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Low energy, low mood? Phosphorous might be key (hypophosphotemia may be triggered by thiamine - refeeding syndrome)

Mary

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Symptoms of hypophosphatemia:
muscle weakness
fatigue
bone pain
bone fractures
appetite loss
irritability Rom
numbness
confusion
https://www.healthline.com/health/hypophosphatemia#symptoms
and more symptoms from Wikipedia:
Signs and symptoms
Muscle dysfunction and weakness – This occurs in major muscles, but also may manifest as: diplopia, low cardiac output, dysphagia, and respiratory depression due to respiratory muscle weakness.

Mental status changes – This may range from irritability to gross confusion, delirium, and coma.

White blood cell dysfunction, causing worsening of infections.

Instability of cell membranes due to low adenosine triphosphate (ATP) levels – This may cause rhabdomyolysis with increased serum levels of creatine phosphokinase, and also hemolytic anemia.

Increased affinity for oxygen in the blood caused by decreased production of 2,3-bisphosphoglyceric acid.
I’ve had severe fatigue, dysphagia (trouble swallowing, especially pills), and depressed mood from low phosphorous. I also had diplopia (double vision) for several weeks last summer, at night, most likely also from low phosphorous. And all of these symptoms disappear within a short period of time with phosphate supplementation. I was most struck by how my mood improved. I’m used to having fatigue dissipate relatively quickly with potassium supplementation. But I’ve not had my mood elevated overnight by one supplement before, but that’s what’s happened with phosphoreus. I went from feeling rather flat or glum to a bit sunny and optimistic, overnight, with phosphate supplementation. And my severe fatigue from low phosphorous started to dissipate within hours of drinking 3 glasses of kefir.

I take monosodium phosphate 3 or 4 times a week, but sometimes it gets away from me, it’s not part of my daily routine, and it doesn’t take long for the symptoms to show up when I miss it.

So why would persons with ME/CFS even consider something like hypophosphatemia - low phosphate? Because according to Chris Armstrong, persons with ME/CFS have metabolomic abnormalities like those seen in sepsis and starvation. And persons with starvation are at risk of refeeding syndrome when trying to address nutritional deficiencies. And hypophosphatemia is the hallmark of refeeding syndrome.

Cort Johnson explains it well:
Armstrong suggested a couple of reasons. He noted that many of the metabolomic anomalies he found in ME/CFS are also found in sepsis and starvation. All show reductions in amino acids and lipids and increased levels of glucose. In both diseases proteins and lipids are used to produce maintain low energy levels while glucose is used for other matters – such as immune cell proliferation in sepsis.
This state of low-level starvation is not particularly easy to escape. When the body begins starve it robs the tissues of many of the cofactors (vitamins/minerals) needed to utilize foods. If those cofactors aren’t provided along with the food a problem called refeeding syndrome can result.
Armstrong speculated that the treatment protocols similar to those used to safely bring people out of starvation might be able to help in ME/CFS. Those protocols involve providing nutrients in specific stages based on their metabolic state. Bob Naviaux has also endorsed a stepwise approach to solving ME/CFS patients’ metabolomics issues.
https://www.healthrising.org/blog/2...hronic-fatigue-syndrome-starvation-australia/

And for a primer on refeeding syndrome:
Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally5). These shifts result from hormonal and metabolic changes and may cause serious clinical complications. The hallmark biochemical feature of refeeding syndrome is hypophosphataemia. However, the syndrome is complex and may also feature abnormal sodium and fluid balance; changes in glucose, protein, and fat metabolism; thiamine deficiency; hypokalaemia; and hypomagnesaemia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

Many of us have experienced refeeding syndrome when our potassium levels tanked after starting B12 or folate or both.

I’ve also experienced refeeding syndrome after I started taking B1. At first my energy noticeably increased after taking 100 mg. of thiamine, only to be hit with severe fatigue a day or two later. I guessed that the fatigue was due to refeeding syndrome after my experience with methylfolate and potassium. However, I also guessed that it was it was my phosphate tanking which caused this severe fatigue because it felt different than the hyperkalemia I was very familiar with, potassium did nothing to alleviate the fatigue and I’d read about the link between hypophosphatemia and refeeding syndrome. So I looked up food sources high in phosphorous, drank about 3 glasses of kefir and within a few hours my energy started returning. I eventually ended up buying a monosodium phosphate supplement.

