Polyuria, Nocturia and Polydipsia--ME symptoms?

[BadBadBear]

I have nocturia - right now it's fairly calmed down and I only go once or twice at night, but typically it's large volume - I lose 5# overnight sometimes. I have been tested for Addisons & diabetes insipidus (both negative). I have lots of trouble with electrolyte balance & have severe orthostatic hypotension at times. The ONLY supplement that has made a big difference is alpha lipoic acid. I have no idea why, but sometimes when I am taking that I don't even wake up once to go. Florinef did not make a difference, heavy salt loading does not help. I have been using mB12 for 16 months now and it does not seem to make a difference. I think ALA may help sugar get into my cells rather than being urinated out and that reduces nocturia. I am not diabetic, but I will occasionally have a fasting sugar in the mid 90's. I also was having a lot of problems with adrenaline release at 4 a.m. w/ glycogenesis - I tend to think it's all related in my case. In any event, it's all improved with ALA (which I am off of for now on a sulfur exclusion test diet).

 

[CFS_for_19_years]

I have nocturia - right now it's fairly calmed down and I only go once or twice at night, but typically it's large volume - I lose 5# overnight sometimes. I have been tested for Addisons & diabetes insipidus (both negative). I have lots of trouble with electrolyte balance & have severe orthostatic hypotension at times. The ONLY supplement that has made a big difference is alpha lipoic acid. I have no idea why, but sometimes when I am taking that I don't even wake up once to go. Florinef did not make a difference, heavy salt loading does not help. I have been using mB12 for 16 months now and it does not seem to make a difference. I think ALA may help sugar get into my cells rather than being urinated out and that reduces nocturia. I am not diabetic, but I will occasionally have a fasting sugar in the mid 90's. I also was having a lot of problems with adrenaline release at 4 a.m. w/ glycogenesis - I tend to think it's all related in my case. In any event, it's all improved with ALA (which I am off of for now on a sulfur exclusion test diet).

Sometimes a lot of fluid stays in the lower part of our body during the day, simply due to gravity. When we lie down at night there is improved blood flow to the kidneys because the fluid is freed from the effects of gravity and they do a much better job of getting rid of the excess fluid then, so our bladders fill up.

My GFR (glomerular filtration rate) runs around 65, so while I don't have kidney disease, there is some slight insufficiency for someone my age. I have found that I can head off the night-time fluid expulsion nightmare by lying down flat several hours before bedtime and let my bladder fill up while I'm awake. It only takes about 90 minutes for me a feel the urge to go and that's at least one pound of fluid I'm not taking to bed with me.

This won't cure whatever is causing you to lose 5# at night, but it may help manage your symptoms.

 

[BadBadBear]

Thanks - I will have to pay attention and notice if I do better on the evenings I am sitting in the recliner before bed. Problem is, I also have a lot of thirst so if I am just sitting, I tend to sip on my beverage more than if I'm sitting up typing (sipping on salty lime-aide at the moment).

 

[CFS_for_19_years]

Thanks - I will have to pay attention and notice if I do better on the evenings I am sitting in the recliner before bed. Problem is, I also have a lot of thirst so if I am just sitting, I tend to sip on my beverage more than if I'm sitting up typing (sipping on salty lime-aide at the moment).

It's best if you can get your body as flat as possible, with the feet slightly elevated above your heart if you can manage it. That gives the path of least resistance to all that fluid.

If you happen to have fibromyalgia, you may benefit from spironolactone, a diuretic that's been around since the 1950's. It does make you pee a bit more during the day. It got rid of my salt cravings and I also feel less thirsty. I've also reduced my pain med dosages by one-half. I noticed the pain-reducing effects within days. Here's the article that I took to my doctor:

http://www.scandinavianjournalpain.com/article/S1877-8860(14)00006-8/abstract

Here's a fun photo:

 

[stridor]

You may have thought about this but ALA is the chelator used with the Cutler Protocol for mercury. A decrease in nocturia is a common finding amongst Cutler-ites.
A harmless test for your theory would be a script for metformin. Sounds like it wouldn't be counterindicated for you anyway with the way your sugars run. It increases cell sensitivity to insulin and allows more glucose into the cells. See if it decreases nocturia or not.

