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Diabetes insipidus weeeee

heapsreal

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A recent uneventful visit with immunologist. Uneventful when u have to explain to him about nk cells 2 appointments in a row.

I did show some electrolyte problems which have shown up in the past which my gp says i was probably dehydrated that day. I piss like a racehourse 365 days a year, measuring my own 24 urine levels, 9.5ltrs in the past.

Anyway immuno ordered a 24hr urine. I saw my gp and said i couldn't be bothered with it as i will just see some other specialist bla bla bla. My gp said do it as i dont need to see a specialist as its something he can prescribe ie desmopressin (i have asked for before).

Today I'm catching weeee, 8hrs down and 4.5ltrs. From what i have read over 3ltrs can be diagnosed with DI, normal urine output 1.5ltrs.

I have posted threads on this in the past but havent got far medical wise. I think because its initiated by a specialist (who knows bugger all about nk cells) , makes it easier for my gp to treat. Because he is one of the few cfs drs he is heavily scrutinized , so dont blame him.

Have others found cfs symptoms improve after desmo. Also found it easier to get further investigations like mri on hypothalmus and pituitary etc. I belive believe my insomnia and adrenal fatigue /dysfunction is probably from this as well as low testosterone .

I think my hypertension is due to some damage to hpa especially after my shingles episode this year that really shot my bp up.

Time will tell?
 

Marco

Grrrrrrr!
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Near Cognac, France
I piss like a racehourse 365 days a year, measuring my own 24 urine levels, 9.5ltrs in the past.

Today I'm catching weeee, 8hrs down and 4.5ltrs. From what i have read over 3ltrs can be diagnosed with DI, normal urine output 1.5ltrs.

I can relate. Good also to have some sort of metric to compare to.
 

Thinktank

Senior Member
Messages
1,640
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Europe
@heapsreal, I've tried desmopressin and it has not helped with any symptoms but it reduced the excessive urination, although my volume is not so extreme as yours, and after trying desmo a few times i doubt it's caused by low ADH because i get some nasty side effects from it.
Sharp stabbing pain in brain, blood pooling in hands and arms (veins hurt so i have to keep my arms up), feeling as if i have to urinate but can't and exacerbation of asthma.

I do not always suffer from excessive urination but when i do it starts with muscle and joint pain, then within a few hours i lose 2kg in fluid, it seriously feels like all the moisture is being sucked out of the cells!
Anyone with a similar experience?

This has been going on for too long so i'm in the process of creating a list of tests to do.
I suspect it's a part of my dysautonomia, maybe something with the catecholamines going wrong.
 

heapsreal

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@heapsreal, I've tried desmopressin and it has not helped with any symptoms but it reduced the excessive urination, although my volume is not so extreme as yours, and after trying desmo a few times i doubt it's caused by low ADH because i get some nasty side effects from it.
Sharp stabbing pain in brain, blood pooling in hands and arms (veins hurt so i have to keep my arms up), feeling as if i have to urinate but can't and exacerbation of asthma.

I do not always suffer from excessive urination but when i do it starts with muscle and joint pain, then within a few hours i lose 2kg in fluid, it seriously feels like all the moisture is being sucked out of the cells!
Anyone with a similar experience?

This has been going on for too long so i'm in the process of creating a list of tests to do.
I suspect it's a part of my dysautonomia, maybe something with the catecholamines going wrong.


I guess it can be a weird cfs symptom.

My understanding is it can be central insipidus which is from lack of hormone produed by the pituitary or nephrogenic which is from the kidneys them self.they say a lack of response from desmo can mean its nephrogenic ? ?

I think if it helps hydration more it may reduce headaches and tolerate summers better. But it would be nice to not have my bladder wake me in the middle of the night.
 

Richard7

Senior Member
Messages
772
Location
Australia
I did the 24 hour urine test back when I was 1st ill, my doctor thought that my symptoms looked like those suffered by spray painters working with cars and trucks, and he was worried about heavy metal poisoning.

I needed 4 of those 4.5ltr containers, I did not quite fill them but was at 80% or 90% I guess.

At the time a biochemist I spoke to said that this sort of volume of urine was common with people suffering from pain. He mentioned something about people in hospitals with migraine (I had chronic migraine) and after car accidents etc where they could measure the output accurately.

