We have all heard and seen in the media how people throughout the world are suffering from vitamin D deficiencies and how it is a leading cause of osteoporosis, fracture and death in post menopausal women.
We also know that some people with sarcoid have a dysregulation of D caused by enzymes made by granuloma.
This D dysregulation can lead to kidney stones, hypercalcemia and nephrocalcinosis in an unlucky few. Damage can be done to the kidneys because of them having to excrete excess amounts of calcium withdrawn from the bones.
The catch-22 comes when enough damage is done to the kidneys by the initial excess of 1,25D and calcium excretion. The kidneys can no longer successfully make 1,25D or erythropoeitin themselves - so you do end up with a vitamin D deficiency, bone disease and anemia.
You absolutely need both D tests done to confirm whether you are in the fore stage of this condition (the excess of 1,25D overloading system with calcium) or the end stage where the kidneys are so damaged they can no longer make hormones and enzymes.
You cannot have the 1,25D test done while you are on prednisone.
I had problems last summer caused by vitamin D dysregulation with raised calcium and phosphate levels. I also had problems controlling other electrolyte levels. Now both Ds have taken a sudden dive. My anemia also got suddenly worse, despite taking iron for iron deficiency. Most of my kidney paramaters have also worsened.
I am going to be going onto small doses of vitamin D because of this problem, so I will keep everyone posted on any eventualities. My doctor thinks I have had hypercalciuria which remained undiagnosed for years and it along with sarcoid has caused damage to my kidneys. I have red and white cells, casts and protein in the urine now. I don't have any sign of diabetes, so it isn't any form of diabetes which has caused my kidney issues.
Don't let the medical fraternity make you sicker. Advocate for yourself and your tests. Kidney disease can be masked in sarcoidosis because fatigue, lethargy and breathlessness can be put down to lung issues when they are actually caused by the kidneys. Make yourself familiar with signs of kidney disease and hypercalcemia. They can all easily be put down to sarcoid or drug side effects. So often by the time your bloods begin to deteriorate, the damage is already done.
Get fasting blood sugars done if on prednisone because diabetes can also damage kidneys. Check HgB levels and search properly for the cause of the anemia - don't just accept iron pills or D pills willy nilly. These could wind up making you sicker.
Another catch 22. If you are young enough for a kidney transplant, if you still have sarcoid or diabetes, you will probably need another transplant since the cause of the problem will still be present.