 

[MeSci]

I have nocturia - right now it's fairly calmed down and I only go once or twice at night, but typically it's large volume - I lose 5# overnight sometimes. I have been tested for Addisons & diabetes insipidus (both negative). I have lots of trouble with electrolyte balance & have severe orthostatic hypotension at times. The ONLY supplement that has made a big difference is alpha lipoic acid. I have no idea why, but sometimes when I am taking that I don't even wake up once to go. Florinef did not make a difference, heavy salt loading does not help. I have been using mB12 for 16 months now and it does not seem to make a difference. I think ALA may help sugar get into my cells rather than being urinated out and that reduces nocturia. I am not diabetic, but I will occasionally have a fasting sugar in the mid 90's. I also was having a lot of problems with adrenaline release at 4 a.m. w/ glycogenesis - I tend to think it's all related in my case. In any event, it's all improved with ALA (which I am off of for now on a sulfur exclusion test diet).

I've been taking ALA for over a year and it hasn't affected my polyuria or nocturia. But then I have hypertension and good blood sugar control.

What does the symbol '#' mean in '5#'?

 

[Leopardtail]

I have nocturia - right now it's fairly calmed down and I only go once or twice at night, but typically it's large volume - I lose 5# overnight sometimes. I have been tested for Addisons & diabetes insipidus (both negative). I have lots of trouble with electrolyte balance & have severe orthostatic hypotension at times. The ONLY supplement that has made a big difference is alpha lipoic acid. I have no idea why, but sometimes when I am taking that I don't even wake up once to go. Florinef did not make a difference, heavy salt loading does not help. I have been using mB12 for 16 months now and it does not seem to make a difference. I think ALA may help sugar get into my cells rather than being urinated out and that reduces nocturia. I am not diabetic, but I will occasionally have a fasting sugar in the mid 90's. I also was having a lot of problems with adrenaline release at 4 a.m. w/ glycogenesis - I tend to think it's all related in my case. In any event, it's all improved with ALA (which I am off of for now on a sulfur exclusion test diet).

Blood sugars raising will both cause polyuria and fatigue. Alpha lipoic acid is thought by some to help with insulin resistance (though its controversial). I definitely suffered insulin resistance when my ME was more severe (I was able to verify it).
This is all very theoretical, but here are some things you could try:

• reduce the amount of carbohydrate you take before bed (nothing after 18:30) to ensure you have flushed any excess sugar in your system
• consider asking your doctor to check circulating Insulin levels as well as your blood sugar.
• If you are not corn allergic try taking ribose (first time do so after food) - I found this worked wonders for my insulin resistance.
• Carnosine is thought by some to help reduce the damage done by high blood sugar, and KDM uses it to heal bowel issues in CFS, that may be worth a try (can't tell you doses). KDM used Zinc Carnosine that kills two birds with one stone, but its expensive.
  
• Deficiency in Zinc and/or Magnesium can cause Insulin resistance (and if you pancreas is fatigued high blood sugar).
• Finally ALCAR and CoQ10 may help.

Check all the medications you are taking for polyyuria as a side effect - I had awful trouble with some meds and urination.
One final thought: some oxidised amino acids can cause excessive urination (e.g. Cystine) - if the above don't work think about your anti-oxidants status, you may need to take a good variety of them (e.g. ALCAR + Vitamin C + Vitamin E + Vitamin A + CoQ10 + ALA) for a while to get your system back to proper status.

hope that helps,

Leo

 

[CFS_for_19_years]

• Carnosine is thought by some to help reduce the damage done by high blood sugar, and KDM uses it to heal bowel issues in CFS, that may be worth a try (can't tell you doses). KDM used Zinc Carnosine that kills two birds with one stone, but its expensive.

hope that helps,

Leo

L-Carnosine and Zinc L-Carnosine are two entirely different products.

