Can't Get Help. What Next?

I just returned from a whirlwind trip to Scottsdale Mayo campus. I’ve been dealing with totally crippling and devastating fatigue for more than 1 year — which started after my 5th spinal surgery in the past 4 years. My medical/surgical team initially thought the fatigue was just due to a strenuous surgery and recovery. But then I lost 50 pounds without trying and cortisol tests revealed low cortisol levels. After a cortisol stim test with some confusing numbers, one of my doctors who trained at Mayo wanted me to be evaluated by a Mayo team to get to the bottom of what’s wrong. He assured me that the Mayo doctors are the best at what they do and their team approach to providing care is second to none. Thankfully the referral went in on Tuesday of this week and by Friday I was being seen in Scottsdale by an endocrinologist.

I spent a thousand dollars on spur of the moment airline tickets, a rental car and lodging. I was deeply hopeful that I would have the experience that’s printed on Mayo’s own website:
“Successful treatment starts with an accurate diagnosis, and our experts take the time to get it right. A team of specialists will listen to your needs and evaluate your condition from every angle to make the very best plan for you”.

Unfortunately, that was nothing like my experience.

Instead, I met with an endocrinologist for 20 minutes who looked at my file and said, “yes your cortisol numbers are a little low, but not earth shattering. I don’t think your symptoms are actually endocrine related. I don’t know what’s causing them, but I’m sure it’s not related to anything I treat. I will run a few lab tests to rule some things out but I doubt it will uncover anything. I’m sure that whatever’s wrong with you isn’t related to my department.”

So, I asked if I would see her again and she said no the results would be posted on the patient portal. I then asked what happens after that and she replied, “you go home”.

So I had labs drawn for thyroid and diabetes, and celiacs disease, and she redid the cortisol stim test. They came back negative, and I am now on a plane home (in just under 24 hours at Mayo) with no diagnoses, no further steps, no referral, and no suggestions about where to turn. What happened to Mayo’s commitment to find an accurate diagnosis and for the evaluation by a team of experts?

And what am I supposed to do now? I’ve still lost 50 pounds without trying and I’m still so tired I can’t function. When Mayo won’t help? Where do you turn? I’m so thoroughly disappointed in the Mayo Clinic I could scream - but I’m too exhausted to do so.