Chronic health problem (Dehydration) - Faint hope somebody here might have some ideas

[Kaur Singh]

thank you -

and your sodium levels skew towards the lower side of the range?

 

[Callmestar]

thank you -

and your sodium levels skew towards the lower side of the range?

No, sodium is typically towards the higher end of the range. Creatinine is always highish. Both probably indicative of dehydration.

 

[Callmestar]

The more time goes on the more I'm convinced this is POTS and ME/Chronic fatigue. Some sort of Autonomic nervous system dysfunction. It matches just about all of my symptoms.

 

[Kaur Singh]

Ping Pong!
This is wonderful

I would recommend at this point that you pay ZERO attention to the mainstream narrative about ME/CFS
Toby Morrison has a lot of testimonial interviews of people who recovered on you tube.
Sure he has a business to run - they definitely serve the purpose of bringing hope,
like the rat that escaped and inspired the others to keep trying.

From what I remember, your constant need to urinate gets worse when you are in supine and worse at night.
+ Do you notice difference between the seasons too?

My case was the opposite - whenever I came to being upright, the peeing would start.
Interestingly, my labs also seem mirror image of yours - highish on your, lowish on mine and vice versa.
I tried a thyroid glandular supplement (not standardized) and this was the most immediate effect it had on me:
the constant peeing lessened, the color changed too.
I also stopped loosing minerals to sweat (my clothing had caked white powder on it wherever there was sweat).

I read on the other thread you have tried cynoplus - have you tried the whole gland? Even if just a short course of it.

This summer, I experienced a Very Stressful Event
I was waking up every hour or so at night to pee.
It makes me think that your body is experiencing a lot of stress.
With ME/CFS, this... threshold for stress is a lot lower.
Like you know, walking up the stairs can do it.

There are different things that can get you out of the stress response ,
this seems to be a bit individual, depending on where your body is at now,
how it responds to things - and it's for you to try.
Small dose of cyproheptadine was what finally helped me to come out of it.
Sunning in the morning, before UV index is high, also had a good effect on the constant night peeing.
I suppose red light may work too.

I like reading/listening to Ray Peat's work
It gives me a framework from which to understand what my body is doing
and how to go on about helping it regain order and health.
I learn from others experiences too, or they spur new ideas, etc.
I don't need permission to try something -
I judge for myself whether something is worth trying or not,
whether it seems like it may help me or not.
And I let my body's response guide me.
And blood tests - though I use them a little different than the doctor may.
I'm still sick, still figuring it out, much better than before.

Pacing is a pillar of recovery.
It doesn't matter all the nutrition/supplements/hormones
If you go over your energy envelope, you are going to set off the stress response
and your cells will lose their structure and and and....

Toby has enough free content for how to pace etc.
Some of his recommendations align with Peat's
(nutrition, sunlight, sleep, enriched environment)

https://www.youtube.com/c/CFSHealth/videos

In other posts, you wrote for example that certain foods, you felt a slight improvement with them
and others made you worse.
Go with what works!
you can revisit things that didn't (and should) later on, your body may be responding differently.
Are you consuming gelatin daily (home made probably best, bone broth, etc)?
We all seem to need the same things, the order they are introduced, or the quantity is where it may be different.

I wonder about kidney glandular - someone mentioned it on this post.
Kidney and brain? at the beginning, to help things going
(peptides, hormones, enzymes, vitamins, minerals - whatever, they are chockfull of them)

If you start something slow and low (dose),
if it produces an adverse effect, at least it will be less in intensity than a 'full' dose.
Also, standard dose doesn't exist, that's some stupid guideline.
The minimum amount that will produce effects - sometimes it is so small you would be surprised,
sometimes a temporary higher dose etc.
Which - I wondered, if you don't feel much from thyroid, if you might need a higher dose?
(Read Peat to understand how to properly do thyroid, how to increase dose, time frame, etc)
There's also this:

High circulating free fatty acids may also interfere with things. B3 and aspirin may help there, etc.
When you read Peat, you will understand all this.