I take 1000mg of Carnosine all at once in the morning 30 - 60 minutes before meals. It is an antioxidant and a free radical scavenger. It's helpful in treating diabetes. Here's a bottle:
http://www.amazon.com/Foods-L-carnosine-500mg-Vegetarian-Capsules/dp/B0013OSND8

Zinc L-Carnosine has a very small amount of carnosine in it (30mg) and does the following:

• Promotes a healthy stomach lining and environment
• Helps relieve occasional gastric discomfort & maintains a healthy GI environment

Here's a bottle: www.amazon.com/Doctors-Best-PepZin-Veggie-120-Count/dp/B0035BYOSA

I take Zinc L-Carnsosine twice a day.

 

[Leopardtail]

L-Carnosine and Zinc L-Carnosine are two entirely different products.

I take 1000mg of Carnosine all at once in the morning 30 - 60 minutes before meals. It is an antioxidant and a free radical scavenger. It's helpful in treating diabetes. Here's a bottle:
http://www.amazon.com/Foods-L-carnosine-500mg-Vegetarian-Capsules/dp/B0013OSND8

Zinc L-Carnosine has a very small amount of carnosine in it (30mg) and does the following:

• Promotes a healthy stomach lining and environment
• Helps relieve occasional gastric discomfort & maintains a healthy GI environment

Here's a bottle: www.amazon.com/Doctors-Best-PepZin-Veggie-120-Count/dp/B0035BYOSA

Yes, I am aware of the differences. Carnosine does not so much treat diabetes as lower glycosylation of protein (meaning high BMs do a little less damage but also making HBA1c a less useful evaluation). The issue with the HBA1c can confuse researchers and produce false conclusions about the diabetes itself.

The Zinc (if deficient) actually improves insulin performance in situations that mimic T2DM. The proven most effective thing for insulin resistance and ME is Ribose however (so much so it can cause hypoglycaemia on first use). Not everybody can tolerate ribose though, so I gave a few options.

 

[Leopardtail]

L-Carnosine and Zinc L-Carnosine are two entirely different products.

I take 1000mg of Carnosine all at once in the morning 30 - 60 minutes before meals. It is an antioxidant and a free radical scavenger. It's helpful in treating diabetes. Here's a bottle:
http://www.amazon.com/Foods-L-carnosine-500mg-Vegetarian-Capsules/dp/B0013OSND8

Zinc L-Carnosine has a very small amount of carnosine in it (30mg) and does the following:

• Promotes a healthy stomach lining and environment
• Helps relieve occasional gastric discomfort & maintains a healthy GI environment

Here's a bottle: www.amazon.com/Doctors-Best-PepZin-Veggie-120-Count/dp/B0035BYOSA

Any particular reason you take it in one dose and mornings?

 

[CFS_for_19_years]

Any particular reason you take it in one dose and mornings?

I read one or more Life Extension protocols that said it was best to take it all at once. Here's a quote from one of their protocols:

The reason for this is that the body automatically metabolizes lower amounts of carnosine into an inert substance, but the body cannot neutralize the amount of carnosine (1000 mg) contained in six capsules of ChronoForte

I also have Life Extension's big book of protocols so I may have read it there.

Most amino acids are best taken on an empty stomach and the only time my stomach is empty is in the morning.

You indicated to me that you didn't want to derail this thread and change topics, so if you'd like to continue a discussion regarding carnosine and its various forms, we can continue a private conversation.

 

[BadBadBear]

@CFS, I totally get that cat. LOL

@stridor, thanks for mentioning this about Cutler. I have only read the basics, and was not aware that ALA has the affect of reducing nocturia fairly commonly. I thought about trying metformin, but will probably just go back on ALA after my amalgams are out. ALA does drop my fasting sugars by 5-10 points - I end up in the high 70's and low 80's. I am actually not sure if I could tolerate Cutler's full protocol or not - would just have to see if hypoglycemia was an issue?

@MeSci, # just means pounds. I lose about 5 pounds of weight at night from polyuria, especially when I'm eating lower carb. Along the lines of what CFS said, I've read that being prone at night increases blood flow to the kidneys and in my case, my BP is usually better when I'm prone - and that may increase circulation & hence nocturia.

@Leopard, I think I have not checked circulating insulin levels yet, that would be interesting to test. Thx for the ideas about reducing nocturia. I did not realize D-Ribose would help w/ insulin resistance, I'll have to give it another go in my resistant starch drinks. I actually usually have better blood sugars if I have a small snack before bed. It seems to help my body not go so nuts making sugar at 4 a.m. I need to wake up at 2 some morning to check my blood sugar level and see if I'm possibly going hypoglycemic at night.

