Saturday, September 5, 2015


From the time I first got sick 4 years ago, I have nearly always had mild elevations of bilirubin. Bilirubin is a product of the breakdown of red blood cells. When it's elevated, you can develop jaundice. In my case, the elevations are usually very mild 1.1-1.3 with a range of 0.2-1.0. The last few weeks I've been trending upwards and I'm now at 2.3. Nearly double of my "normal." This change happened shortly after I stopped taking actigall (a medication which may have been preventing or treating gallstone formation) and started Octreotide (a medication known to CAUSE gallbladder problems in >60% of patients). I have been having fantastic results with Octreotide so I would like to do everything I possibly can to not have that medication pulled. It has been allowing me to eat without a severe drop in BP for the first time in years. It's one of the only medications out of countless trials that has given me a reliable way to help MYSELF out of a severe symptom set.

In the past, mainstream doctors have blamed Gilbert's Syndrome on my mild elevation of bilirubin. Gilbert's syndrome is a harmless genetic mutation and it affects the way that the liver processes bilirubin. There is no need for treatment, and the liver enzymes can be expected to remain slightly high and fluctuate in and out of mild jaundice levels from time to time. This sounds logical..........except, in my case neither parent nor my siblings have ever had increased bilirubin. I seem to be the only one.

Factors that increase the chances of your bilirubin going up are as follows:
  • Dehydration
  • Lack of sleep
  • Low calorie diet or fasting
  • Menstruation
  • Stress
  • Illness
  • Strenuous exercise
Increased liver enzymes are often associated with Erlichia as well. I do not test positive for Erlichia (but do for Babesia Duncani and Lyme). 
I've also been fluctuating in and out of normal range for BUN and my potassium is starting to drop as well.  It's very difficult for me to maintain fluid/electrolyte balance with all the medications I need to take, my salt intake for low blood pressure, the running I force to keep my BP up temporarily and the hot weather we've been having. I think that if I had gone to the ER or had access to an infusion center to get rehydrated when I clearly was dehydrated multiple times, I would have none of these abnormalities.