Godspeed!

 

[Kayaker]

@Callmestar Did you ask Peat why you (or one of several people on here) lose water? I read it's due to low CO2 production, but I don't recall Peat himself has ever written about this apparently common problem.

Also, do you experience any symptoms if you eat a large amount of calcium at once (like cheese, or eggshell dissolved in a small amount of OJ), especially while dehydrated?

@Kaur Singh UV rays are also needed by the body. If there's sunburn, then that's too much at once, but otherwise, it's healthy. @Rinse & rePeat and I don't sunburn much after reducing PUFA.

The problem with getting enough B vitamins in this state is that such people drink a lot of fluid to help the dehydration, and this gets rid of them.

Thiamine (especially allithiamine) is said to be effective for this. It increases CO2, and beriberi causes lactic acidosis.

Are there blood tests that would likely be abnormal or useful besides thyroid, albumin, creatinine, or hematocrit (or anything routinely tested)?

 

[LLight]

Could it be a growth hormone deficiency? GH induces (allows?) water retention. It's also produced at high rates during fasting.

Have you tried betaine/trimethylglycine, I don't remember? I've just seen an article saying that (in pigs) it could increase GH.

Effect of betaine on growth hormone pulsatile secretion and serum metabolites in finishin pigs | Request PDF

Request PDF | Effect of betaine on growth hormone pulsatile secretion and serum metabolites in finishin pigs | An experiment was conducted to investigate the effect of dietary betaine (0%, 0.125%) on growth performance, growth hormone (GH) pulsatile... | Find, read and cite all the research you...

www.researchgate.net

Serum basal GH level, mean GH level and GH pulse amplitude were elevated by 41.79% (p<0.01), 48.98% (p<0.01) and 35.05% (p<0.05), respectively, with betaine treatment, but GH pulse frequency and pulse duration remained unchanged (p>0.05).

Growth Hormone and Fluid Retention

A major side effect of growth hormone (GH) administration is fluid retention. Most data indicate that adult GH-deficient patients are dehydrated, i.e. they have low total body water, low extracellular water and low plasma volume. When GH substitution is initiated in these patients their body fluid compartments are restored to normal. The fluid retaining capacity of GH should therefore be regarded as a desirable physiological normalization of fluid homeostasis rather than an unpleasant side effect.

 

[Callmestar]

Had a TSH blood test yesterday (Serum TSH level 1.2 miu/L [0.27 - 4.2]). So it's down from over 4 to 1.2. Must be down to the Cynoplus for which I take quarter tab in the morning and quarter tab in the evening. I feel no better at all though, despite the lower TSH. Be interesting to see if my Cholesterol has come down with the TSH. Will hope to get that tested at some point soon.

 

[Callmestar]

Testosterone has come back low again from a blood test this week. It's been bordering on low for a while. I have very high DHEA and low testosterone if anyone can make sense of that?

Serum testosterone level 7.6 nmol/L [8.0 - 31.0]

 

[Callmestar]

Could it be a growth hormone deficiency? GH induces (allows?) water retention. It's also produced at high rates during fasting.

Have you tried betaine/trimethylglycine, I don't remember? I've just seen an article saying that (in pigs) it could increase GH.

Effect of betaine on growth hormone pulsatile secretion and serum metabolites in finishin pigs | Request PDF

Request PDF | Effect of betaine on growth hormone pulsatile secretion and serum metabolites in finishin pigs | An experiment was conducted to investigate the effect of dietary betaine (0%, 0.125%) on growth performance, growth hormone (GH) pulsatile... | Find, read and cite all the research you...

www.researchgate.net

Growth Hormone and Fluid Retention

Thanks. As far as I can recall I've never had Growth Hormone tested and from just quickly looking into it, I do match some of the symptoms. I will try and get it tested.

Yes I have tried betaine/trimethylglycine, again hard to say if I've noticed any improvement.

