Mary
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I saw an endocrinologist a few weeks ago, hoping to get him to figure out why I need to take so much phosphorous to avoid hypophosphatemia symptoms (difficulty swallowing - especially pills, extra fatigue) and the same for potassium, though my symptoms of low potassium are different - painful spasms and twitches in my lower calves/feet though I did have severe fatigue with hypokalemia after starting methylfolate in 2010. Many people get cardio symptoms with low potassium.
Much to my surprise, the endo actually listened to me, unlike previous endos I have seen. I had to talk quickly - a lot to explain in a few minutes, ME/CFS, refeeding syndrome . . . I know most doctors now, especially in large group practices, are tightly regulated by their corporate bosses in terms of how much time is spent with patients etc.
I brought a printout from the Mayo Clinic: Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext) as a primer for ME/CFS and also a couple of studies on 2-day CPET, hoping to impress upon him that ME/CFS is real. And he kindly took these, and said he’ll take a look and that it might help other patients (!) He even asked what kind of work I used to do and I told him legal secretary and he nodded, he was impressed with the research I had brought him . . . so different from the first endo I ever saw who refused to even look at the research I brought. I wanted to tell this endo that this was nothing, that there are people here on PR who are absolutely brilliant and we’ve all had to do our own research --
So he ordered blood work, I saw the results today on-line and lo and behold, there was an abnormality - phosphate IS low, despite me taking 750 - 1000 mg per day on my own initiative. Normal range for alkaline phosphatase (ALP) 40 - 142, and my result was 36.
It was very surprising to finally have an abnormal result on blood work. My potassium was in the normal range (4 out of normal range of 3.5 - 5.4), though I have to take 1200 - 1400 mg of potassium a day to achieve this.
I had asked him about phosphate diabetes - an old study (https://pubmed.ncbi.nlm.nih.gov/9683977/ ) found that 10% of 87 CFS patients had phosphate diabetes. Of course there are several questions about this study, not least whether or not the patients actually had CFS. Low phosphorous can cause severe fatigue so if someone is excreting too much phosphorous in their urine, chances are they will have severe fatigue and won’t get properly diagnosed and will just be told they have CFS, especially 26 years ago.
(If anyone has any questions, there’s no doubt I have ME/CFS. I’ve had PEM for 26 years - severe fatigue, feeling like I’ve been hit by a truck, which hits some 24 hours post-exertion and used to last close to 3 days and now generally 1 day, thanks to BCAAs. But low phosphorous causes me extra fatigue on top of PEM.)
Anyways, I just wanted to let y’all know that something finally showed up on blood work! And that we truly have to be our own doctors. No one diagnosed me with hypophosphatemia before. I did tell the endo we’ve been left on our own. He listened to me, and I thanked him at least 3 times at the end of the visit for listening.
Also, I asked him about phosphate diabetes which requires a 24-hour urine test I believe and he gave me the urine test kit but told me to hold off doing the test until he saw the blood work.
So when I called the doctor’s office today, I was told he does want to see me for a follow up visit But he has no appointments available through most of the coming year (!) - I asked them to repeat this, and that is what they said, so I’m now on a cancellation waiting list. I wish it wasn’t so rare to find a doctor like him. Otherwise I might be tempted to go elsewhere but oh well!
And also I asked them to find out if he wants me to get the 24-hour urine test done before this appointment. Otherwise I’ll have to jump through hoops all over again, trying to get to see him after that test. And have to wait for a call back on this. I’m really glad I don’t need anything urgently from him.
I almost never see anyone else post about problems with low phosphorous, though I imagine low phosphorous is not high on any doctor’s list. But I never had problems like this pre-ME/CFS. I think it’s an issue which is probably greatly under-diagnosed with ME/CFS.
I want to encourage people to be pro-active re their health. You can’t rely on your doctors, you just can’t. Too many only care about cholesterol and BP and blood sugar and that’s about it.
Also, I’ve had to take phosphorous for several years now - I forget exactly how long it’s been, maybe 6 years? 7? And I think I recall seeing a low ALP number on only one blood test before. But I’ve noticed in recent months that I had to increase my dose to avoid symptoms.
Now the question becomes, if I have phosphate diabetes, then what? Probably nothing, just keep taking my phosphorous but maybe I’ll get a prescription which might be covered instead of paying out of pocket for it.
