Monday I saw the nurse practitioner at Lovelace endocrinology. I actually liked her well enough. Too bad she’s leaving the practice. She’s older than my regular endocrinologist and just has a calmer energy about her. My regular doctor never sits down and is constantly in motion. I’ve described her as a hummingbird before. I don’t know if that’s her natural instinct or the only way she can survive in that crazy environment.
Anyway, the NP listened to my bitching about the poor communication from that office, my inability to get medication for six weeks, the lack of following the protocol for the Ozempic, and my desire to try to get OUT of that practice. She understood where I was coming from but had no good answers for me. “We’re just short-staffed and behind in everything.”
I said I imagine good providers lose sleep over the fact that they’re not able to provide timely care to their patients. “Yep, we do.”
She herself is leaving Lovelace for UNM in a month. I told her I was trying to get in as a patient at UNM. She said, “UNM only takes diabetes patients who are on insulin and whose A1C is above 9.” Well shit. I’m glad I don’t meet their guidelines, but there goes my option for being seen at UNM.
I told her I had an appointment with the concierge endocrinologist the next day. She knew her and spoke highly of her. But I said I still need some place as a backup. I guess I’m stuck with Lovelace. That sucks.
We discussed my diabetes medication. I’m sure I’m the only person on the planet who doesn’t want to be on Ozempic. I just don’t like the idea of being on a medication that I may have a hard time getting due to its popularity for weight loss. And I’ve heard some people say they “forget to eat” when they’re on it. I don’t like that either because it throws my potassium (among other things) all out of whack. And my lab results get all screwed up. Then they want to put me in the hospital or something. (This was how I wound up in the hospital the first time way back when. My anemia was in high gear so I’d come home from work and just go straight to bed. Boom. Everything went haywire, and I ended up in the hospital for four days.)
She was fine with my staying on the metformin for now. I asked about glipizide because that’s safer for the kidneys than metformin, but she said glipizide loses its effectiveness over a relatively short time and isn’t great for the pancreas. However, she did recommend my switching to metformin XR, which is a slower release form of the drug that causes less GI upset. And she said she would prescribe a low dose glipizide for use on chemo days when my blood sugar goes really high.
Then she asked me why I don’t have a sensor (or a “continuous glucose monitor”). I wanted to say, “And who would prescribe that? My doctor who never gets back to me?” Instead I said, “You’re the first one to mention it to me.” I also said I thought that was only for people on insulin. She said it used to be that way but now it just depends on one’s insurance. [And I just saw online that they will soon be available over the counter without a prescription. I hope that brings the price down on the sensors . Mine is covered by my insurance but I’m sure lots of people have to pay out of pocket for them. They run about $150 per month.]
Then I got phone-shamed because my phone is not up-to-date enough to support the sensor app. I’ll have to use a sensor reader. No big deal.
She put in lab work for an updated A1C (the last one was done nearly a year ago; it definitely should have been done more recently than that) and thyroid labs.
So I left there with prescriptions called in for new metformin, glipizide, sensors and a reader. And no follow up date until I figure out what I’m doing. I went downstairs to the Tri-Core lab but holy crap, there were 16 people ahead of me. No thanks. I scheduled an appointment for later in the day at Tri-Core close to my house.
The next day I was notified on my phone that some test results were in. I was very concerned about my A1C since my blood sugar had been so high within the last few months. I had visions of it being like 10 or something.
[While I was dealing with this high blood sugar situation, I had a patient come in, young guy, about 50. He said he woke up one morning, and he couldn’t move, see, or hear. His family had to call 911 to get him to the hospital. Turns out his blood sugar was off the charts. I asked him if he had stopped taking his diabetes medication. “No, I wasn’t on medication. I didn’t even know I had diabetes until I was in the hospital.” He said he wasn’t having any symptoms. No dizziness, blurred vision, excess thirst, excess peeing, nothing. Whoa. How scary is that. The A1C test only goes to 14, and his was greater than 14. And a 14 A1C is equivalent to a blood sugar of 355. Well hell, my blood sugar was higher than 355 at times over the past few months. And I wasn’t having any symptoms either! So all this had been floating around in my mind.]
Big relief: My A1C was 6.3, even slightly lower than the last test. That was a load off my mind.
My thyroid labs were off, but I never know how to interpret them. I figured I’d let the doctor explain that to me.
The next day I had a video visit with the concierge endocrinologist, or the ConDoc, as I’ve respectfully shortened it to. She got on the appointment on time, which was already an unexpected bonus.
I gave her a brief history of my kidney issues, the steroid issues that led to my hospitalization as well as the diagnosis of diabetes. She also got to hear all my bitching about the previous endocrinologist, her lack of communication, and going without medication for so long. She agreed I was “mismanaged.”
I told her I’ve had to navigate a lot of this on my own, from finding a nephrologist to treat me when I was first diagnosed to managing my blood pressure and diabetes medications.
She’s not happy I’m on metformin and will likely change that due to the potential kidney implications. She also doesn’t believe glipizide is the right medication to handle to spikes in my blood sugar when I have chemo. Of course she wants me to go on Ozempic primarily because it will be safe for my kidneys. I told her I was on the 0.25 mg for about three months and then have been on no Ozempic for about a month.
I said the previous doc recently prescribed me 1 mg of Ozempic but I didn’t take it because I wasn’t sure if I would go hypoglycemic with the metformin. She said likely not, but that it was good I hadn’t taken it because I would not have felt well starting over at that high of a dose. She started me back on .25 mg and then next week will increase to 0.5 mg. I’ll stay there for a bit until we see what my blood sugar is doing.