 

[LLight]

Yes I have tried betaine/trimethylglycine, again hard to say if I've noticed any improvement.

I don't know maybe high doses (I don't know, like 5g a day) could have more effect.
It could be tried again if a growth hormone deficiency is really diagnosed.

 

[Callmestar]

I don't know maybe high doses (I don't know, like 5g a day) could have more effect.
It could be tried again if a growth hormone deficiency is really diagnosed.

I've still got them in my ridiculous cupboard of hundreds of supplements so I'll give another go go at high doses.

Depleted as every currently. Hard to know what do anymore.

 

[Callmestar]

Would it be possible to have a fat malabsorption issue, yet have high cholesterol?

I ask as my stools consistently float and are of pale colour. I'm wondering now if I have a bile deficiency and am for some reason unable to absorb/utilize fat and fat soluble vitamins.

Could this perhaps also explain when I've sometimes eaten very fatty meals, and for a brief while afterwards, symptoms are reduced?

 

[Callmestar]

Stool test results. What do you guys think?

How accurate are these tests? My stools always float, they are always pale, clay like. Clearly too much fat in the stool but this test I have a few months back claims that area of digestion is normal/good and there's no malabsorption issues.

 

[LLight]

The FXR transcription factor (and the TG5R receptor) is both involved in bile metabolism and in water homeostasis.
Maybe an agonist could help.

 

[Callmestar]

The FXR transcription factor (and the TG5R receptor) is both involved in bile metabolism and in water homeostasis.
Maybe an agonist could help.

Thanks. I've googled FXR transcription factor but excuse my ignorance I'm still not sure exactly it is. When you say an agonist, what would an example be?

 

[InChristAlone]

I just read through 85% of your log and was really rooting for you! I'm sorry to hear you are still depleted as ever. It sounded like you were seeing definite improvements with the metabolic approach, better than anything else you've tried, are you still doing that? It is by far the best thing I've ever tried for health problems. With some tweeks for high adrenaline... low liquids. I know many people suggested that you try low fluids and you refused because of the dehydration. I totally get it, when you feel so dehydrated you want to quench it, but the harder you try to quench it the worse it gets.

I have a son who is the high adrenaline type, he has always had a lot of urine and pretty clear urine, and wets the bed at night, he's 9 and still has to wear a diaper at night. I always try to get him to stop chugging juice but he refuses, so on the peeing goes. When he does decrease his fluids he seems less thirsty and healthier and then eats his meals better. We sometimes give him cyproheptadine to boost his appetite and that also has the side effect of concentrating fluids. I always wondered if he was diabetic because he was just always thirsty, but his blood sugar never got above 160 and is usually okay. I do wonder if his urine has large amounts of sugar.

Have you ever had your urine checked for sugar?

Someone over in the facebook group always told a story of a diabetic kid who controlled it by consuming pounds and pounds of cane sugar because the body was dumping such large amounts in the urine.

Anyway, when I first started out with the metabolic approach and I finally hit a really good pulse and temp suddenly I had adrenaline issues, it was like to sustain the temperature I needed way more food than I was eating. I tried the high liquid Peat approach and failed miserably. I remember the clear urine during that phase. Specifically from the high milk diet. It felt so depleting despite still giving me the nutrition I needed it wasn't the best idea because of the inability to concentrate fluids. I switched to eating regular meals with mostly solid foods and started healing. I still do that to this day and I have no issue whatsoever with dehydration or feeling thirsty. I only drink liquids with my meals and it's usually grape juice, maybe 6-7 ounces per meal. I don't need a lot of liquids unless I'm really hot. And I haven't gotten up at night to pee regularly in many yrs unless I'm really stressed and get off my schedule of liquids like say I drank a bunch of water out of nowhere.

Another thing that was essential was to make sure my temp did stay high in the winter which meant using heat lamps. They were a Godsend when I felt so cold and couldn't warm up. If I ever had problems concentrating my urine it was when I felt depleted and cold. Getting your temp up to 98.6 is absolutely essential.