 

[Leopardtail]

@CFS, I totally get that cat. LOL

@stridor, thanks for mentioning this about Cutler. I have only read the basics, and was not aware that ALA has the affect of reducing nocturia fairly commonly. I thought about trying metformin, but will probably just go back on ALA after my amalgams are out. ALA does drop my fasting sugars by 5-10 points - I end up in the high 70's and low 80's. I am actually not sure if I could tolerate Cutler's full protocol or not - would just have to see if hypoglycemia was an issue?

@MeSci, # just means pounds. I lose about 5 pounds of weight at night from polyuria, especially when I'm eating lower carb. Along the lines of what CFS said, I've read that being prone at night increases blood flow to the kidneys and in my case, my BP is usually better when I'm prone - and that may increase circulation & hence nocturia.

@Leopard, I think I have not checked circulating insulin levels yet, that would be interesting to test. Thx for the ideas about reducing nocturia. I did not realize D-Ribose would help w/ insulin resistance, I'll have to give it another go in my resistant starch drinks. I actually usually have better blood sugars if I have a small snack before bed. It seems to help my body not go so nuts making sugar at 4 a.m. I need to wake up at 2 some morning to check my blood sugar level and see if I'm possibly going hypoglycemic at night.

Then I would try the ribose morning and/or lunchtime - I have a 'crackpot theory' in my head re the way your body may be handling insulin metabolism. Am I right in thinking you got to bed @circa 10pm (ie hypo a few hours after going to sleep?)

 

[MeSci]

If you are not corn allergic try taking ribose (first time do so after food) - I found this worked wonders for my insulin resistance.

I would urge extreme caution about taking d-ribose - it has very nasty effects on some of us, such as myself. I am not allergic to corn.

 

[Leopardtail]

Advising 'Extreme Caution' really is overstating the case. At least two studies have shown significant improvement in 80% or more of participants. Myhill indicates that less than 10% of patients react negatively and still trials it unless she suspects marked dysbiosis.

From a scientific point of view it's very expensive metabolically for the body to produce. It's a component of ATP and of of the active form of multiple B Vitamins. Under the best circumstances it is slow to produce and requires excess glucose within the cell - this is highly unlikely in many ME patients.

Even among those who have an initial negative reaction the two most common reasons are transient hypoglycaemia caused by sudden improvement in Insulin action and sudden marked improvement in immunity causing Herxheimer reactions.

I realise that you personally suffered a marked reaction and concluded it was 'not for you' but I have never experienced a reaction that was not one of the two 'healing shocks' mentioned above or very temporary across a very large number of people. This experience backs up the research findings.

Every medication / supplement produces a very negative reaction in some people however we cannot advise 'extreme caution' for everybody and every medication. Bacterial aka 'human' insulins for example produce severe allergic reactions in some, for me Zinc based insulins produced pain, bovine were unstable. Frightening people out of often very positive measures does not seem 'measured'.

 

[MeSci]

Advising 'Extreme Caution' really is overstating the case. At least two studies have shown significant improvement in 80% or more of participants. Myhill indicates that less than 10% of patients react negatively and still trials it unless she suspects marked dysbiosis.

From a scientific point of view it's very expensive metabolically for the body to produce. It's a component of ATP and of of the active form of multiple B Vitamins. Under the best circumstances it is slow to produce and requires excess glucose within the cell - this is highly unlikely in many ME patients.

Even among those who have an initial negative reaction the two most common reasons are transient hypoglycaemia caused by sudden improvement in Insulin action and sudden marked improvement in immunity causing Herxheimer reactions.

I realise that you personally suffered a marked reaction and concluded it was 'not for you' but I have never experienced a reaction that was not one of the two 'healing shocks' mentioned above or very temporary across a very large number of people. This experience backs up the research findings.

Every medication / supplement produces a very negative reaction in some people however we cannot advise 'extreme caution' for everybody and every medication. Bacterial aka 'human' insulins for example produce severe allergic reactions in some, for me Zinc based insulins produced pain, bovine were unstable. Frightening people out of often very positive measures does not seem 'measured'.

