In 07/2020 one day I was pretty well and the next day I felt unwell (short of breath, fatigue, exhausted) after 3 day I went to A&E, and the only thing was no right it was the phosphate, they gave me Phosphate Sandoz to take for 5 day, after 1 week I was feeling worse, went back to A&E and my phosphate was lower than before, I had to be admitted, and I had phosphate intravenous, I was discharged. 1 month later I went to A&E again, and the phosphate was low again.
Since 08/2020 I take Phosphate Sandoz 2000/3000mg and have blood test to check the level every two months. I was sent to endocrinologist, pulmonary team, gastrologist, many test were done (blood, urine, faeces, gastrocopy, all normal),
Last year I was referred to new consultant and he said the only test the endocrinologist didn't request was the FGF23 (Fibroblast growth factor 23) I had to stop the phosphate Sandoz for week to have this test done, in 08/2022 first test was inconclusive, second test 11/22 the laboratory made an error, third test 02/23 came back normal, then I do not have Oncogenic osteomalacia.
Every time I had to stop the phosphate Sandoz I felt very unwell (fatigue, problems to breath and after I start taking phosphate, it take almost 2 months to feel better), in 2020 it left me 9 months fatigue, I could even walk 400 steps. I Felt very exhausted.
The consultant sent me back to my GP, he'll try to send me to University Hospital.
I have IBS, acid reflux, gluten and lactose intolerance, had gallbladder surgery, and have other problems with hip and shoulder. Apart from these problem I'm pretty heath. I'm 1,69cm tall, 58kg, never had fractures, never smoked, don't drink, I do meditation, I'm calm.
Until now all the disease were discarded, nobody now why my phosphate does not stay on my body. If someone have this problem, cloud you let me know, thanks 😉
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Azumi
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Often when doctors tell us our thyroid blood tests are 'normal' they can be far from normal and indicating our thyroid might be struggling.
Have you ever had your thyroid antibodies tested, if you haven't you should.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to this, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
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Phosphate is one of the body's electrolytes. Lots of problems can be caused by too high or too low a level of electrolytes, and too much or too little of one electrolyte can have an impact on levels of other electrolytes.
Refeeding syndrome is a metabolic disturbance that occurs as a result of reinstitution of nutrition in people and animals who are starved, severely malnourished, or metabolically stressed because of severe illness. When too much food or liquid nutrition supplement is eaten during the initial four to seven days following a malnutrition event, the production of glycogen, fat and protein in cells may cause low serum concentrations of potassium, magnesium and phosphate.[2][3] Cardiac, pulmonary and neurological symptoms can be signs of refeeding syndrome. The low serum minerals, if severe enough, can be fatal.
I know that many people are very low in magnesium and that magnesium testing is not reliable. If your kidneys are functional then you could take magnesium supplements because excess would be excreted in urine.
Low potassium is a serious problem too. I once ended up in hospital with a suspected heart attack when my potassium level matched the bottom of range (i.e. I wasn't even deficient - officially), but my normal-for-me potassium level is mid-range or a little higher. It never happened again.
I wonder if the constant replenishment of your phosphates is causing problems with your potassium or magnesium.
Thanks humanbean, my potassium and magnesium were tested as well, I have bone profile blood test every two months. I'm reading everything about phosphate, I was very well when I started to have the problem. Good knows what is going on. 😉
Magnesium can show good results even in states of deficiency. The body needs magnesium in the serum, the red blood cells, muscle, bone and soft tissue.
The body prioritises keeping a good level of magnesium in the blood, and if there isn't enough it will steal it from soft tissue, bone, and muscle. Since testing involved the blood it can look like there is plenty of magnesium even though your bones, muscles, and soft tissues are deficient.
Only 0.3% of the body's total magnesium is found in the serum, 0.5% in the red blood cells.
If you aren't currently taking magnesium and haven't supplemented it before, and you have functioning kidneys, then it would be worth your while to try supplementing magnesium for a couple of months and see if it helps.
I’ve just come across this post, so you may have addressed this already. Have you had tests for primary hyperparathyroidism disease PHPT- causes low phosphate?
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