I cannot remember if he had a cause for the correlation.

I also saw one of dr Teitelbaum's videos where he considered it a normal CFS symptom just advising that we need to drink like horses if were urinating like them.

I know it varies but have not really measured it. I have been up for 8 hours so far today and have only consumed about 3.5 litres so far.

Oh, if 1.5 liters output is normal then I guess ... how can someone only drink 1.5 litres of water a day. And what about all of the water embodied in food. Do they just sweat a lot?

Maybe I have been so long in this new normal that I have forgotten what the old normal was like.
 

SOC

Senior Member
Messages
7,849
If your blood volume is low from DI, then you should get a reduction in some common ME symptoms with desmo. Worth a try. Can you get the doctor to check to see if your problem is aldosterone deficiency or vasopressin deficiency? I think either one can have you pissing excessively, but the appropriate medication is different.
 

heapsreal

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If your blood volume is low from DI, then you should get a reduction in some common ME symptoms with desmo. Worth a try. Can you get the doctor to check to see if your problem is aldosterone deficiency or vasopressin deficiency? I think either one can have you pissing excessively, but the appropriate medication is different.
Had aldosterone tested awhile back which was normal. My dr said it's an inaccurate test as it fluctuates a lot. I think being treated with desmopressin is also diagnostic in telling us if it's hormonal or structural issue in the kidneys. I have other hormones that are low, I think in many of us it's due to damage of the hpa axis from infections and inflammation.??
 

heapsreal

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I did the 24 hour urine test back when I was 1st ill, my doctor thought that my symptoms looked like those suffered by spray painters working with cars and trucks, and he was worried about heavy metal poisoning.

I needed 4 of those 4.5ltr containers, I did not quite fill them but was at 80% or 90% I guess.

At the time a biochemist I spoke to said that this sort of volume of urine was common with people suffering from pain. He mentioned something about people in hospitals with migraine (I had chronic migraine) and after car accidents etc where they could measure the output accurately.

I cannot remember if he had a cause for the correlation.

I also saw one of dr Teitelbaum's videos where he considered it a normal CFS symptom just advising that we need to drink like horses if were urinating like them.

I know it varies but have not really measured it. I have been up for 8 hours so far today and have only consumed about 3.5 litres so far.

Oh, if 1.5 liters output is normal then I guess ... how can someone only drink 1.5 litres of water a day. And what about all of the water embodied in food. Do they just sweat a lot?

Maybe I have been so long in this new normal that I have forgotten what the old normal was like.

Drink like a fish and piss like a race horse.

From what I have read as long as u still get an urge to drink, many can almost replace what they have lost, maybe why many have issues in summer. I think big problems happen with those that don't get thirsty.

I drink non stop and thought I was addicted to Pepsi max, probably am but for different reason then I initially thought. It's hard to drink gallons on water but easier to drink flavoured water etc which is probably the main reason behind all the Pepsi max I drink. If I stop drinking fluids for say 20mins, I become as dry as the Sahara , I drink something and soon after I'm at the can.

They say it's common to crave ice cold drinks, I have a glass I keep in the freezer and always have ice in my drinks. I think a lot of headaches are due to dehydration, more fluids don't fix it but have found quick relief with electrolyte drinks, as they also help shift the balance of fluids to stay in the body longer?

So 7.5ltrs from my 24hr collection. Had to be stored in the fridge, what a pain as a few times I walked straight to the can than realizing I had to walk out to the fridge for my 5ltr jug. It kept the kids away from the fridge for 24hrs too haha.
 

heapsreal

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@heapsreal Pepsimax - caffeine and sugar addictive? Have you tried other flavored drinks that don't have the caffeine and sugar, to see if there's an eventual difference?

No sugar in it but yes tried without many times for several months, just felt worse. Caffeine may have had a positive effect on orthostatic issues maybe. Caffeine content is equal to 1/4 cup of coffee .

Ive tried electrolyte drinks regularly but they probably arent safe either over a certain level.

Plain water just bloats me although i drink alot of it to alternated between my poison.

I will see how i go if i get prescribed desmopressin.

Never really measured fluid intake but its several litres of fluid easily . When u lose so much its hard to drink that much of one type of fluid to maintain fluid levels.
 

