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Severe fatigue due to low phosphorous

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Mary, Jun 1, 2018.

  1. Mary

    Mary Forum Support Assistant

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    I should have figured it out sooner ... the past couple of weeks I have had extra unexplained fatigue, sometimes severe - yesterday it was very bad. I also had had slight congestion and figured it was a special bug that made me very tired with only slight symptoms.

    Yesterday I finally began to realize that something else was going on - low phosphorous came immediatleyi to mind and sure enough that was the problem.. Low phosphorous can cause horrible fatigue - from Wikipedia:

    I took 2 doses of my phosphate supplement yesterday and drank a glass of kefir this morning, and suddenly now I have energy. Yesterday I barely managed to wash my hair and that was all I was able do. Ordinarily I can do more, if not crashed etc.

    Hypophosphatemia can occur in people with ME/CFS in at least 2 ways: refeeding syndrome and phosphate diabetes, though there very well could be others.

    Hypophosphatemia is the hallmark of refeeding syndrome (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/)

    I first experienced it after taking B1. The B1 initially boosted my energy markedly and then a day or 2 later severe fatigue hit. It felt different than the fatigue I get with low potassium - no muscle twitching, it just felt different. I’d read about hypophosphatemia before in connection with refeeding syndrome so I guessed that’s what happened. I read about natural sources of phosphorous, drank 2 or 3 glasses of kefir and within a few hours the horrible fatigue started to lift. Since that time I’ve drunk kefir a few times a week (also good for my gut) but I’ve slacked off a lot for several weeks. I also eat a lot of sunflower seeds which are high in phosphorous. And I have a monosodium phosphate supplement I got from Swanson’s which I use from time to time in small doses, while trying to get the phosphate I need from food. I am beginning to think I might need extra phosphate every day, just as I do with potassium.

    Phosphate diabetes (unrelated to diabetes types 1 and 2) occurs in 10% of ME/CFS patients according to this study:
    But there is so little research on phosphate diabetes and ME/CFS, I would not be at all surprised if it was much more common. We have so many other weird things happen to us, why not that?

    This article says that hypophosphatemia rarely shows up in the blood because
    and that

    Which means that it will not be on your doctor’s radar screen.

    My alkaline phosphates level (part of comprehensive metabolic panel) a few years ago was low, but never flagged by anyone, and low alkaline phosphates can be caused by hypophosphatemia, as well as other things. However, my level the last 2 years was normal, albeit on the low end. But I get symptoms of hypophosphatemia, perhaps as explained by the Oregon State article above - that the body compensates to keep normal serum levels but you can still be deficient. Perhaps this is similar to how people with ME/CFS can have normal serum potassium levels but low intracellular potassium: https://forums.phoenixrising.me/ind...ded-in-methylation-treatmt.18670/#post-291422

    Or high levels of serum B12 but low intracellular. Standard blood tests alone just don’t seem to work that well for people with ME/CFS.

    Everything you read about low phosphorous will talk about how rare it is and how you practically have to be starving to have it or some rare genetic defect. I don’t know of any doctors who will look at this. So, as almost always, we have to do our own research on this.
     
    Last edited: Jun 1, 2018
  2. Runner5

    Runner5 Senior Member

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    Sometimes I feel a lot better after a Coke and I noticed soda usually contains phosphoric acid - would phosphorous be why or is it just the caffeine / sugar hit? The effect seems to last a long time for me, but with my health I usually don't drink Cokes unless I have the flu or some kind of bug.

    I often have electrolyte imbalances so I was curious about Phosphorous. Thanks for sharing this!
     
  3. Mary

    Mary Forum Support Assistant

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    It could be all 3 things. (My body likes caffeine too! ;)) You might try looking into high phosphorous foods and see if they help in general. I really do think this is a huge issue for many people which is never identified.

    I can't remember the last time I had a soda, but I know they usually do contain some form of phosphorous and I read today that dark colas have more than lighter drinks.
     
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  4. RWP (Rest without Peace)

    RWP (Rest without Peace) Senior Member

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  5. Mary

    Mary Forum Support Assistant

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  6. lafarfelue

    lafarfelue Senior Member

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    Thanks for sharing @Mary . I appreciate your knowledge, opinions and experiences.