I think it’s reasonable to assume that many here either have or have had hypophosphatemia, only probably don’t know it, because almost no one looks for it.

My hypokalemia (prior to starting methylfolate) went undiagnosed for years. My blood levels were fine, though I was subject to periodic episodes of unexplained awful fatigue (not PEM) which I just had to ride out, until I experienced the identical fatigue after an initial energy boost after starting methylfolate. This post talks about how persons with ME/CFS can have low intracellular potassium despite normal blood work - and I’m guessing something similar may be at play with hypophosphatemia - that it may be possible to have low intracellular phosphate despite normal blood work. I’m just guessing here but I think it’s worth looking into.

The concept that our bodies are in starvation mode helps explain to me why I need to take so many vitamins and supplements to function: B1, B6, folate, B12, branched chain amino acids, potassium gluconate, monosodium phosphate - I never needed all of this prior to ME/CFS. And these have all made a noticeable improvement in my functioning.

Unfortunately, unlike with starvation, I don’t ever recover. I need to take these every day. All these supplements can make me feel normal, for a time. But they haven’t done a thing to prevent PEM, I’m still limited in my daily activities, but I feel so much better in my energy envelope of 3-1/2 to 4 hours a day, before triggering PEM.

Another thing to consider about phosphate is that it has an inverse relationship with calcium. Many with ME/CFS are on calcium channel blockers. Well, high calcium can lower phosphate and vice versa. Now I know I’m going out on a limb here, but I’m wondering if some of the people taking calcium channel blockers could achieve the same results, and possibly even better results, with increasing their phosphorous.
Calcium channel blockers lower blood pressure, among other things, and low phosphate is linked to high blood pressure.

I do think you have to be careful with phosphate supplementation. I don’t think it’s like vitamin C or potassium, where taking an extra couple of hundred milligrams usually makes little difference. When I first looked into a phosphorous supplement, I asked my then doctor (who unfortunately died a few years ago) about its safety. He was very knowledgeable about nutrition and supplements, and recommended I use it cautiously, so took ½ the recommended dose on the jar for quite some time, and finally worked up to a full dose (250 mg.), which is 20% of the RDA. I take this 3 or 4 times a week.

It’s also good to look up food sources of phosphorous - I found that dairy tends to be high in phosphorous. I don’t eat or drink a lot of dairy but when I first suspected low phosphorous, I drank 3 glasses of kefir and within hours felt my energy returning. It was amazing, and also I was so glad that I was going to be able to keep on taking the thiamine. I would have had to stop it otherwise, the fatigue was so severe after an initial fabulous energy boost.
 

Hd-x

Senior Member
Messages
244
I was low on intracellular phosphorous and found it a usefull supplemente.
It helped me to get ridd off things like muscle cramps, weakness and tremor.
About max. safe dosings:

NRV is 700mg
NOAL is 750mg (additional phosphorous from supplements besides foods)
SUL is 2.400 mg total phosphorous from all sources. High long term dosages may have the risc for getting plague (from CA / Calcinose). There were studies with 2000mg over 15months without doing any harm, so it would be wise to stay below this amount.
Phosphorous is sometimes used in few sports by pre-charging a higher amount for 4days to increase (temporary) endurance.
 
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ljimbo423

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It’s also good to look up food sources of phosphorous - I found that dairy tends to be high in phosphorous.

Interesting post Mary. With my diet I seem to be getting a lot but I still wonder if it's enough. With CFS, I never know.:) Here are some food sources-

1577560950526.png


https://ods.od.nih.gov/factsheets/Phosphorus-HealthProfessional/#h3
 

Mary

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Texas Hill Country
Interesting post Mary. With my diet I seem to be getting a lot but I still wonder if it's enough. With CFS, I never know.:) Here are some food sources-
Thanks @ljimbo423! Yeah, I think I found a similar table when I first suspected low phosphorus, which is what led me to drinking 3 glasses or so of kefir, which very pleasantly surprised me by alleviating the horrible fatigue! You're right, with ME/CFS, we never know! I shouldn't have to take all the supplements that I do, in order to function, but I do!
 

ljimbo423

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I shouldn't have to take all the supplements that I do, in order to function, but I do!