The one side effect of Ozempic that I just dreaded hearing is heartburn. Ugh. I do not recall having that last time but I was on a low dose. We’ll see how it goes with a higher dose. She said if the heartburn is bad, she may switch me to Mounjauro. I’ve heard of that but I don’t know much about it.
She is also considering a diabetes medication called Actos, which I’ve never heard of. That doesn’t mean much; I’m not a physician. But I do see patients’ list of medications all the time, and that’s just not one I’ve seen.
We also talked about my thyroid test results, and she said I am being overmedicated but she wanted to look through my records more to see if that was being done intentionally. When you have thyroid cancer, you’re kept in a state of slight hyperthyroidism to reduce the recurrence of cancer. But it’s been 12 years since my diagnosis and thyroidectomy. My being overmedicated may be why my hair is falling out. That happened once before many years ago.
She asked if I’d had a bone density exam (yes, in December 2021) and a cardiology consult (yes, sometime in 2020 but I couldn’t remember when). I got the sense that she may want to repeat these tests.
She was very happy I got the sensor. She said there was a way to allow her to see my “live” blood sugar levels. To me, honestly, it seems kind of like overkill for someone with an A1C of 6.3. But as Kyle pointed out, with my kidneys only partially functioning now, it’s better to know right away if something is going on with my blood sugar to prevent more damage.
I asked her all my “logistical” questions: can she order labs through Tri-Core, thyroid ultrasounds through Lovelace? Yes and yes. Will she communicate with my nephrologist and oncologist as needed? Yes, and she knows both of them and spoke highly of each.
I told her I did want to proceed with her care over the next year but I wanted to be sure that I could continue to keep Lovelace as my back up in the event she retires, moves, wins the lottery or whatever. She said yes, it was important that I still say “in the system.” That was good to hear. I should probably call Lovelace and make an appointment for god knows when, just to stay in the loop.
I liked her well enough. As this was the first visit, I was allotted a fair amount of time. But she is a good listener and asks good questions. She must have said a dozen times, “You’re dealing with a lot.” To me, it doesn’t feel like that now. Certainly back when this was just starting it was incredibly overwhelming and difficult to manage. But now it just seems like “This is the way it is.” Take these meds, check your blood sugar, do these blood tests, get chemo every other Wednesday, have a biopsy every so often, collect your pee for a weekend every so often… I just do whatever my docs (and my phone) tell me to do.
After finishing my meeting with the doc, I went to Walgreens and picked up my sensors and reader. I was given two sensors, which is a month’s worth. Each lasts 14 days. I didn’t know anything about this whole process. I read the instructions and watched a Youtube video. I washed and dried my arm, wiped it off with alcohol as instructed, waited for it to dry, then used the applicator to apply the sensor.
It didn’t work. It didn’t come out of the applicator.
I tried the second one, same exact process, and bingo. This little gadget was now attached to my arm.
I followed the instructions to activate the sensor with the sensor reader and bam, an hour later, I was up and running.
The following day was chemo Wednesday. Those days I also have to take steroids in the morning. I noted my morning/early afternoon blood sugars were around 140 – 150, which is a little high but likely due to the steroids. At 3:45, my chemo (mixed with dextrose) was administered. The whole night I just watched my blood sugar get higher and higher until it topped out at 334 around 9:00 pm, then it slowly dropped back down. It was 218 when I went to bed around 11:00.
The next morning my fasting blood sugar was 155 (still high) but then around 10:00 that morning, it dropped and just leveled out the whole day between 120 – 130.
I can see how some people might get a little obsessed using their reader (or phone app). It’s so easy to check all the time. It updates each minute so you could literally look at it all day long. I’m glad I’m busy enough at work not to have the time to check it out constantly.
Thursday I received a text message to pay the bill from the ConDoc’s office. A few dollars over $1900.00 for the initial consult and one year’s worth of medical care. As I said the last time, I feel it’s complete bullshit I even have to go this route, particularly when I have good insurance. But I will say I am glad I at least have this as an alternative. And again, I do not take for granted how fortunate I am to be able to afford this option. I know many people cannot, and they are just stuck in a system that doesn’t give a rat’s ass about them.
Friday I sent all the above blood sugar information from Chemo Day to the ConDoc. She said if I would allow it, I could install an app that will allow her to see my blood sugar readings in real time. She also said she would like to prescribe me long term and short term insulin, which I assume is to be used on chemo days.
I reminded her I don’t have the sensor app on my phone and that I am only using the reader. In that event, I don’t believe I can share my real time blood sugar values with her. I also said that I’m not opposed to using insulin on my chemo days but that I would prefer to make medication changes systematically, one at a time, so that I know what’s working and what’s not. It’s too hard to monitor if several medications are changed or added all at once. So my preference is: increase the Ozempic to 0.5 mg next week; change to a new diabetes medication if she wants; then down the road a bit, add in the insulin if needed. This would be a good time to find this all out, as I have chemo next week then not again until mid-September as I’ll be out of town. This was sent on a Saturday so I’m sure I’ll hear back on tomorrow.
I also asked what her plans are for my thyroid medication. I would like to get that sorted out before I go completely bald.
[Just a few minutes ago I got a message from the Lovelace endocrinology NP stating that I am being overmedicated and to cut back on my thyroid medication one day a week. I will send that information to the ConDoc shortly.]
So…away we go with a new doctor, a potential new plan, and a hole in my bank account. We’ll see how this works out.
Low, Low, Low 