Mary
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Symptoms of hypophosphatemia:
and more symptoms from Wikipedia:
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:
And for a primer on refeeding syndrome:
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.
https://www.healthline.com/health/hypophosphatemia#symptoms
and more symptoms from Wikipedia:
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:
https://www.healthrising.org/blog/2...hronic-fatigue-syndrome-starvation-australia/
And for a primer on refeeding syndrome:
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.
Here are some food sources-