Richard7

Senior Member
Messages
772
Location
Australia
Interesting, I dont think I would have an issue drinking it all as water.

But I'm mostly drinking green tea.

I make it in a slightly unorthodox way making up a 2ltr teapot every evening and then bottling that tea and refrigerating it in the morning, when I of course make another pot of tea. I also drink 4 - 8 espressos made in a mocha pot, and black tea and water and beet kvass etc.

The caffeine seems pretty important, but when I don't have tea organised I just drink a lot of water.

but I am not really aware of needing to drink every 20 minutes, indeed I know that I go for hours without. I just tend to drink a lot when I do .

But I have been thinking about this overnight, and I wonder if the problem is just worse than it used to be.

Its hard to be sure but I do not think that there would have ever been a tim in the last 30yrs when I drank less than 3ltrs a day.

I can remember thinking it odd when people spoke of having trouble drinking the water needed to take pills or when people talked about it been healthy and hard to have 2 ltrs of water a day. (Nonsense, apparently it came from an estimate that people needed about a ml of water (from food or drink) per kilocalorie of food for the purpose of digestion)

If the cause is viral I wonder if this would fit into the two virus or virus plus injury idea of CFS. But maybe others are not drinking so much.

By the way heapsreal, I love the title of this thread.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I take a drink every few minutes, a small sip, then another some minutes later, when I have water to hand.

When I was in hospital I filled one of those jugs and I was told I was not a horse! I didn't have the heart to say I could have filled another one.

I think excessive urination is common. Many of us need to drink, and drink some more. This often comes with thirst and very dry mouth. If I do not regularly sip I get so thirsty I can down a whole liter in seconds, and then drink another more slowly. Sipping works better.

I find Coke Zero slightly better than Pepsi Max, but not by much. Soda water is good too. Fruit juice and soda water combined is sometimes good for a change. Mostly I rely on soda water if I have any to hand. However I buy six to eight bottles a fortnight, and it does not last the week, that in addition to Zero and coffee and boiled tap water.
 

heapsreal

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@heapsreal Have you had an ultrasound to see how big your bladder is? I've read reports that some people's bladder gets so big that they can't even see it on the ultrasound.


No i haven't . Hoping when i get on right med things will sort itself out. Then if bladder is big i might be able to go 3 days without peeing. Oppositeof a camel lol
 

heapsreal

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Not happy with my 24hr urine test. I have to do another, AARRGGHH pissed off pun intended haha.

Says elevated urinary creatinine excretion which indicates an over collection error. Whatever that means , so apparently makes other samples misleadingly high.

I dont understand how an error can occur unless they think i added the creatinine . Just a note i dont use creatine but im on a low carb high protein diet. So the sodium, potassium and chlorine supposedly high but misleading . Also previous blood tests ive never had an issue with sodium potassium or chloride.

Maybe whoever was testing my pee was eating his salty fish n chips at the same time.

Probably wait till after xmas now and keep my exercise up running to the dunny can. I was looking forward to not pissing all the time.
I am pissed off really Grrrrrrr
 

Richard7

Senior Member
Messages
772
Location
Australia
Were the sodium and potassium levels from the urine or the blood. If they are normal in your blood but high in your urine I do not see how that can be a problem.

And a high potassium diet is considered to be a good thing, and even people working from the conventional wisdom should not consider salt a problem if you are not retaining too high a level of it.
 

heapsreal

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Were the sodium and potassium levels from the urine or the blood. If they are normal in your blood but high in your urine I do not see how that can be a problem.

And a high potassium diet is considered to be a good thing, and even people working from the conventional wisdom should not consider salt a problem if you are not retaining too high a level of it.

Sodium and potassium were high in urine but previous tests, blood was normal. I think similar in that the body is doing its job removing excess .

I must be replacing what im missing. I would have thought the volume of urine needs to be fixed first and the other things may sort itself out.

Adrenal dysfunction i have read can be an issue. For along time now i have thought that many of us mecfsers have funky hormones , which i think may be related to the initial injury to the pituitary and hypothalmus , from infectious onset and probably ongoing infections . Also sleep is regulated by the pituitary and many other function such as weee.

I think this damage and dysfunction to the hpa axis is what contributes to many of our symptoms.