I went to my nephrologist a few days back to discuss my Vitamin D deficiency. He wasn't as alarmed as I had expected him to be. Now, he is a guy who doesn't hide his emotions. For example, when I told him my feet felt numb a few months back, he exclaimed, "Oh, no!" Not very comforting to hear your doctor say that, is it? He thought it could be early signs of a stroke. In the end it turned out to be peripheral neuropathy, which is not even half as worrisome as a stroke!
Anyway, he wasn't worried at all. The test which I got done indicated the level of 1 alpha 25 dihydroxy cholecalciferol (1 Alpha D3), which is the active form of Vitamin D. The Vitamin D that we take in as part of food and the sun is basically an inactive form which the kidney processes to form 1 Alpha D3 which is used by the body to increase the absorption of Calcium from the food we take in. So, basically if there is a dip in this level, Calcium is not absorbed enough by the body and the bones become weak and brittle and then pain.
The test that is generally done, at least in Hyderabad is for the inactive form of Vitamin D which is not an accurate marker. The test that was done at Yashoda hospital was for the active form which is a more accurate indicator.
So, my neph put me on Calcitriol 0.25 micrograms a day. I was asked to take this for a month and then check my Calcium and PTH level. The problem with Calcitriol is that it causes Hypercalcemia and Hyperphosphatemia, basically increased Calcium and Phosphorus levels in the blood. My Phosphorus has been consistently low ever since I started daily nocturnal dialysis. So, this will be a good side effect for me!
The levels of Vitamin D are also linked to the levels of PTH in the body. My PTH has been really high for a few months now and I have been taking cinacalcet for this.
There are a couple of other drugs available now (not sure if they are available in India though) - Zamplar and Hectoral which are supposed to have lesser side effects than Calcitriol. I must check and discuss them with my nephrologist.
Either way, let's hope the bone pain settles down soon.