 

[LLight]

Thanks. I've googled FXR transcription factor but excuse my ignorance I'm still not sure exactly it is. When you say an agonist, what would an example be?

It's a sensor of molecules, bile acids among other. Transcription factors activation triggers the expression of genes.

FXR is also involved in water conservation in the kidneys.

Citrus polyphenols seem to be FXR agonists (look at the end of the blog post):

Campari is a dual bile acid receptor agonist that activates AMPK - Fire In A Bottle

I am a huge fan of Italian bitter liqueurs. I was first introduced to the idea when I was working at Memorial Sloan-Kettering in Manhattan. A co-worker brought in a six pack of bitter soda from a local pizza place. I took a sip. It was revolting. My only thought was, “this tastes like bile...

fireinabottle.net

 

[bornamachine]

Reading your story reminds me of myself.

I've had a spell once of dehydration and I was in and out of ER rooms to get a saline IV at least because I felt near death from dehydration, everything would go through me and all my labs checked out fine

No matter what I drank, mineral water, tap water, distilled water, Gatorade etc I would just piss it light a race horse and be worse off then before I drank!

Do you know what the culprit turned out to be?

Dried prunes.

I kid you not, this happened around 2014 and I was eating a handful of prunes daily at work.

Since then ive avoided dry plums (prunes) and never had issues again, fresh plums had no negative side effects.

I did an experiment in 2017, I ate 2 or 3 small prunes, just to see if something changed, next day I'm at work, sweating cause it's hot, lips dried, can't drink because I now piss it all out, toughed it out for 2 days, stabilized on the 3rd day, assimilation back on track, hydrated.

I also can't assimilate RO or distilled water.

Hope you find help anywhere to this issue because I know exactly what this feels like and it's hell.

If it's not prunes for you start looking at what you are eating with the high potassium

 

[Korven]

Would it be possible to have a fat malabsorption issue, yet have high cholesterol?

I ask as my stools consistently float and are of pale colour. I'm wondering now if I have a bile deficiency and am for some reason unable to absorb/utilize fat and fat soluble vitamins.

Could this perhaps also explain when I've sometimes eaten very fatty meals, and for a brief while afterwards, symptoms are reduced?

Cholestasis - a.k.a poor bile flow - and high cholesterol go hand in hand because the liver can't get rid of excess cholesterol via dumping bile into the GI tract (bile acids are made from cholesterol).

How accurate are these tests? My stools always float, they are always pale, clay like. Clearly too much fat in the stool but this test I have a few months back claims that area of digestion is normal/good and there's no malabsorption issues.

They don't sound too accurate if you have clear signs of fat malabsorption and pale stools. I would focus on getting the stagnant bile sorted out because an unhealthy liver can cause all sorts of problems.

 

[LLight]

Reading your story reminds me of myself.

I've had a spell once of dehydration and I was in and out of ER rooms to get a saline IV at least because I felt near death from dehydration, everything would go through me and all my labs checked out fine

No matter what I drank, mineral water, tap water, distilled water, Gatorade etc I would just piss it light a race horse and be worse off then before I drank!

Do you know what the culprit turned out to be?

Dried prunes.

I kid you not, this happened around 2014 and I was eating a handful of prunes daily at work.

Since then ive avoided dry plums (prunes) and never had issues again, fresh plums had no negative side effects.

I did an experiment in 2017, I ate 2 or 3 small prunes, just to see if something changed, next day I'm at work, sweating cause it's hot, lips dried, can't drink because I now piss it all out, toughed it out for 2 days, stabilized on the 3rd day, assimilation back on track, hydrated.

I also can't assimilate RO or distilled water.

Hope you find help anywhere to this issue because I know exactly what this feels like and it's hell.

If it's not prunes for you start looking at what you are eating with the high potassium

Your story makes me think about a sulfite intolerance (due to a molybdenum deficiency for example).

If I remember correctly, dried fruits may be high in sulfites (for their preservation maybe?).