If you have been reading these blog posts, you know how much of a roller coaster Colleen has been on. From being diagnosed with Gastroparesis to having a second test come back (relatively) normal, to having blood tests show other possibilities. The list goes on and on - when you reach this point, sometimes you do have to take a step back and consider what it all means. What did all of those digestive tests really show? What clues are hidden in plain sight within her bloodwork? What steps can she take next to try to get to the bottom of this? When you are very sick like Colleen has been, things can go a million miles per hour - your brain gets scrambled with so much information that it gets to the point where absolutely nothing makes sense.
Recently, our primary doctor ran a lot of blood tests for Colleen. Not all of the bloodwork was ordered by him - some was from other scripts given to us over the past several months. In the end, it lead to a lab report almost as long as "War and Peace", and provided a few interesting clues but without any type of diagnosis. Of course, no bloodwork in and of itself can lead to a diagnosis. I have written at least once on here about blood results being nothing more than a "number on a page". And that is exactly what they are - you can't look at a number and determine whether or not someone is healthy or sick. The numbers are just supposed to help guide you in a direction.
Her bloodwork this time reveal a very low Cortisol AM number. Low Cortisol is typically associated with a disease called Addison's Disease, but that disease is so rare (1 in 100,000) that you have to also look in other directions. One of the directions it will lead you in is a condition called Adrenal Fatigue. If you look up Adrenal Fatigue online, you will see a million different symptoms associated with it - you read enough about it, you may even be convinced that you have it. It isn't about reading a list of symptoms and trying to fit your square peg into a round hole - it is about looking for the most obvious clues and putting the pieces of the puzzle together. Not many doctors are going to come out and say "You have Adrenal Fatigue Syndrome". It is probably treated similarly as Chronic Fatigue Syndrome is - some doctors recognize it, some are skeptical of it, and hardly any of them truly understand it.
This is not to say Colleen has it, or doesn't have it - all we know for now is that the results of a blood test reveal low Cortisol levels. They also revealed high B-12 levels (which is not clinical - again, another possible clue that needs to be looked at). If you look up "high B-12" online, you will be scared by some of the stuff you read. Elevated B-12 levels in the bloodstream can certainly be a response to a serious condition - but that doesn't mean much of anything. If you have a serious condition, it will likely first show up elsewhere, and the high B-12 will just be one of those "Well, you have this disease - and that is why your B-12 is starting to rise". Any doctor that looks at elevated B-12 and concludes you have a serious problem just based on that info alone is likely a doctor you want to run away from.
So, what to make of this - low Cortisol; elevated B-12; a thyroid that in one test showed she was hyperactive, and in another test, showed she was low-normal. Of course, all of this added on to the fact that she has a serious stomach ailment and is consistently fatigued. There has to be a doctor out there somewhere who looks at the results of every test she has had, takes a deep look, and comes up with something that is the answer to this 3-year old riddle. A riddle that is severely impacting a person's entire life.
Sometimes, we need to take that step back - not jam ourselves with so much information. "One step at a time" has been one of my mantras to Colleen since Day 1. But it seems that every step we take is a baby step. We need a giant leap forward.
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