    I really need to get to a functional medicine Dr and also learn the best muscle testing that works for me. Feels like I won't be able to figure so many of these 'smaller' supplements out for myself otherwise! Bodies; how are they so complex o_O
     
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  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I think you mean alkaline phosphatase, an enzyme. See https://labtestsonline.org/tests/alkaline-phosphatase-alp
     
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  8. Mary

    Mary Forum Support Assistant

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    You're right, thanks! :thumbsup:
     
  9. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    It also contains carbonic acid, which according to wikipedia "...plays an important role in the bicarbonate buffer system to maintain acid–base homeostasis."

    I crave carbonic acid, not so much with phosphoric acid.
     
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  10. alex3619

    alex3619 Senior Member

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    Phosphate diabetes, which is a cause of low phosphorus, has long been associated with a subset of ME. This goes back decades. I have blogged about this several times. The usual self-test seems to be something like take a dose of something with phosphorus and take vitamin D at the same time. The vit D is added because it should assist retaining phosphorus. I have not looked at this science in many years however.
     
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  11. alex3619

    alex3619 Senior Member

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    I have noticed some patients, including me, who seem to do better with Coke or Pepsi provided it does not aggravate other issues ... so for me that means sugar free coke, and not too much because of the caffeine. However in my case my constant sore throat is much improved if I drink carbonated water, at least for a while. The gassier the better ... this needs to be highly carbonated drinks. In a discussion with a chiari patient nearly two decades ago they responded to carbonated water the same way.
     
  12. soxfan

    soxfan Senior Member

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    @Mary ..I am taking B1 but have been for a couple months. I am now wondering if that is the cause of my new weird fatigue. I am not sure if this would have started immediately as I believe I started taking it in March...

    I am so sorry you are having bad fatigue too...I have been writing to you non stop with all my problems. I am having another rough day too..
     
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  13. Mary

    Mary Forum Support Assistant

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    I take 5000 IU of vitamin D daily. But adding in kefir (which I can't drink daily so it doesn't give me enough phosphorous) and monosodium phosphate is making all the difference. I remember you posting before about this issue. I happened upon it a few years ago when I started taking thiamine. The sudden onset severe fatigue, after an initial energy boost, was hard to ignore :eek:

    BUT I am now thinking I probably need extra phosphate almost daily. I was only taking it once in awhile. And I'd have some good days where I actually felt a bit perky (though still had to limit activity to avoid PEM), or where I was dragging. And I now think phosphorous is the key. I feel so much better right now than a few days ago where I could barely do anything. I am mentally kicking myself a little for taking so long to figure this out! :bang-head: Time will tell, but so far so good ---

    (BTW, I take a ton of other stuff too, including B12, folate, P-5-P, benfotiamine, B complex, CoQ10, d-ribose, Carnitall, lots of magnesium, potassium, to name a few.)
     
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  14. Mary

    Mary Forum Support Assistant

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    Hi @soxfan - it's possible that phosphorous and/or even potassium are being depleted by the thiamine - it's not so much that thiamine causes them to be depleted, but rather it uses up more of various nutrients, thus causing a deficiency. There's one way to find out. Can you eat dairy? When I first suspected my phosphorous was low, I drank probably 3 glasses of kefir - dairy products are high in phosphorous - and sure enough, that awful fatigue started to go away. then I ended up getting a phosphate supplement.

    With potassium, an easy way to see if it is low is to drink several glasses of low-sodium V8 (low-sodium is higher in potassium than regular V8) and see if you start to feel better in a few hours. I think it's pretty reliable. And then depending on what happens, you can do research or talk to your doctor about possibly adding in supplements. I take a potassium supplement daily and am going to increase the frequency of my phosphate supplement.

    My bad fatigue is gone since I increased my phosphate! :)
     
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  15. Runner5

    Runner5 Senior Member

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    I was out in the sun today walking around the beach and felt really sick and like I was crashing, I was just out too long in direct sun + sun off the water (and I'm super pale) waiting for my family to come back and pick me up. Thought of this thread, had a large coke from McD's on the way out of town and then a nap when I got home and feel quite a lot better. Made me think with the link with vitamin D and phosphorous. Living in the rainforest I rarely get actual sunlight so I probably had a huge dose today all of a sudden. Maybe that's not a thing and I was just dehydrated, but I'm convinced enough I'm going to keep sources of phosphorous around and look into that more.

    (I can't drink too much dairy but there is a guy on YouTube who posted a video saying he cured his IBD by going to a local dairy, picking up gallons of fresh milk and turning it into Kefir and drinking it in abundance every day. I was inspired giving Kefir a good go, but between the fact it was dairy and probably not a great brand because the taste was a little horrifying...I just couldn't stick it out, but seems like good stuff.)
     
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