restaurant or cafe water, etc.? Try a few different types of mineral waters (glass bottle of course as you don't want the extra hit of plastic particles and leached chemicals) to see whether that helps.

Also, when you are drinking reverse osmosis (RO) water (i.e. from most water shops), without minerals added back in, you are drinking de-mineralized water which is very unhealthy. For some reason this is very popular in the US from bottled versions, expensive home filtration systems, to water shops, and the deceptive marketing is allowed to call it potable water. Just look at the World Health Organization (WHO)'s report on this.

There is another thread here on electrolyte balancing with potentially useful info:
https://forums.phoenixrising.me/thr...tion-electrolyte-imbalance.77204/post-2248090

And for the original poster, this thread is also a good one to check, as diet, carb intake, insulin etc. is another avenue to pursue:

https://forums.phoenixrising.me/thr...ticles-on-patients-who-did.76351/post-2207141