Hoping for Mayo

This is part of a personal/medical series (GDTRx), unrelated to travel.

The Mayo in the title would be the famed Mayo Clinic; specifically, I’m hoping for an appointment with their endocrinology group in Minnesota.  I haven’t mentioned this hope yet for fear of jinxing myself, but all I’ve gone through the past week just to get my records sent to their review committee makes me lose hope as it is, so what the heck.  

The short version of this story is that I got all excited when Mayo called me back about my request for an appointment and told me to have my records sent to them. I put in yet more requests to my doctors, and then called Mayo every danged day to make sure my records got there, since I’ve been through the ringer with this already with the mri order and the referral to the doctor in Richmond.

Crickets. I explained that one reason I’ve left my former endocrinologist is bad communication, which, you know, case in point. The appointment operator suggested I fax my records myself, despite that being frowned upon, just because I don’t know what else to do.  

Now, a week later (I’m editing this post because, yay) I just learned Mayo may have received everything, and a triage team will review and decide if I’m worthy of an appointment. One way or another, at least it’s all out of my hands! The review process takes about a week and a half.

You’re Feeling Okay, Though, Right?

Many kind friends have asked me that, and I don’t know my answer.  Some days I’m not. My biggest symptom is my normally low blood pressure that’s been even lower lately (90/60) and drops more when I stand up. This is fine every now and then, but because it’s chronic it indicates something bigger.  

I have other symptoms that alone also are no big deal, but together point to overall low endocrine function. Wonky glucose makes me frantic to eat if I’ve gone three hours without, then I crash after. Plus there’s the continued insomnia, anxiety, and knee swelling which is keeping me from exercising.

So, I get dizzy, and hungry, and I’m tired and anxious. Big whoop, right? Believe me, I keep going back and forth on this.

What’s clear, though, are my lab results. They point to hypopituitarism and secondary adrenal insufficiency (I grabbed those off my records when I faxed them to Mayo).

Treatment?

Also on my mind is that how you treat this (if it’s what’s up for sure) is corticosteroids for life. Which no one wants. Although, Dr. Google tells me the side effects are not as bad for people with these conditions because steroids are filling in for missing hormones, not overloading hormones as they do for other people.  

Except, my former doctor took me off steroids when she saw a certain lab result; three months later she realized that her staff ran the wrong test, so that result is not actionable. So, should I still be on the steroids? Hard to tell seeing as how I’m not getting a response from that doctor anymore.  

Something to keep in mind is the small risk of acute adrenal crisis, which is why I was on steroids in the first place. Don’t look that up: it’s the kind of thing you shouldn’t know about (like brain tumors) unless you’ve been diagnosed. So, I’d really like to get this sorted soon.

If Mayo won’t see me, we’ll head to Houston where maybe my pcp can get me in with his guy.

Better News: The top image is from where we’re staying this week on the Chesapeake Bay in Virginia. It’s glorious! That’s a downright positive story, coming next.