Repeated info from another thread:

from Erica Verrillo's e-book:

"Dr. Cheney has observed that fully one-third of his patients cannot tolerate D-Ribose. To test for sensitivities, an initial small dose (1 to 2 grams a day) is recommended. PROS. D-Ribose appears to be generally well tolerated by people with CFS/ ME. Patients usually notice improvement in energy levels within two or three days, although one patient commented that “within an hour, it was like a super thick fog bank had dissipated.” D-Ribose works particularly well with brain fog, daytime sleepiness and hypersomnia. CONS. Some patients report that D-Ribose makes them sleepy, and that it saps them of energy. Those who take high doses (15 grams a day) have reported diarrhea, nausea, and headache."

Verrillo, Erica (2012-09-14). Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition (Kindle Locations 12956-12962). Erica Verrillo. Kindle Edition.

I could not tolerate it. I didn't feel tired, but like there was a war going on inside me. Most unpleasant. A friend with ME said that he felt close to disembowelling himself with a kitchen knife when he tried d-ribose.

From a quick search of my computer I also find that it brought back the dermatitis on my palms, which I had got rid of with my leaky-gut diet and supplements. A friend said that she developed thrush after taking it. I also find that I said in an email to her "it looks as if it has undone all my work alkalinising my gut due to being a sugar...I am really fed up as I think I am back to square 1 after making such progress gut-wise, and have just started another course of grapefruit seed extract while I try to restore the good balance of gut bacteria."

I don't think that an increase in energy is a good thing for us in the short term. I think that we need to fix the underlying pathology and be patient as other symptoms improve first.

I believed from the start of my (science-based) leaky-gut diet and supplements that it was going to be a long process, having been ill for so long. I expected energy to be one of the last things to recover, again based on science.

I believe that boosting energy in the early stages of treatment could prevent us from getting the rest we need, and that it may be necessary to tolerate a reduction in energy to start with, enabling us to get the rest that we should have got in the early stages of illness.

I believe that boosting energy in the short term is like the modern practice of 'sticking-plaster solutions' that is so common in official healthcare systems.

Please feel free to disagree with me, but I believe that people need to, and are entitled to, know about potential hazards. This is not being alarmist.

 

[sming]

BTW meds can increase nocturia too, for example when I was on Nardil I was peeing every hour through the night. Can't find any studies to this effect but it started and stopped in sync with my starting/stopping Nardil. BTW now (completely off Nardil) it's 3-5 times.

Just one of Nardil's many interesting side effects...

 

[BadBadBear]

Fortunately, I tolerate D-Ribose just fine. I haven't noticed much effect from it previously, but now that I'm on T3 it's worth re-trying as my body does respond to things in a different way. Besides, I have a tub of it that needs used up.

I added a half dose of D-Ribose to my kefir+resistant starch last night, and did not have reduced nocturia, but today I will only consume it earlier in the day. I put it in my breakfast, I think I will check my blood glucose at an hour post prandial to see if it has any negative effect of it.

And yes @ Leopard, I go to sleep around 9:30 or 10:00. What is your crackpot theory? Those are always my favorite kind of theories anyway.

 

[Leopardtail]

Repeated info from another thread:



I could not tolerate it. I didn't feel tired, but like there was a war going on inside me. Most unpleasant. A friend with ME said that he felt close to disembowelling himself with a kitchen knife when he tried d-ribose.

From a quick search of my computer I also find that it brought back the dermatitis on my palms, which I had got rid of with my leaky-gut diet and supplements. A friend said that she developed thrush after taking it. I also find that I said in an email to her "it looks as if it has undone all my work alkalinising my gut due to being a sugar...I am really fed up as I think I am back to square 1 after making such progress gut-wise, and have just started another course of grapefruit seed extract while I try to restore the good balance of gut bacteria."

I don't think that an increase in energy is a good thing for us in the short term. I think that we need to fix the underlying pathology and be patient as other symptoms improve first.

I believed from the start of my (science-based) leaky-gut diet and supplements that it was going to be a long process, having been ill for so long. I expected energy to be one of the last things to recover, again based on science.

