Thursday, January 3, 2019

Getting your Cortisol Dosage Right

Doctors generally scare patients from taking extra cortisol (ie updosing or stress dosing) after pit surgery, adrenal surgery, or removing both adrenal glands (BLA). This is rich. They barely believed that we had Cushing's in the first place, yet now we must respect them as experts in the damage caused by excess steroid replacement. They rail against the damage of long term cortisol replacement TO CUSHING'S PATIENTS, as if we don't know, as if we aren't still living the nightmare of excess cortisol made in our bodies. Many doctors refuse proper cortisol evaluation, imaging, or simple blood tests to evaluate related pituitary and adrenal hormones even when the patient asks. Doctors delay diagnosis in every way possible, leaving us with rampant cortisol excess for 7-10 years on average.

So let me be clear.

Updosing for illness is life-saving in the short term. The long term doesn't matter much if we are dead and not here to enjoy it.

All bodies use cortisol to fight off infection. Our bla bodies will fight off infection but it will use up our daily dose of cortisol replacement to do it, leaving us under-replaced and on a path to adrenal crisis. Diarrhea and vomiting both cause dehydration which alters how much fludrocortisone/ aldosterone replacement we have to rebalance our fluids. If a BLAer vomits, dehydration is an issue but the more dire concern is that oral meds won't be absorbed before vomiting again. In this case, we can take 20 mg HC under the tongue, take anti nausea medicine like zofran or phenergan to hold off the vomit. If we can't take extra cortisol by mouth, we must go to the ER 1) for IV fluids due to dehydration and 2) IV hydrocortisone. For diarrhea, dehydration happens but we can easily take oral steroids under the tongue to keep AI and AC at bay. Those of us who have D instead of V in adrenal insufficiency have more time to figure things out. After 4-6 bouts of diarrhea, then we have to go to the ER for IV fluids even if we keep the cortisol dose down. So it is a tricky flowchart to follow but we must do it when we are sick.

Docs tell us to just stress dose with fever. This is not true. Many of us need more cortisol meds for urinary tract infections, simple colds, upper respiratory infections, pneumonia, shingles, pain from kidney stones, etc. BTW I've had all those post op BLA. I needed more cortisol that the 20-25 mg HC i was taking daily. Once, I was feeling very tired and worn down one Monday. All I wanted to do was sleep. Wednesday morning I coughed once. I knew I was sick. I went to urgent care that same morning and I had pneumonia.

Our bodies will tell us it needs more cortisol. We must learn the cues, trust ourselves, take doc advice into consideration but ultimately take meds as we need to, without worry of judgment or repercussion from the docs. They don't live without adrenal glands. We do. All 230+ in the BLA group do. That is why I place 40% of my faith into the answers I get from BLAers, 10% from doctors, and 50% from my experience, knowledge, and instinct. I encourage you to gain enough knowledge and surround yourself with experienced Cushies for you to do the same.