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.
Check to thyroid every 6 months, still normal.
My medication: Accrete D3 tablets 1200mg, Colecalciferol 1,000unit tablets, HRM, vitamin C, magnesium.
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 😉