And, fwiw, muscle testing has been invaluable for me in navigating phosphorous issues (and several other things) - first in helping to determine I did have a problem with low phosphate, and then in deciding how much to take. If we had good medical care and doctors who were knowledgeable about health and not just handing out drugs, I wouldn’t need to rely on MT so much, but I am eternally grateful for stumbling across MT (done by my chiropractor) back in the mid-1990's.
Much to my surprise, the endo actually listened to me, unlike previous endos I have seen. I had to talk quickly - a lot to explain in a few minutes, ME/CFS, refeeding syndrome . . . I know most doctors now, especially in large group practices, are tightly regulated by their corporate bosses in terms of how much time is spent with patients etc.
I brought a printout from the Mayo Clinic: Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext) as a primer for ME/CFS and also a couple of studies on 2-day CPET, hoping to impress upon him that ME/CFS is real. And he kindly took these, and said he’ll take a look and that it might help other patients (!) He even asked what kind of work I used to do and I told him legal secretary and he nodded, he was impressed with the research I had brought him . . . so different from the first endo I ever saw who refused to even look at the research I brought. I wanted to tell this endo that this was nothing, that there are people here on PR who are absolutely brilliant and we’ve all had to do our own research --
So he ordered blood work, I saw the results today on-line and lo and behold, there was an abnormality - phosphate IS low, despite me taking 750 - 1000 mg per day on my own initiative. Normal range for alkaline phosphatase (ALP) 40 - 142, and my result was 36.
It was very surprising to finally have an abnormal result on blood work. My potassium was in the normal range (4 out of normal range of 3.5 - 5.4), though I have to take 1200 - 1400 mg of potassium a day to achieve this.
I had asked him about phosphate diabetes - an old study (https://pubmed.ncbi.nlm.nih.gov/9683977/ ) found that 10% of 87 CFS patients had phosphate diabetes. Of course there are several questions about this study, not least whether or not the patients actually had CFS. Low phosphorous can cause severe fatigue so if someone is excreting too much phosphorous in their urine, chances are they will have severe fatigue and won’t get properly diagnosed and will just be told they have CFS, especially 26 years ago.
(If anyone has any questions, there’s no doubt I have ME/CFS. I’ve had PEM for 26 years - severe fatigue, feeling like I’ve been hit by a truck, which hits some 24 hours post-exertion and used to last close to 3 days and now generally 1 day, thanks to BCAAs. But low phosphorous causes me extra fatigue on top of PEM.)
Anyways, I just wanted to let y’all know that something finally showed up on blood work! And that we truly have to be our own doctors. No one diagnosed me with hypophosphatemia before. I did tell the endo we’ve been left on our own. He listened to me, and I thanked him at least 3 times at the end of the visit for listening.
Also, I asked him about phosphate diabetes which requires a 24-hour urine test I believe and he gave me the urine test kit but told me to hold off doing the test until he saw the blood work.
So when I called the doctor’s office today, I was told he does want to see me for a follow up visit But he has no appointments available through most of the coming year (!) - I asked them to repeat this, and that is what they said, so I’m now on a cancellation waiting list. I wish it wasn’t so rare to find a doctor like him. Otherwise I might be tempted to go elsewhere but oh well!
And also I asked them to find out if he wants me to get the 24-hour urine test done before this appointment. Otherwise I’ll have to jump through hoops all over again, trying to get to see him after that test. And have to wait for a call back on this. I’m really glad I don’t need anything urgently from him.
I almost never see anyone else post about problems with low phosphorous, though I imagine low phosphorous is not high on any doctor’s list. But I never had problems like this pre-ME/CFS. I think it’s an issue which is probably greatly under-diagnosed with ME/CFS.
I want to encourage people to be pro-active re their health. You can’t rely on your doctors, you just can’t. Too many only care about cholesterol and BP and blood sugar and that’s about it.
Also, I’ve had to take phosphorous for several years now - I forget exactly how long it’s been, maybe 6 years? 7? And I think I recall seeing a low ALP number on only one blood test before. But I’ve noticed in recent months that I had to increase my dose to avoid symptoms.
Now the question becomes, if I have phosphate diabetes, then what? Probably nothing, just keep taking my phosphorous but maybe I’ll get a prescription which might be covered instead of paying out of pocket for it.
And, fwiw, muscle testing has been invaluable for me in navigating phosphorous issues (and several other things) - first in helping to determine I did have a problem with low phosphate, and then in deciding how much to take. If we had good medical care and doctors who were knowledgeable about health and not just handing out drugs, I wouldn’t need to rely on MT so much, but I am eternally grateful for stumbling across MT (done by my chiropractor) back in the mid-1990's.