I believe that boosting energy in the early stages of treatment could prevent us from getting the rest we need, and that it may be necessary to tolerate a reduction in energy to start with, enabling us to get the rest that we should have got in the early stages of illness.

I believe that boosting energy in the short term is like the modern practice of 'sticking-plaster solutions' that is so common in official healthcare systems.

Please feel free to disagree with me, but I believe that people need to, and are entitled to, know about potential hazards. This is not being alarmist.

Such negative reactions as I have seen have been in a subset of patients for whom dysbiosis is a known issue. It's very clear from the the KDM study that it deals with a particular subset of ME patients as such it is 30% of a subset, not 30% of the general ME population.

Had you offered the opinion to 'start cautiously with 1 or 2 g and watch for symptoms X, Y & Z - then I would have found the statement less alarming. That 30% figure is though very exceptional both in other research an in patient surveys.

My criticism was not the idea that a little caution would be wise, but that strength of the statement - it would have frightened me off what is often a very beneficial measure had I not already seen science or had positive experience. It's is also possible to absorb Ribose sub-lingually (if the dose are kept very small) since it's a glucose derivative.

I have tried to get a better idea of the symptoms you suffered, when and in what pattern in order to work out if I do need to moderate or adjust any information I give here - with a proper and full understanding of what happened I remained prepared to do so, (as per the adjustment for corn allergies). I am aware however that I suffered both a hypoglycaemic reaction and also suffered a Herx reaction when my immune system woke up from it's long sleep. Neither were pleasant. The symptoms POST-hypoglyceamia are seldom discussed in medical textbooks since they are not considered diagnostically necessary however they can be nasty and painful due to build up of acidic by-products. They can only be mitigated if people consider small amount of carbs at the start of mito supplements). Herx reactions cannot be avoided if one is to heal from any form of dysbiosis. Bear in mind too that the bowels produce severe pain in a variety of recovery scenrios (e.g. griping pains form restoration of healthy fibre) - just as I try to be aware of the comparatively small number of people who react badly.

The survey pointed to by Hip indicated that negative reactions to Ribose were no more prevalent than for CoQ10 with very few marked reactions.

So far as the energy v. rest issue is concerned that is hellishly complex and more a coffee table debate than something to do in email. If you can't bear that in the short term (for me the fatigue was much worse - I decided to live with the discomfort) - I can see an argument for upward titration and morning weighting.

 

[Leopardtail]

Fortunately, I tolerate D-Ribose just fine. I haven't noticed much effect from it previously, but now that I'm on T3 it's worth re-trying as my body does respond to things in a different way. Besides, I have a tub of it that needs used up.

I added a half dose of D-Ribose to my kefir+resistant starch last night, and did not have reduced nocturia, but today I will only consume it earlier in the day. I put it in my breakfast, I think I will check my blood glucose at an hour post prandial to see if it has any negative effect of it.

And yes @ Leopard, I go to sleep around 9:30 or 10:00. What is your crackpot theory? Those are always my favorite kind of theories anyway.

I found something similar occurred when I lifted from very-severe to just severe fatigue. I am diabetic as well as having ME for which reason I kept a very close eye on blood sugars. My 'gut hunch' aka 'crackpot theory' revolves around insulin resistance that occurs with ATP depletion. My thinking was that when my mitochondria were getting a rest and causing ATP to build back up and insulin to work correctly again a few hours after going to sleep. That meant that the high insulin levels needed to compensate for resistance became excessive once the resistance was no longer there. Result, hypo and lots of adrenalin etc waking me up. For that reason I found the need to take a small amounts of cabs at night, while things settled down.

I also found funnily enough that Ribose helped me sleep rather than worsening it, much more I found that if I took herbals teas (e.g. Valerian) for sleep with ribose they worked much much better. I also found that the 'wide awake' effect of Ribose disappeared with 'front loading' - meaning taking much more (15g at the start) to avoid an ATP roller-coaster. Perhaps how people react to that one depends on levels of fatigue?

The post-prandial check is definitely a good idea if you are taking limited carbs, it will allow you to head off any hypoglycaemia - I expected that having seen it in research so was 'ready for it'. BTW my overall insulin dose halved post Ribose.