Ditto! I have supplements everywhere. By my bed, on my side table, on my kitchen table, my computer desk and my kitchen counter. That's just the ones I take daily! Not counting all the "backups" I have in boxes, in my hallway.:lol:

Without them, I'm basically a basket case.
 

Hd-x

Senior Member
Messages
244
how did you determine you had low intracellular phosphorous? Did you have a blood test? and if so, which one?
It was the attached blood test, it isnt serum blood work - it is called " lysierte EDTA Vollblutanalyse" - unfortunatly I dont know the english term/word :( for this kind off blood work. It measures intra and extracelular minerals.

I also made in past an "Oligeoscan", but I dont really trust those mineral scanning machines,
so I maked an additional "lysierte EDTA vollblutanalyse" blood work (in a trustfull lab) to be sure.
 

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Hd-x

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244
Also, could you please clarify what these abbreviations mean;: NRV, NOAL, SUL - I'm not familiar with them, thanks!
NRV = recommend daily needed P amount
NOAL = No Observed Adverse Effect Level (for additional 750mg Phosphorous from supplements)
SUL = (max. obvisously) Safe upper limit from all sources (foods + supplements together)

The SUL is with 2400mg a little bit higher then long term studies (2000mg daily).
If you want to be on the most safest side, stay below 2000mg.
1450mg from all sources (700mg from foods + 750mg from supplements) would be NOAL. If ppl. have a sensitive gut, it may happen that they dont tolerate that well more then 250mg phosphorus from supplements.
 
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Mary

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Ditto! I have supplements everywhere. By my bed, on my side table, on my kitchen table, my computer desk and my kitchen counter. That's just the ones I take daily! Not counting all the "backups" I have in boxes, in my hallway.:lol:
:_ Don't forget the bathroom, btw, for a big bag of supps to help with sleep!

Without them, I'm basically a basket case.
Absolutely -Without all my daily pills, I'd be almost bedridden! It really seems we are in endless starvation mode!
 

Hd-x

Senior Member
Messages
244
Without all my daily pills, I'd be almost bedridden! I
Same with me, I also take a lot off supplements and doing so helped me to reach the "next level".
Now I am hanging "anywhere" betwenn the worlds. I have my strenght back, but not my endurance. It is a difficult situation because I dont look sick anymore and doctors think "the guy looks well, he can´t be sick".
I used in past Creatinglycerolphosphate (CGP) and Creatinolfosfate (=COP, this is not Creatin), but since this stuff is expensive I switched over to Swansons Monosodiumphosphate (MSP) + Creatinmalate (+ some other stuff).
 

Mary

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Texas Hill Country
It is a difficult situation because I dont look sick anymore and doctors think "the guy looks well, he can´t be sick".
Yep! We need a definitive blood test so badly, so that doctors no longer assume we are well because we look well!

I switched over to Swansons Monosodiumphosphate (MSP) + Creatinmalate (+ some other stuff).
I take the same thing, Swanson's monosodium phosphate. It's hard to find, and Swanson's is one of the few places that carries it. I've never tried creatinmalate, but I am taking creatine HCL - it's supposed to be easier on the stomach than creatine monohydrate. I'll have to look into the creatinemalate! :)
 

Hd-x

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I've never tried creatinmalate
Creatinmalate is (like CGP) also fine for all ppl. with sensitive gut/stomach.
another option would be Creatinorotate, it is also fine for sensitive gut/stomach and will not make you bloated nor draw much water like Creatinmonohydrate did. Another good thing is that the body can use Malate and Orotate for energy production.
 
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godlovesatrier

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Another good link here especially for americans as the list is primarily american food stuffs:

https://www.nutritionvalue.org/foods_by_Phosphorus,+P_content.html

I'm very intolerant to dairy, I was as a baby and it came back when I got diagnosed with ME, although it's the lactose that seems to be the issue, still even in tiny tiny amounts I react to lactose, so I just stay away, I can tolerate lacto free milk and that's it.

