my weee test, pots/oi

[SOC]

i have woken up morning bp 114/73 pulse 68. My understanding is that its autonomic dysfunction. I have been reading that when someone with diabetes insipidus starts treatment with desmopressin that these things stabilize?? I suppose as they day goes on and i remain upright my body is trying to compensate for the low blood volume, the high pulse rate to me indicates that im probably having an adrenergic response that pushed my bp up??

20hrs down and 6 litres passed, so this seems consistent with diabetes insipidus. I guess one doesnt realise how much they pass until they start measuring it as well??

My HR and BP both came down with the combination of extra electrolyte fluids, Florinef, and verapamil (for tachycardia -- I can't take beta blockers because I have asthma). I was told the raised BP and tachy were likely compensation for low blood volume.

It certainly sounds like you should be checked for diabetes insipidus. Even if it is DI, desmopressin only works in some forms, so you'll need to have some lab tests to sort out what kind you have.

Let's hope you've found a treatable cause for some of your symptoms. Every little bit helps in the quest for improved quality of life.

 

[heapsreal]

Test is over 9.5 ltires in 24hours.
I think i see the problem??

If others think they pee alot it might be worth measuring 24hr urine output?? Possibly apart of the neurological aspects of cfs/me with dysfunction to the HPA axis causing this issue??

 

[Sea]

Definitely a problem! It's probably worth repeating while measuring input as well before you take your results to the doctor

 

[maddietod]

The 3 times I've measured output it's been 2L, 2.2L, and 1.5L. So, yeah.......pretty high, heaps!

 

[August59]

Test is over 9.5 ltires in 24hours.
I think i see the problem??

If others think they pee alot it might be worth measuring 24hr urine output?? Possibly apart of the neurological aspects of cfs/me with dysfunction to the HPA axis causing this issue??

Hell Yes that's a lot. I'm lucky if I get 1.5 liters until Type 2 diabetes showed up. Then it went up to 3 to 4 liters every 24 hours.

 

[heapsreal]

i think just reduce the amount of miles i do just going to the toilet will help.

Its probably the last couple of months that i have seen bp and pulse rate changes. my bp did rise when i had sinus infections but otherwise 130/80 with pulse in the 70s at rest, so things are going whacky.

As i think about it, probably started when i stopped valcyte and had a mini relapse, i have also put weight on with no change in diet even though im peeing my brains out. I think it shows how cfs can muck up our metabolism. as my cfs/me progresses im finding my hormones dropping off. So im slowly adding them back in and increasing the doses of the ones i need to keep me within a healthy range.

cfs/me has a neurological aspect with many having damage to the hypothalamus and pituatory gland that controls many hormones and other bodily functions like sleep. googling their functions u can see how autonomic dysfunctions occurr causing pots/oi, as well as diabetes and decreased insulin sensitivity, diabetes insipidus, digestion and many other functions which i thinks helps explains our wide and varied amount of symptoms.

 

[maryb]

heapsreal
our weeeeee hero!!!
as I too output a vast amount of dilute urine was very interested in this. However is seems that one way to test for this would be to reduce your fluid intake vastly - if your output is still very dilute possible it could be DI, if its strong coloured then less unlikely. Mine does go a lot darker on the days I have reduced intake for whatever reason.
Very interesting though.
Like SOC I'm not happy about your BP and Hr - too high and fast - need to get that checked out regardless.

 

[SOC]

cfs/me has a neurological aspect with many having damage to the hypothalamus and pituatory gland that controls many hormones and other bodily functions like sleep. googling their functions u can see how autonomic dysfunctions occurr causing pots/oi, as well as diabetes and decreased insulin sensitivity, diabetes insipidus, digestion and many other functions which i thinks helps explains our wide and varied amount of symptoms.

Yeah, I wonder why there isn't more concern about problems with our hypothalamus and it's friends. Given our symptoms, wouldn't they be the most likely targets for autoimmunity in ME/CFS? Is it too hard to detect directly problems with these glands? Clearly our hormone signaling is a mess, but endocrinologists don't seem particularly interested in us.

**sigh** Another one of those areas of medicine where I know next to nothing, but probably need to know more than I should have to.

 

[alex3619]

When I was in hospital and filled a pee bottle in one go, I was asked by one nurse if I was a horse! I think this issue is common.

I always feel thirsty though. So I drink a lot. In particular I take a sip every so many minutes to keep my throat moist, as otherwise it can get very dry.

 

[SOC]

I always feel thirsty though. So I drink a lot. In particular I take a sip every so many minutes to keep my throat moist, as otherwise it can get very dry.

Me, too. Always thirsty and always drinking -- water, that is. Ice water is best.

