I got my Phosphorus tested a few times over the last few days. It continues to remain a mystery. My pre-dialysis value was 1.5 mg/dl. Post dialysis, it was 2.1 mg/dl. On Monday night, before dialysis it was 2.2 mg/dl. Which is kind of totally crazy. Dialysis is supposed to remove Phosphorus while in the time between sessions, it is supposed to increase because you are eating food, most of which has Phosphorus. It is exactly the other way round for me!
I went and met with my nephrologist yesterday with these values. He was as perplexed as I was. He suggested that I take a huge amount of Phosphorus orally. He asked me to try Joulie's solution or double my Neutraphos dose from two packets a day to four packets a day. He has also put me on carnitor and calcirol granules.
The bone pain is not getting better. Its been about seven months since it started and about two months since I started the regular calcium acid solution. The suspicion is that the chronic hypophosphatemia may have a role to play in the bone pain. We did toy with the idea of getting a bone biopsy but it is an extremely complicated thing and is not even done in the city.
For me, personally, the bone pain is getting very frustrating. It is causing me to limp quite badly and every movement I make, I can feel the pain in my back, ribs and feet. It is not a severe, unbearable pain, but it is a constant nagging pain. It gets worse as I get more tired through the day and is bad in the evening. It gets better when I swim in the morning, possibly due to the stretching.