Interesting about the phosphorous though, considering my dairy exclusion, I am going to look into this. Thanks @Mary

2 tablespoons of hemp seed seems to be enough? https://www.nutritionvalue.org/Seeds,_hulled,_hemp_seed_nutritional_value.html

3 tablespoons is 495mg, so my rough math says 2 might work! :)

Also: https://www.swansonvitamins.com/swanson-premium-98-pure-monosodium-phosphate-4-oz-113-grams-pwdr
 
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YippeeKi YOW !!

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@Mary
This is a TERRIFIC thread !!! Oddly enough, I've been looking into phosphorus, too, and have been held back only by the warnings that phosphorus, in any but very small, cautious amounts, can have a boat-load of unpleasant side effects.


This thread has helped enormously. Because the Christmas Monkey Demons usually hit me sometime between Halloween and Thanksgiving, the energy reserves to continue any form of research did a fast bunk and I've had to restrict output to the 'absolutely necessary' level.

This thread has been a real blessing :angel: :thumbsup::thumbsup:.

Also @ljimbo423 's chart of food content, tremendously helpful as well, thank you for that :hug::hug::thumbsup::thumbsup:!!!

And @godlovesatrier , thank you for that link, very helpful :woot::woot::thumbsup::thumbsup:
 
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Mary

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@godlovesatrier - that's an exhaustive list - thank you! :thumbsup: I don't eat a lot of dairy, but I'm not as sensitive as you. I only drank 3 glasses of kefir in one sitting to try to get a lot of phosphorus quickly, it was what I had on hand, to see if it would help. Ordinarily I would drink about 3 glasses a week

Hemp seeds seem to be an excellent source of phosphorous! Thanks for the link :)

I do take that Swanson's monosodium phosphate supplement.

One thing about refeeding syndrome and ME/CFS in general and how I react - I seem to need more than the RDA of several nutrients and I'm guessing this is true of many others here. So even if I was getting the RDA of phosphorous, it might not be enough. I just go by how I feel. e.g., I have to take extra potassium every day - otherwise I get low potassium symptoms pretty quickly.
 

Mary

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@YippeeKi YOW !! - I'm so glad you found this thread helpful! I've posted a few times about how much phosphorous helped me, especially when I started taking thiamine, and I knew about the refeeding syndrome link, but having Chris Armstrong's evidence of starvation and ME/CFS allowed me to tie everything together. :)

I had thought of tagging you in this thread because of your post about Christmas Monkey Demons - thinking just maybe low phosphorous might play a role - but was afraid it might be seen as dismissive of your experience.

Oddly enough, I've been looking into phosphorus, too, and have been held back only by the warnings that phosphorus, in any but very small, cautious amounts, can have a boat-load of unpleasant side effects.
Yes, this is exactly what you come across when reading about phosphorous - it's the exact same type of thing you find when you read about taking potassium - danger, danger! But potassium's been a lifesaver for me. From what I read, hyperphosphatemia is much more common than hypophosphatemia, in large part due to all the sodas many drink. I can't remember the last time I had a soda.

I have been cautious with the amount of phosphate that I take. I don't know enough about it, so I'm careful with my dosing. I don't think it's like vitamin C or potassium where you can generally take a few or several hundred milligrams with no ill effect.

In any event, it's been huge for me to discover that I needed more phosphorous. It's allowed me to take thiamine which has been so helpful to me, and it's helped my overall energy and mood. I hope it's helpful for you! :nerd:
 

YippeeKi YOW !!

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I don't think it's like vitamin C or potassium where you can generally take a few or several hundred milligrams with no ill effect.
You're absolutely right .... it definitely isn't !!!
In any event, it's been huge for me to discover that I needed more phosphorous.
Please keep posting updates here, yes?


Due to my current sort of punk condition, I won;t be trialing anything new (with the exception of what looks to be an excellent bottle of sherry that DB brought home for me, the wag) for the next week or two, maybe more.

Definitely more if it turns out that I still can;t tolerate even small amounts of alcohol. Am hoping that maybe that's changed, like my new ability to tolerate de-caf diluted coffee, because nothing smooths out the day's wrinkles like a little tot of something soothing and mildly alcoholic.
 
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