I haven't tried the pee in a jug thing, yet. Frankly, it's not as easy for us ladies as it is for you fellows so it would take a lot more motivation than I have for it atm.

 

[Sea]

Me, too. Always thirsty and always drinking -- water, that is. Ice water is best.

I haven't tried the pee in a jug thing, yet. Frankly, it's not as easy for us ladies as it is for you fellows so it would take a lot more motivation than I have for it atm.

It's pretty easy with a toilet insert (like a potty with a pouring spout). I was given one from pathology when I had to do a 24 hour collection.

 

[SOC]

It's pretty easy with a toilet insert (like a potty with a pouring spout). I was given one from pathology when I had to do a 24 hour collection.

True enough. If my doc wanted me to do this, I'd want some suitable equipment but I'd be fine doing it. Well, sorta.

I was thinking more about the type of casual experimentation heaps tried just to see if DI might be an issue for him. I'm not going there without a clear medical purpose and the proper equipment. Peeing in a cup today for my routine labs reminded me just how much I don't want to go there.

 

[heapsreal]

heapsreal
our weeeeee hero!!!
as I too output a vast amount of dilute urine was very interested in this. However is seems that one way to test for this would be to reduce your fluid intake vastly - if your output is still very dilute possible it could be DI, if its strong coloured then less unlikely. Mine does go a lot darker on the days I have reduced intake for whatever reason.
Very interesting though.
Like SOC I'm not happy about your BP and Hr - too high and fast - need to get that checked out regardless.

very diluted each collection.
I have managed to sneak in and see my doc in a week and a half which is hard to get appointments that soon but anyway, i think with my bp i dont think its straight forward to take a bp med as it would drop it too low in the mornings. Im thinking its(pulse rate and high bp) a protective response to low blood volume, so maybe if im prescribed desmopressin this will reduce output and maintain normal hydration and vital signs will stabilize.
I will see in a week and a bit i guess

 

[maddietod]

Me, too. Always thirsty and always drinking -- water, that is. Ice water is best.

I haven't tried the pee in a jug thing, yet. Frankly, it's not as easy for us ladies as it is for you fellows so it would take a lot more motivation than I have for it atm.

Wide mouth mason jar. The lid screws on nice and tight, and it's already marked in mls.

 

[SOC]

Wide mouth mason jar. The lid screws on nice and tight, and it's already marked in mls.

There's a good idea. Wonderfully handy things, those wide mouth mason jars.

 

[Sushi]

I think Rich used to say that if we peed out over 2 1/2 or 3 liters a day (course how much you are drinking is a big factor), you ought to consider whether you had DI.

For some awful test I had to do a 24 hour urine and I was way over 3 liters. The interesting thing is, the DI seems to have resolved. No longer getting up several times during the night, no longer having to drink constantly (though I make sure I take in at least 2 liters).

So, for me, the good news is that DI can resolve by treating other issues and not having to take some version of vasopressin.

Sushi

 

[Sea]

My 24 hour collection was 3 litres but it wasn't a reliable picture so I want to do it again. The collection I took for some test wasn't actually looking at volume and the 24 hour period included a glucose tolerance test where my intake was severely restricted for I don't remember how many hours.

 

[heapsreal]

i just had a 1 litre bottle and everytime i filled it i emptied it out, i put a notch on a piece of paper to remember where i was at as the cfs brain wont remember. So no need to keep the whole 24hrs worth plus i would need a big steel drum to collect all mine,
I think fluids we take in is important up to a point but if over the 3 litres output and just drinking when u have the urge then theres an issue going on?? The more that comes out the more one is going to want to drink. For me at a guess i would say my input is close to my output otherwise i think i would have hypotensive pots not hypertensive pots/oi.

 

[heapsreal]

Im glad others are thinking of trying this, it would be interesting to see others results.
9.5ltrs is the mark to beat, not that its a pissing contest

 

[SOC]

i just had a 1 litre bottle and everytime i filled it i emptied it out, i put a notch on a piece of paper to remember where i was at as the cfs brain wont remember. So no need to keep the whole 24hrs worth plus i would need a big steel drum to collect all mine,
I think fluids we take in is important up to a point but if over the 3 litres output and just drinking when u have the urge then theres an issue going on?? The more that comes out the more one is going to want to drink. For me at a guess i would say my input is close to my output otherwise i think i would have hypotensive pots not hypertensive pots/oi.

You can have low blood volume and dehydration and hypertensive pots/oi (raises hand).

Im glad others are thinking of trying this, it would be interesting to see others results.
9.5ltrs is the mark to beat, not that its a pissing contest

Well, why the heck not? It might be educational.