Low phosphate - testing for FgF23?

[Wall Paper]

Hello worlds, good afternoon or morning – depending on what part of the world you are from!

After being ill for over a decade, right now I am struggling with my phosphate level. A
year ago it was 0.5 and after changing my diet it was 0.74 last time my blood was drawn. It should be between 0.8 and 1.5.

My doctor suggested a test that is new in the Netherlands and checks my hormone FgF23. Apparently that can cause the reduced intake of my phosphate. However - as far as I know – phosphate being too low doesn't seem to be a threat to my health? So I wonder... perhaps someone can explain to me how this works and whether or not it is useful to be tested for it. If indeed, there is something wrong with that specific hormone, can it be fixed?

An explanation of my current situation: I am housebound, experience difficulty with exercising in general, headaches, shortly: not doing good. So far I have not noticed anything different, while the levels of phosphate increased.

Thanks, Wall Paper

 

[aaron_c]

Testing is always good, especially if it is free

Is there any chance you take a folate and/or B12? Methylfolate and methylcobalamin in particular have been known to increase our need for potassium--I don't think anyone knows why.

Other than this, I'm not sure. Does anyone know if this is to be expected in PWME?

 

[Mary]

Hello worlds, good afternoon or morning – depending on what part of the world you are from!

After being ill for over a decade, right now I am struggling with my phosphate level. A
year ago it was 0.5 and after changing my diet it was 0.74 last time my blood was drawn. It should be between 0.8 and 1.5.

My doctor suggested a test that is new in the Netherlands and checks my hormone FgF23. Apparently that can cause the reduced intake of my phosphate. However - as far as I know – phosphate being too low doesn't seem to be a threat to my health? So I wonder... perhaps someone can explain to me how this works and whether or not it is useful to be tested for it. If indeed, there is something wrong with that specific hormone, can it be fixed?

An explanation of my current situation: I am housebound, experience difficulty with exercising in general, headaches, shortly: not doing good. So far I have not noticed anything different, while the levels of phosphate increased.

Thanks, Wall Paper

Low phosphate can indeed seriously affect energy levels, etc. and in the below study, was found to occur in 10% of the CFS/ME patients studied:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2360873/

Here's a rather long article about hypophosphatemia which mentions FgF23:
http://emedicine.medscape.com/article/242280-overview#a5

And here's a PR thread about this:
http://forums.phoenixrising.me/inde...-patients-with-chronic-fatigue-syndrome.4494/

So I would definitely get the test done. Where you go from there, I don't know, but it is possible to raise phosphate levels and it sounds like low phosphate could cause many (if not most?) of your symptoms. I think you have a good doctor.

 

[Wall Paper]

Thank you both, Aaron and Mary, for getting back to me and your suggestions. Just reading your replies makes me feel hopeful again, but that is just the point. I have been tested over and over again, always hoping to find something that causes my illness, praying for something that could be fixed. Over and over again, then being disappointed, but there is another possibility, again: hope with the inevitable negative result and again disappointment. The never ending circle of M.E.

Therefore, I am not thinking testing is always good, perse. It is a lot of effort to get my blood drawn at the hospital, instead of the nurse coming to my home. I really don't understand why the logistics need to be different for this special test... I need to skip breakfast... you know how it works.

 

[Justin30]

I had low phosphates and potassium that almost killed me.

You have to be careful with levels of both as certain drugs and supplements will lower them.

I was supplmenting but not enough.